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Peridot_Gem
02-10-2011, 08:53 AM
When i got up this morning I thought i'll phone the doctor's to see if they've had the rheumo's letter faxed to them before i went for my B12 jab and they had'nt, so i phoned the specialist receptionist and i asked her if they'd sent the letter through by fax to my doctor's, the letter had been done and sent but by normal way of post, the sister never passed on the fax number of my doctor's, so I asked them to fax it through as i was going for my B12 jab this morning and it would help me out before i got there and the eye infirmary appointment is for the 10th march.
I had to see a doctor standing in for my GP because the blood doctor I saw said take 200mg one day and 400mg another alternative and the Rheunmo specialist said in his letter to take 200mg daily. The doctor I saw was brillaint about the condition and new such alot he must have studied it. I told him everything that happened and he said your to take 200mg daily, what the blood specialist said was way to much in the system and he started chatting about my diseases and the lupus, I told the doctor I've got more information out of you than what the specialist will give me and even my hubby asked out of 10, how bad was it in my system and we got no answer he said they won't commit themselves with systematic lupus that's the body organs, I told him my gullet was dried out and the specialist up the hospital asked if I had pain around my heart and when answering yes i got no reply and i also mentioned my dehydration to the doctor, he said because your system is losing bodily fluids which your organs need, it starts your organs off needing fluid and he told me to get fluids and water in me and I told him about the gyno trouble and losing blood plus urine, he said the blood needs to be stopped because of your anemia and the bits of urine is off the lupus when it's playing up to much, I asked if there was a tablet for the spasms in my legs as that's painful he said no and that's off the lupus when it's working at it's extreme.
He said your muscle wastage the sjogren's disease, will make you numb I said I have that on the right side of my face regular like I've had a stroke and he said because of your bodily fluids getting less in time the sjogren's will tigthen your skin where it will be painful just even smile (i actually thought it gets better as it goes on).

I've just took one at 2pm with 1000mg of paracetamol and it's lets see what happens from now on and i'll keep everyone updated regular on this thread, who have supported me so much and that support and closeness as helped me get along so far, although i do find the disease hard, like many of us.

tgal
02-10-2011, 08:58 AM
I am really happy for you. Please remember that the plaq takes many months to get fully in your system.

Peridot_Gem
02-10-2011, 09:12 AM
I am really happy for you. Please remember that the plaq takes many months to get fully in your system.Thanks mari for your full support you've been golden since i joined and can't thank you enough and like you said it does take months like i've read but i'm just happy starting something at last which is'nt a steroid, i just hope i can cope with the side affects when it does kick in and it does'nt flare my seizure's anymore than what they are.

tgal
02-10-2011, 09:26 AM
Terri,

As you know I have seizures as well and I take 400 mg a day of plaq. Never have I had a seizure nor had any side effects. I hope it goes that well for you

lovehubby
02-10-2011, 10:23 AM
I do wish you all the luck in the world on the Plaquenil. I just can't stand the stomach upset and the heart plapitations and the ringing in my ears I never had till I started on the plaquenil. But everyones different so maybe it will all work out for you and I hope to Dod it does. I don't know what I am going to do yet I guess i will wait to see what the rheumy saids on the 28th when I see him. Take care and good luck to you.

Peridot_Gem
02-10-2011, 10:45 AM
Terri,

As you know I have seizures as well and I take 400 mg a day of plaq. Never have I had a seizure nor had any side effects. I hope it goes that well for youMari, i do hope i'm ok than mate and since i've had my B12 jab both my legs have gone really warm lovely feeling instead of feeling like ice. lol

Peridot_Gem
02-10-2011, 10:48 AM
I do wish you all the luck in the world on the Plaquenil. I just can't stand the stomach upset and the heart plapitations and the ringing in my ears I never had till I started on the plaquenil. But everyones different so maybe it will all work out for you and I hope to Dod it does. I don't know what I am going to do yet I guess i will wait to see what the rheumy saids on the 28th when I see him. Take care and good luck to you.Hello Michele,
Thanks alot mate, it's like i told mari if it affect me like it's doing you i just hope i'm able to handle it but my main concern is my seizures.
I am sorry to hear your no better but refering your rheumo i wish you the best of luck, that doctor i saw today was just a GP now if he was my rheumo i would be full of confidence he really new his stuff. I just hate how the rheumo's hold stuff back and won't commit themselves.

Peridot_Gem
02-11-2011, 10:05 AM
Just letting everyone know, the last 2 days i've had nausea really terrible and wanting to be sick, my minds been all over the place at times but this is all down to the B12 injection and i must have been in a right heavy sleep this morning with all the drugs, my hubby said he had a right game to waken me up and i did look like deaths door as well.

magistramarla
02-11-2011, 11:57 AM
Terri,
Hang in there with the plaquenil and give your body a chance to adjust to it. It made me quite nauseous at first, too. It sent me running to the bathroom with the trots for quite a while, too.
I've been taking it for 2 years now, and it doesn't bother me so much any more, but I haven't had problems with constipation thanks to the plaq!
As Mari mentioned in another thread, I've noticed that if I skip a few doses (usually forget when I'm traveling) I start to see skin problems coming back.
I hope that it helps you, too.
Hugs,
Marla

kim,l
02-11-2011, 03:18 PM
dear terri i am so happy that you finally have the plaquenil just hang in there it took 12 weeks for it to kick in for me i will be thinking of you my good friend hugs kim l

BonusMom
02-11-2011, 07:20 PM
It took a while for the Plaquenil to start working for me as well, but I did notice an improvement in my fatigue at around 3-4 months. Unlike the others, I had no issue with diarrhea or nausea and I was on 600 mg for nearly 2 years and then reduced to 400 mg in September.

I hope you see some benefit and feel better soon.

Peridot_Gem
02-12-2011, 08:05 AM
Terri,
Hang in there with the plaquenil and give your body a chance to adjust to it. It made me quite nauseous at first, too. It sent me running to the bathroom with the trots for quite a while, too.
I've been taking it for 2 years now, and it doesn't bother me so much any more, but I haven't had problems with constipation thanks to the plaq!
As Mari mentioned in another thread, I've noticed that if I skip a few doses (usually forget when I'm traveling) I start to see skin problems coming back.
I hope that it helps you, too.
Hugs,
MarlaHello Marla,
Oh i'll hang in there mate because i just need something to help with what i'm going through but the B12 as been making me have nausea, fever's, burning in the legs, tingling through my body and i've noticed when i take the plaquenil at 2pm in the afternoon it makes the nausea worse but for some reason my mental state is way up the wall and it's hard to control all symtems going mad in one go then i actually turn nasty and my hubby recieves the earache then.

Peridot_Gem
02-12-2011, 08:14 AM
dear terri i am so happy that you finally have the plaquenil just hang in there it took 12 weeks for it to kick in for me i will be thinking of you my good friend hugs kim lHello Kim,
Thanks for the support mate, i think i'll get the affects off this quicker than alot of member's have said because already into the 3rd day it makes my nausea worse. I just hope i can keep my temper carm come teatime.lol

I hope your ok mate and feel abit better. xxxxxxxx

Peridot_Gem
02-12-2011, 08:18 AM
It took a while for the Plaquenil to start working for me as well, but I did notice an improvement in my fatigue at around 3-4 months. Unlike the others, I had no issue with diarrhea or nausea and I was on 600 mg for nearly 2 years and then reduced to 400 mg in September.

I hope you see some benefit and feel better soon.Hello Bonusmom,
Like i said to kim i think i'll find this working on me quicker than it should do plus i have a very addicitve system towards meds which does'nt help.
The blood specialist wanted me on alternative days to take 200mg one day and 400mg the next but the GP i saw standing in for my Doctor said it was way to much into my system unless it's because of my other medication but i'm still taking paracetamol; besides to try and help it.

Thank you for your reply xxxxxxxx

Peridot20_Gem
03-07-2011, 07:39 PM
Just letting everyone know i've been on this plaquenil 5wks now and that flown quick to me, well it's working already.
Constant nausea and stomach pain leading up through my gullet and i feel like i could rush to the bathroom and throw up but my worst fears are my bowls are starting to go lose if i eat anything i'm on the toilet.

It's making me stressed more alot with my temper and my out bursts at my hubby are terrible and when i manage to carm down, i'm like severn trent waters after god the crying i do is terrible.

I really hope everyone is ok & all my love and thoughts are with you all.

Terri xxxxxxx

magistramarla
03-10-2011, 05:18 PM
Terri,
You really seem to be reacting badly to the Plaquenil. I also had some bouts of diarrhea when I first started taking it, but my body got used to it and it rarely happens now.
What dose are you on? Perhaps your doc could lower the dose for a while, and then gradually work it back up.
Hugs,
Marla

Peridot20_Gem
03-10-2011, 06:52 PM
Hello Marla,
I hope your keeping fine mate.
Well the plaquenil's kicking in quick, nausea is terrible and i've had that bad today i could have just throwed up and stomach pain is bad plus i've just come on again in less than 2wks and that ontop ah helping, i've not got actual diarrhea yet but my bowels have gone loser and as soon as food goes in me the next place of call is the toilet
They've got me on 200mg a day but my main concern is when it properly kicks in and i don't have trouble with my seizure's rising because if it happens i've got to pull off it anyway.
I go to the eye infirmary next week, then 2 day after that caffeter test, i ah looking foward to that one very much either.
They place 2 tubes through your cervix and one up your backside and fill you with fluid while the other tubes watch what's happening, i've got to be there for 9-30 and a full bladder from when i wake, god knows how i'll manage that but i'll have to wait and see.

Love Terri xxx

steve.b
03-11-2011, 06:21 AM
Peridot20_Gem, steve here from australia. it is all very confusing, when doctors try you on new drugs.
the body has to adjust, your stress levels rise, making it worse.

once everything settles down. most of the side effects of plaquinel reduce also. the only side effect that i have is nausia. i take moxolon tablets at night, and plaquinel in the morning.

it took about 3 or 4 weeks for the plaquinel to take effect on me, but about 6 months for the side effects to stabalise.

Peridot20_Gem
03-11-2011, 07:09 AM
Hi Steve,
Nice to have you on the site mate, i've been a member since last August under Peridot_Gem but my registration went wrong so i'm back on.lol as they're all a great bunch of people.
Steve you ah got to tell me about doctor's and new drugs, they've tried to get me on stuff that's just come out in the past and i've refused, they must think your stupid, what with all the ailments i've had over the years and then found out 3yrs back they was all connected to Lupus and was born with it. They wanted me on steriods but i've refused, been on them before mate and Rob on the site told me plaquenil which is'nt one but it could possibly raise my seizure's so i'm hoping it dow.
Well to be honest my stress levels am high, i'm a manic depressive which dow help one bit and the pain i'm going through the lots doing my head in, i've started popping my valium again every couple of days, to keep my levels steady because my tongue's like a wip at my hubby mate.

Well i pop aload of drugs smack on 9am of a morning the plaquenil at 2pm and at 10pm another load and in between i take upto 4000mg a day of paracetamol to ease the joint and spasm pains i get. I'll soon know when it's working properly when the swelling of my hands ease abit plus my knee's and burning sensation i get plus having raynauds dow help.

Terri x

gringa1
03-25-2011, 10:45 PM
Hi everyone, I was recently diagnosed with lupus/fibro 8mo. ago, these past few weeks I've been in alot of pain throughout my body. I saw my family doctor and she is having start with cymbalta. I am currently doing 1600mg of ibuprofen during the day and at night to help me sleep I take 50mg mg of tramadol, which really isn't helping. I don't see my rheumy til July and at that point I might start with plaquenil, which I'll admit, I'm kinda scared to start taking. Right now I'm also taking 50,000 IU of vitamin D, 1 daily for 4 wks.

steve.b
03-25-2011, 11:18 PM
hi gringa,
plaquenil is not as bad a drug as the press make out.
it has the posibility of some bad side effects, but at the dosage we take, it is fairly safe.

there is quite a few threads about it.

it is good to have you join us.

tramadol 50 mg seams mild. try "panadol osteo" 2 tablets, 3 times a day.
but check with your doctor first.
cymbalta will help calm you, "a good thing."

enjoy reading what others have learnt. it is almost like a family here.

magistramarla
03-26-2011, 12:29 AM
Tramadol is NOT my friend!!! I tried it one morning, and then my hubby and I took a group of my students to state contest. I was proctoring a written test, and I couldn't wait for the last kid to leave the room. I shoved the tests at another teacher and rushed to the restroom to lose my breakfast. I was dizzy and throwing up the rest of the day. When my kids were winning the basketball tourney and insisted that I go to the smelly gym to watch the finals, I had to sit near a trash can and made use of it.
I was seeing double, too. "Did ya see me make that play, Mrs. D?" "oh, yes - twice!!!"
It turned out that Tramadol is an opioid. I'm allergic to them. I can't even eat poppy seeds (the source of opioids), or I break out in a rash and start wheezing.
My doc wrote NO TRAMADOL in red letters on my records.
Hugs,
Marla

Peridot20_Gem
03-26-2011, 11:23 AM
Hi everyone, I was recently diagnosed with lupus/fibro 8mo. ago, these past few weeks I've been in alot of pain throughout my body. I saw my family doctor and she is having start with cymbalta. I am currently doing 1600mg of ibuprofen during the day and at night to help me sleep I take 50mg mg of tramadol, which really isn't helping. I don't see my rheumy til July and at that point I might start with plaquenil, which I'll admit, I'm kinda scared to start taking. Right now I'm also taking 50,000 IU of vitamin D, 1 daily for 4 wks.Hi Gringa,
I so wanted to start the plaquenil because it's not a steroid and i've been on it 7wks tomorrow at 200mg daily but come monday i'm going to slowly draw myself off it, as the side affects are affecting me badly and to put it point blank it's making me worse but some meds are ok with some people where they don't suite other's and i just can't stand the side affects which hit me within 20mins of swallowing it.

Terri xxx

craftkeeper
03-26-2011, 12:44 PM
Hey Peridot, I understand how you feel. I too was in hopes on the Plaquenil, but i have had to go off of it for the moment.. It's been about 9 days since i took my last dose. I have been had a mouth full of blisters and blisters in my eyes since the 3rd day of taking it.. The doctor put me on Prednisone low dose for a 3 week run to try to get rid of all the blisters and he says he's pretty sure it's not the Plaquenil but i'm not so sure.. i have a eye doctor appointment on the 8th and my doctor told me i could wait until then to make sure it's not the medication. I also have become extremely sun sensitive after taking it. So for now i will just have to wait and see.. i hope everything goes better for you. It' a hard spot to be isn't it? Big Hugs.

Peridot20_Gem
03-26-2011, 03:33 PM
Hi craftkeeper,

It as knocked my neck in the amount of pushing with the doctor's to get me on it, as alot of the member's know with my threads and what went on because the pain off everything i have is terrible every day of the week and finding out off Rob it was the only one not being a steroid i was all for it and to suffer these side affects are terrible but i do admire other's who have fought it and are still living with the side affects because i've had all this lark for 25yrs with other meds in different ways but this stuff as got addicted to my system quick, i forgot to take it at 2pm on thursday and by 5pm i had the shakes and as soon as i took it bang within 20mins it had gone.
The side affects i started with was nausea plus bad stomach pain which i'm still having and most recentley i've been sick my bowels going loose, pulpatations, panic attacks if left alone, the pain in my lungs as got worse and stages of hard breathing and i've been puffing at my inhalers alot more/ concentration all over the place/ speech slurred more at times but they seem to all hit you in one go and your mind feels like it going soft trying to cope and this week my tongue as gone totally harsh with rawness and it's the taste i can't move, so i'm lacking on drinks more for my system.
Well what my mouths like refering my tongue i'd say the plaquenil may be causing the blisters in your mouth and it's funny your eyes are coinciding with your mouth at the same time. Well i wish you all the best with your appointment on the 8th but refering the sun me having raynauds as well as lupus my skin triggers quickly anyway, i was out for an hour yesterday in the shade wearing 50 block and came back in, the sun will trigger rashes and blisters as i suffer with them around my mouth and they look like cold sores.

Hard spot to be in mate, it's a total (JOKE) for we all, it's enough to send you soft.

Did you have the shakes coming off the plaquenil?? and how did you draw yourself off it, as i'm taking 200mg daily.

((Large hugs to you mate also and hold on in there)) xxxx

gringa1
03-26-2011, 04:17 PM
Hi Steve, I was thinking the same thing about it being a low dose. What I need is a medication that won't interfer with my work (haha), I work for a periodontist
and we have 3-4 surgeries every morning, some of them being as long as 3 hrs., so I need to be alert and uninterrupted with some much side effects. I will speak with
my dr.'s again and mention "panadol osteo". thanks.

gringa1
03-26-2011, 04:22 PM
Hi Peridot, I'm sorry to hear bout your diagnoses. Did this all stem from lupus?? My rhuemy seems very passive with me, wants me to start excersising and tells me not to worry.
But as I keep reading, lupus seems more serious than what she makes it to be. How concern should I be and what should I look out for.

Peridot20_Gem
03-26-2011, 05:04 PM
Hello gringa,

Oh dow be sorry mate i've had years of illness one after the other and was all connected to the Lupus they ran loads of tests after my dermatoglogist said i had raynauds and they diagnosed me with what i have below and i was told i was born with it, the rheumo found me an interesting lady what a JOKE, just years of suffering one way or another but life goes on.
I've found the plaquenil does'nt make you tied it fogs your brain more than anything, so just letting you know if you try it but the affects it's given me besides i can't cope with it with other stuff going on.
Your rheumo seems the same as mine but last time i went i saw the blood specialist and my hubby said out of 10 how bad is my wife's system got no answer but he asked how i was with my heart because of the sjogren's but i found out after because i have systemic Lupus they don't like stepping foward.
Where your rheumo as said exercise mine asked me to go swimming to help the lack in muscle and i told him straight how can i go swimming suffering with epilepsey and i'm banned from certain public baths, they're idiots at times.

Have you just been diagnosed with Lupus or have they given you other info concerning other diseases involved, as you can have different autoimmune diseases with Lupus and when your having your bloods tests, they don't always come out accurate and the lupus makes your bloods fluctuate giving off false readings at times, when it could be total opposite.

Hugs Terri xxxx

tgal
03-26-2011, 05:07 PM
I take 400 mg a day of Plaquenil and I have not had any of the side effects ya'll are talking about. I had diarrhea for 4 years so if that was a side effect I didn't know it. I was given meds for IBS and that fixed that right away. I take double the dose of everyone and I hate that people are getting scared of it because some have bad reactions. It has helped me more than anything so please, to anyone thinking about plaquenil, please know that there are many of us that have no problem with the antimalarial. And they to help with our issues more than many of the stronger meds.

I am NOT saying to ignore those that have had issues. I just wanted to point out that there are folks on the other side as well

Peridot20_Gem
03-26-2011, 05:23 PM
Mari what i'm saying is some drugs suite some people where they don't suite other's and i must be one of them, i've been raised with other drugs to the limits and they've had to drop them because it's affected my system bad and my epeilepsey nurse was'nt pleased with me going on it but did'nt stop me.
Well i'm not scared of the drug and it working properly it's that the side affects with my other tablets is to much, as i do have side affects from my other's besides plus i'm not telling other's not to take the drug i'm all for people who can master it like yourself and many other's on the site, i just know it's not helping me refering the side affects.

lovehubby
03-26-2011, 06:04 PM
Terri don't feel bad about not being able to take the plaquenil my doctor said that some people just cannot handle the side effects. And yes everyone is different I was on 400 mg I ended up in the E.R. with the worst case of gastritis they had to give me a pain shot to help me I could not even stand to swallow it felt like I had a note in my esophagus. Then my Doctor took me off for 4 weeks and then he tried to put me back on 200 mg then the loose bowels started all night long I all ready have IBS so I didn"t need that so we stopped again till it settled down and he had me go back on 200 again and heart palpitations really bad didn't need that crap either allready have SVT with my heart so that is when I called it quits besides it makes photo sensitivity worse too so no not everyone can take it.

tgal
03-26-2011, 06:06 PM
Oh I know you were just telling of your experiences and that is what we need to do! It had just been awhile since anyone posted that didn't have trouble with it. I just want people to know there are two sides!

craftkeeper
03-27-2011, 08:07 AM
Hey everyone.. Hope everybodys well today. I agree with Mari on the Plaquenil. Most have no problems with it as far as i can see. In my case, at this point, since i am such a new dx with Lupus it's hard to say if it's the Meds or the Lupus.. That is the only reason i am going at it slowly. My Rheumy asked me to make the appt with my eye doctor to make sure it's not damage or a reaction to the Plaquenil. If he deems it is not Plaquenil related i will try it again..of course at a lower dose and work myself up. I am hoping and praying that it is not the medication because it was really helping the swelling in my legs and feet. This morning without it i am swollen badly.
I had a little bit of a sick tummy with it but not much. Of course being new to all of this i was out in the sun and overdoing it at the same time, so really it could have been any of it. It's all really confusing when your not used to all of these feelings and i'm sure everyone knows what i'm talking about. It's hard to figure out what's meds,nerves or actuall sickness. Since i still feel so sucky without it i'm leaning more to maybe it's the Lupus,Fibro and Thyroid then it is the Meds. I still have the blisters even on prednisone so it could be a reaction to something not even related to any of it. Who knows?

lovehubby
03-27-2011, 12:50 PM
craftkeeper I just read on the side effects of plaqeunil and there is a paragraph about blisters on the skin I think the eyes and mouth are skin too so it might be the plaqeunil. If you just go to yahoo search and type in Plaquenil side effects you can read up on them Good Luck hope it all works out good for you

craftkeeper
03-27-2011, 01:10 PM
Hi michelefish and thank you.. Yes i read it and i agree, it could very well be the problem. My doctor wanted me to start with 400 mg but i never did get past 200mg..for nine days i think..
I'm hoping the eye doctor can shed some light on the problem. It's a new doctor that supposedly treats alot of Lupus Patients in this area so we will see. I really hope it's not because i really do not want to take the methotrexate. I know everything has side effects, but i always try to go with the lesser of the evils. Has anyone been able to start on the New drug yet.. Does anybody know?

tgal
03-27-2011, 01:15 PM
Hey everyone.. Hope everybodys well today. I agree with Mari on the Plaquenil. Most have no problems with it as far as i can see. In my case, at this point, since i am such a new dx with Lupus it's hard to say if it's the Meds or the Lupus.. That is the only reason i am going at it slowly. My Rheumy asked me to make the appt with my eye doctor to make sure it's not damage or a reaction to the Plaquenil. If he deems it is not Plaquenil related i will try it again..of course at a lower dose and work myself up. I am hoping and praying that it is not the medication because it was really helping the swelling in my legs and feet. This morning without it i am swollen badly.
I had a little bit of a sick tummy with it but not much. Of course being new to all of this i was out in the sun and overdoing it at the same time, so really it could have been any of it. It's all really confusing when your not used to all of these feelings and i'm sure everyone knows what i'm talking about. It's hard to figure out what's meds,nerves or actuall sickness. Since i still feel so sucky without it i'm leaning more to maybe it's the Lupus,Fibro and Thyroid then it is the Meds. I still have the blisters even on prednisone so it could be a reaction to something not even related to any of it. Who knows?

Correct me if I am wrong but didn't you have the blisters when you started the plaquinel? I had blisters in my eyes, mouth and nose when I stared on the plaq and the pred. It took about 4 months but once it cleared up I have not had them that bad again. Michele is correct though, if this is new since you began the meds you nee to talk to the doctor about them. You never know how many small things can be from meds. I had to lower the dose on my ammitriptyline due to it messing with my bladder . Just make sure to report all changes to your doctor because ya never know what is lupus/fibro/(insert disease here) or what is the meds

tgal
03-27-2011, 01:18 PM
LOL I hate it when I am posting at the same time as someone else and they answer my question in the post above me! I think we should call the psycic network!

lovehubby
03-27-2011, 01:24 PM
I know just what you mean I am n ot one to take meds very easy. I have to take three diff. meds for the SVT (superventicular tachycardia) and thyroid meds a B-12 shot and vit D supplement and a pain pill at night to help me be comfortable to sleep. It is like pulling teeth to get me to take these. They wanted me on methotrexate for years and I just kept saying no and will continue to say no LOL

gringa1
03-27-2011, 01:27 PM
Hi Craftkeeper, just being diagnosed with lupus/fibro, I don't I know what I feel is from lupus or the fibro. I'm hurting just about everywhere,and swelling and I'm thinking it's fibro?, other than rash and itchiness is that lupus, what else stems from lupus.

gringa1
03-27-2011, 01:38 PM
Hi Peridot, I was diagnosed with lupus about 8 months ago, lots of blood work that confirmed lupus. My thoughts right now is wait on the plaquenil until symtoms get worse, just started with cymbalta yesterday, will continue with ibuprofen. Unless cymbalta doesn't work for me then I"ll go back to tramadol and up the dose on that.

Peridot20_Gem
03-27-2011, 01:54 PM
Hi Gringa,

I had loads of blood work like you and that gets a nightmare. Well the reason for me wanting the plaquenil as i've mentioned before it not being a steroid, been on those in the past never again but i needed the plaquenil to help my body which is cramped of a morning/knuckles all swollen and inflammed/ leg and knee joints the same besides spasms which are very painful and i'm being straight there's alot more but if we all carry on the list never ends but the pain is severe with me but knowing it's not suiteable for myself but for yourself it's according to how severe in pain you feel to start it.

Your on iburophen, i'm the same for my monthly's as they help me alot in high dosages and as soon as that's finished i swap to 4000mg a day of parcetamol as my rheumo asked me to, as it helps the pain more for lupus than iburophen and i was to take asprin also having DVT.

I really hope something can be sorted to help you because i've noticed in the past couple of years how my symptoms have it my body harder with the Lupus and other diseases with the pain.

Terri xxx

Peridot20_Gem
03-27-2011, 02:16 PM
Terri don't feel bad about not being able to take the plaquenil my doctor said that some people just cannot handle the side effects. And yes everyone is different I was on 400 mg I ended up in the E.R. with the worst case of gastritis they had to give me a pain shot to help me I could not even stand to swallow it felt like I had a note in my esophagus. Then my Doctor took me off for 4 weeks and then he tried to put me back on 200 mg then the loose bowels started all night long I all ready have IBS so I didn"t need that so we stopped again till it settled down and he had me go back on 200 again and heart palpitations really bad didn't need that crap either allready have SVT with my heart so that is when I called it quits besides it makes photo sensitivity worse too so no not everyone can take it.Hi Michele,
I dow feel bad so much about taking the plaquenil because christ i take the pharmacy mate and i ah about to sit back and let something else put me in furthur pain and hurt my system even more, i'll just carry on with the parcetamol.
As soft as it sounds michele the way my chest as been with it, it actually makes you feel like your going to have an heart attack never mind anything else and when my hubby was popping out it seemed to make me get panicky even more.
Michele what it was putting you through just shows it can affect some people badly, when i saw the stand in GP at my doctor's for it and how much to take because the blood specialist wanted me to take 200mg one day and 300mg the next on alternative days and the GP said no that's way to much in your system with your other meds and he put me on the 200mg. I was diagnosed 2yrs back also with my old doctor with IBS and here's a good example taking the medication god i was feeling sick the same and nausea and stomach pain he altered them tried another lot and there was'nt much difference, so i take the IBS and the pain as that hits me besides.

ITS LIKE LIVING IN A NIGHTMARE

steve.b
03-27-2011, 10:14 PM
gringa1, i also have the lovely combination of lupus and fibro. (plus a few others).
for me i use plaquinel every day, methotrexate weekly. celebrex and panadol osteo for the swelling and pain.
this combination was suggested by my rhummy. ask your if it will work for you.
i do not like cymbalta, it has bad side effects on me.

craftkeeper
03-28-2011, 02:55 AM
Hey everybody, sometimes i forget which threads i've posted on, so if it takes me awhile to answer a question think nothing of it, it's just me.LOL. Tgal i had some blisters in my mouth but not in my eyes. But then again it could just all be some bad timing of new disease symptoms.. I was diagnosed years ago with Atypical connective tissue disease,Fibro and Thyroid. Now Lupus, but i've never taken any medication at all for any of it until now. I can relate to everyone on the issue of trying to figure out what is symptom and what is side effects. I know it seems wierd that it could be just a coincedence that the eye thing started three days after the Plaquenil, but it seems like after i was dx with Lupus more and more symptoms of the disease starting showing themselves quickly. Or maybe it's just that i am paying more attention to all of my pains and feelings now. Last night before bed i noticed my mouth feeling rather raw and small blood blisters coming up on my lower lip. Is it the disease, the medication or the half bag of dill chips i ate knowing better?[ By the way,just a tip,never eat dill flavored chips with blisters in your mouth. Whew ! Set me on fire.]

tgal
03-28-2011, 06:07 AM
Hey everybody, sometimes i forget which threads i've posted on, so if it takes me awhile to answer a question think nothing of it, it's just me.LOL. Tgal i had some blisters in my mouth but not in my eyes. But then again it could just all be some bad timing of new disease symptoms.. I was diagnosed years ago with Atypical connective tissue disease,Fibro and Thyroid. Now Lupus, but i've never taken any medication at all for any of it until now. I can relate to everyone on the issue of trying to figure out what is symptom and what is side effects. I know it seems wierd that it could be just a coincedence that the eye thing started three days after the Plaquenil, but it seems like after i was dx with Lupus more and more symptoms of the disease starting showing themselves quickly. Or maybe it's just that i am paying more attention to all of my pains and feelings now. Last night before bed i noticed my mouth feeling rather raw and small blood blisters coming up on my lower lip. Is it the disease, the medication or the half bag of dill chips i ate knowing better?[ By the way,just a tip,never eat dill flavored chips with blisters in your mouth. Whew ! Set me on fire.]

OHH Are you the person that spent a day out in the sun not long ago because that too can cause all kinds of issues. I am NOT saying that everyone handles plaquenil well and you may be one that doesn't, I just wanted to be the other side of the coin here.

I had to laugh at the "half bag of chili chips" comment!

craftkeeper
03-28-2011, 01:29 PM
Hey Tgal, yep that would be me.. See there are so many varibles to what is happening with me..My daughter [the Nurse} said it seemed fishy to her that it started 3 days after the plaquenil, but really my eyes have been really bothering me in the sun for about six months now, i've just never had the blistering.. I dont know how long it takes for it to get out of your system but i havn't taken it in about 9 or 10 days and i still have blisters even with the Prednisone. One thing i know for sure is the swelling had started staying out of my legs after just nine days of it and now that i'm not on it until i can get to the eye doctor, my legs are tight and swollen. I'm going to take the next three days and try to just relax and craft and not go outside. It was really cloudy today and i had to make a quck trip into the nearest town for supplies{28 miles] and even with the clouds and cover the light bothered me. And yes those darned chips about killed me, but determination drove me on.. creamy dill, much worse then chille cheese and i've still got a whole bag. Ha

tgal
03-28-2011, 02:46 PM
Hey Tgal, yep that would be me.. See there are so many varibles to what is happening with me..My daughter [the Nurse} said it seemed fishy to her that it started 3 days after the plaquenil, but really my eyes have been really bothering me in the sun for about six months now, i've just never had the blistering.. I dont know how long it takes for it to get out of your system but i havn't taken it in about 9 or 10 days and i still have blisters even with the Prednisone. One thing i know for sure is the swelling had started staying out of my legs after just nine days of it and now that i'm not on it until i can get to the eye doctor, my legs are tight and swollen. I'm going to take the next three days and try to just relax and craft and not go outside. It was really cloudy today and i had to make a quck trip into the nearest town for supplies{28 miles] and even with the clouds and cover the light bothered me. And yes those darned chips about killed me, but determination drove me on.. creamy dill, much worse then chille cheese and i've still got a whole bag. Ha

You are seriously too cute! Your posts make me smile every time!

It is very possible that it could be the plaquenil but it is also possible it could be many other things (like the sun). You really need to get to the doctor so they can figure this out. This darn disease is bad enough we don't need extra crud on top of it!

Please make sure that you are using sunscreen (at least 50) all over and also get a cream/gel for your face. Cloudy days don't lower the amount of UV rays so the clouds are deceptive. Get a good sunglasses for your eyes or at least one that blocks UV rays. I know it seems like a lot of work but you wanna make sure you can still keep eating those chili cheese chips!

Peridot20_Gem
03-28-2011, 05:16 PM
Hey everybody, sometimes i forget which threads i've posted on, so if it takes me awhile to answer a question think nothing of it, it's just me.LOL. Tgal i had some blisters in my mouth but not in my eyes. But then again it could just all be some bad timing of new disease symptoms.. I was diagnosed years ago with Atypical connective tissue disease,Fibro and Thyroid. Now Lupus, but i've never taken any medication at all for any of it until now. I can relate to everyone on the issue of trying to figure out what is symptom and what is side effects. I know it seems wierd that it could be just a coincedence that the eye thing started three days after the Plaquenil, but it seems like after i was dx with Lupus more and more symptoms of the disease starting showing themselves quickly. Or maybe it's just that i am paying more attention to all of my pains and feelings now. Last night before bed i noticed my mouth feeling rather raw and small blood blisters coming up on my lower lip. Is it the disease, the medication or the half bag of dill chips i ate knowing better?[ By the way,just a tip,never eat dill flavored chips with blisters in your mouth. Whew ! Set me on fire.]Hi craftkeeper,
Hows today treated you mate and hows your blister's and sores?? and by the way i do love your Avatar pic, it seems like we have a proper little craft woman on the site but good on ya i say if you have the skill.

craftkeeper
03-28-2011, 06:14 PM
Evening Peridot,how are you feeling tonight,morning whatever time you are in? I hope you are feeling better. I'm still feeling a little like poo with the blisters.. last night i had a blood blister pop up in my mouth{ guess you read about my potato chip fiasco] I got my papers for my eye doctor appt on the 8th and my Gp gave me a script for swish and swallow. I've been reading a few sites here and there and i see that alot of Lupus patients really have a battle with blisters or ulcers in the mouth.. My little Rheumy says it's all just part of the big picture of lupus and i can call if i need him but if not he'll see me back in 3 months. I'm trying to stay really calm with all of this but I hurt, i'm very uncomfortable in my own skin and really wanted to punch him in the mouth. But alas i am a southern Belle and i let it slide this time. Honestly i have nothing but awe and admiration for all of you who have had to deal with this kind of thing for so many years. These men apparently dont realize that on top of all of this i am in menopause. I just pray for all us. I'm finished ranting and raving now.

tgal
03-28-2011, 06:17 PM
Evening Peridot,how are you feeling tonight,morning whatever time you are in? I hope you are feeling better. I'm still feeling a little like poo with the blisters.. last night i had a blood blister pop up in my mouth{ guess you read about my potato chip fiasco] I got my papers for my eye doctor appt on the 8th and my Gp gave me a script for swish and swallow. I've been reading a few sites here and there and i see that alot of Lupus patients really have a battle with blisters or ulcers in the mouth.. My little Rheumy says it's all just part of the big picture of lupus and i can call if i need him but if not he'll see me back in 3 months. I'm trying to stay really calm with all of this but I hurt, i'm very uncomfortable in my own skin and really wanted to punch him in the mouth. But alas i am a southern Belle and i let it slide this time. Honestly i have nothing but awe and admiration for all of you who have had to deal with this kind of thing for so many years. These men apparently dont realize that on top of all of this i am in menopause. I just pray for all us. I'm finished ranting and raving now.

One of the first signs with me was mouth and nose ulcers. They hurt like all get out! You are my hero considering you had those mouth ulcers and STILL ate those salty chips!

craftkeeper
03-29-2011, 03:46 AM
Tgal i'm gonna blame it on the Prednisone munchies. Kinda takes me back to my Hippy days. Those of you who are old enough to understand know what i'm taliking about. So to those of you, which i assume are quite a few, who have experienced the the blisters and ulcers, i have a question.. How long do they last? So do they come and go with the the disease or is there a medication that works to clear it up? Gp gave me the swish stuff. I know the Plaquenil is supposed to help with it but i'm off it until the 8th.

If one could speak directly to the doctor and not have to go through thier slightly trained staff, i might get somewhere.. when i went to the Rheumy last time my eyes and mouth were full of blisters and i was dressed like Dracula. The little gal at the front desk said" Oh you dont look bad at all we were expecting something much worse" When i told her i was experiencing chest and ribcage pain when i breathed she told me my Gp would have to treat any heart problems. My rheumy just says "It is the Lupus" and gave me Prednisone so i just assumed this was the normal treatment for everything.
Oh ''I sorry he did give me a list of things i could do for dry eyes and mouth.

Peridot20_Gem
03-29-2011, 05:45 AM
Evening Peridot,how are you feeling tonight,morning whatever time you are in? I hope you are feeling better. I'm still feeling a little like poo with the blisters.. last night i had a blood blister pop up in my mouth{ guess you read about my potato chip fiasco] I got my papers for my eye doctor appt on the 8th and my Gp gave me a script for swish and swallow. I've been reading a few sites here and there and i see that alot of Lupus patients really have a battle with blisters or ulcers in the mouth.. My little Rheumy says it's all just part of the big picture of lupus and i can call if i need him but if not he'll see me back in 3 months. I'm trying to stay really calm with all of this but I hurt, i'm very uncomfortable in my own skin and really wanted to punch him in the mouth. But alas i am a southern Belle and i let it slide this time. Honestly i have nothing but awe and admiration for all of you who have had to deal with this kind of thing for so many years. These men apparently dont realize that on top of all of this i am in menopause. I just pray for all us. I'm finished ranting and raving now.Ado mate,
I'm feeling the same as perusual very rare i have the odd day where i pick up abit and i've noticed that's only through spasms. I was on the site at 2am this morning and i thought pop your valium and hit for the wooden hills.lol
The only blister's i have are around my mouth and they look like cold sore's, then they start peeling and leave patches by my mouth as they're easing off, sorry mate i've not read about the chip fiasco.
Well i hope everything goes ok with your eye doctor and you'll let us know how it went. Well i've told you what blisters i have, i've been lucky so fare with no mouth trouble except a metal taste, it's funny my hubby ah got Lupus but since day one of knowing him he suffers with mouth ulcers and when he gets them they dow half come big, so i do feel sorry for you concerning them with what i see with my hubby is enough to know what your going through and other's.
I am laughing mate because you seem like me get stressed quick with these rheumo doctor's, i never saw mine last time as you know and the blood specialist kept popping in and out to see the rheumo, i actually ended up saying i'm off for a fag for 5mins but he would'nt let me leave the room till he came back it's all so flustrating.
I said to my hubby lastnight while sitting in the livingroom, i'm so totally fedup and depressed i said not with my home life or you, just this lot in general because from one day to the next things am hitting ya from one way or another and being uncomfortable in your own skin is a good way of putting it because if your like me my skin feels so sore.
Well like i said symptoms started with me at 5yrs old then things got more at 14 but it's only been the last fews years that it was the lupus with caused me aload of stress and worry with so many symptoms. You can't beat ranting and raving to get it out your system and my GP as tested me 3 times from 39 till now at 42 for the menopause and the tests have come negative.

Well i hope your day ah to bad mate and i'm sorry for what your going through. xxx

Peridot20_Gem
03-29-2011, 05:52 AM
One of the first signs with me was mouth and nose ulcers. They hurt like all get out! You are my hero considering you had those mouth ulcers and STILL ate those salty chips!Hi Mari,

When you mention nose ulcers, i have them on the edge of my nose and they burst with fluid in them and then when they're try they send sores up my nostrils, is that identical to how you have it but proper inflammed red look?? as i've got it bad now with my left nostril and they dow half look terrible and ever so sore. xxx

tgal
03-29-2011, 06:44 AM
Hi Mari,

When you mention nose ulcers, i have them on the edge of my nose and they burst with fluid in them and then when they're try they send sores up my nostrils, is that identical to how you have it but proper inflammed red look?? as i've got it bad now with my left nostril and they dow half look terrible and ever so sore. xxx


Terri, it has been a long time since I had them in my nose (because the plaquenil took care of the nose ones) but I don't remember those being red at all. They started out just at the edge of my nostril at the first one broke 3 more came in its place! So I had mouth and nose ulcers but what I fought in my eyes was styes! You know it was almost a year before I realized that the styes were related to the Lupus thing. I only figured it out when one day I figured out that I hadn't had them since the plaquenil! Looking back they may not have been styes and/or I was just bad with anything representing pimples! They would hurt so bad and I could see what I thought was a head when I pulled the eyelid or undereye area so I would "pop" them. No WONDER I was getting more and more!

Anyway, knock on wood. I haven't had any of the mouth ulces since I went on the plaquenil and prednisone... which leads me to my next post LOL

tgal
03-29-2011, 07:00 AM
Tgal i'm gonna blame it on the Prednisone munchies. Kinda takes me back to my Hippy days. Those of you who are old enough to understand know what i'm taliking about. So to those of you, which i assume are quite a few, who have experienced the the blisters and ulcers, i have a question.. How long do they last? So do they come and go with the the disease or is there a medication that works to clear it up? Gp gave me the swish stuff. I know the Plaquenil is supposed to help with it but i'm off it until the 8th.

If one could speak directly to the doctor and not have to go through thier slightly trained staff, i might get somewhere.. when i went to the Rheumy last time my eyes and mouth were full of blisters and i was dressed like Dracula. The little gal at the front desk said" Oh you dont look bad at all we were expecting something much worse" When i told her i was experiencing chest and ribcage pain when i breathed she told me my Gp would have to treat any heart problems. My rheumy just says "It is the Lupus" and gave me Prednisone so i just assumed this was the normal treatment for everything.
Oh ''I sorry he did give me a list of things i could do for dry eyes and mouth.

Ohhh I remember those days so well and yes, I know the craving again now! If this keeps up I will be unable to leave the house by 2015 because I won't fit through the door!

Now on to something a bit more serious. If at all possible find a doctor (most likely GP) who is able and willing to be core for your doctors. This is more than just having the notes sent to his/her office it means that he/she will look over all the information and put it all together! As you already experienced most of the specialist only deal with what fits in their specialty. The problem with that is that too often things get overlooked or the big picture gets lost. Some symptoms my affect two specialties ie, rhuemy and neuro but they can be lost because rhuemy only hands his stuff and neuro his. If you have that middle guy to put everything together he sees it all and says "wait! something is happening here because both of these things are happening"
It may help in your overall treatment!

Heading off to look for some food and it is all your fault! lol

truthseeker11
03-29-2011, 09:51 AM
Sounds like you have a good dr there---i live in Tulsa Oklahoma--but i would travel to Houston if need be to get a good dr---could you send me his name and # ----would really appreciate it ---thank you

Peridot20_Gem
03-29-2011, 12:24 PM
Terri, it has been a long time since I had them in my nose (because the plaquenil took care of the nose ones) but I don't remember those being red at all. They started out just at the edge of my nostril at the first one broke 3 more came in its place! So I had mouth and nose ulcers but what I fought in my eyes was styes! You know it was almost a year before I realized that the styes were related to the Lupus thing. I only figured it out when one day I figured out that I hadn't had them since the plaquenil! Looking back they may not have been styes and/or I was just bad with anything representing pimples! They would hurt so bad and I could see what I thought was a head when I pulled the eyelid or undereye area so I would "pop" them. No WONDER I was getting more and more!

Anyway, knock on wood. I haven't had any of the mouth ulces since I went on the plaquenil and prednisone... which leads me to my next post LOLMari,

Mine start at the edge of my nostril, this one as also and it's so sore, then as that's healing it spreads up my nostril but 2 nights back i found one inside the other nostril i thought oh god here i go agin.lol and it diappeared over night but mine go really red but it's funny i'm having quite a few nose bleeds down that left nostril also.
Those styes [pimples] i've had them on the lining of the eye at the bottom and when i've had them i've thought they was pokes and honest a god i've rubbed them with a 22ct gold wedding ring, they had used to go straight away but they don't now.

The stuff this disease causes is terrible. [I've thought of knocking my coffin up ready] lol

gringa1
04-03-2011, 08:09 PM
Hi Terri, one thing I forgot to mention to my rhuemy, I have sickle cell trait, do you know if that would have some impact on my lupus?

steve.b
04-03-2011, 11:16 PM
to gringa1

from what i have read.
it can worsen the effects of some deseases.
it can make fatigue related conditions more severe.

therefore it may make some symptoms of lupus more severe.

i would mention it to your rhuemy.

Peridot20_Gem
04-04-2011, 02:01 AM
from what i have read.
it can worsen the effects of some deseases.
it can make fatigue related conditions more severe.

therefore it may make some symptoms of lupus more severe.

i would mention it to your rhuemy.Hi Steve,

With the affects i had off the plaquenil while on it, although it did my skin good and i do recommend for other's to try it and the effects coming off it i've just booked in to see my GP this afternoon to see what he says because my heads been telling me to give it a 2nd shot since talking with mari and other member's finding it good but i just need my GP's opinion on it because it cleared my skin up better and my hands and since half way off it my nose, eyes and hands have got abit worse than before and i just can't stand the soreness plus my spasms in my legs have got worse.

Peridot20_Gem
04-04-2011, 02:31 AM
Hi Terri, one thing I forgot to mention to my rhuemy, I have sickle cell trait, do you know if that would have some impact on my lupus?Hi Gringa,

It won't help tiedness because you get that with sickle cell which is anaemia which i also have it does'nt help the Lupus one bit it makes you more tied lack of energy and there's also joint pains from both plus the sickle cell can cause sytemic Lupus which i have, i've added some info below for you.

Sickle cell disease (SCD) is a prevalent genetic disorder that includes sickle cell anemia (hemoglobin SS), hemoglobin SC, and hemoglobin Sb-thalassemia. Patients with SCD present with a defective activation of the alternate pathway of the complement system that increases the risk of capsulate bacteria infection and failure to eliminate antigens, predisposing these patients to autoimmune diseases. The authors describe three patients with SCD that developed systemic lupus erythematosus (SLE). In all patients, SLE diagnosis was delayed because symptoms were initially attributable to SCD. Physicians should be alerted to the possible development of SLE in patients with SCD to not delay the diagnosis and start appropriate treatment.

Peridot20_Gem
04-04-2011, 08:46 AM
Hi went and saw the doctor today explained the effects of the plaquenil to my GP and also my skin getting worse coming off it and he's asked me to mentally try and cope with it for another 2months to see how i go, knowing i get my depression bad but i'm giving it a furthur go and while i was there he checked my lungs and heart.
I'm being refered for a full scan all over my stomach and also for Gallstones and i'm also being refered back to another specialist to get a cyst removed from my face which should have happened 2yrs ago but i had my operation cancelled twice.

I'm going to give it my best shot now in the next 2mths with the plaquenil as it did my skin good and started easing my spasms.

magistramarla
04-04-2011, 04:00 PM
Terri,
Good luck with it. It really helps so many of us, so I certainly hope that it helps you in the long run.
Hugs,
Marla

Peridot20_Gem
04-05-2011, 01:07 PM
Hi Marla,

Thanks for the lovely support mate, it was helping my skin but nothing regarding the joints yet but it's only early days, 9wks this week i've been on it but it was helping my spasms and while coming off the tablet slowly the spasms the last 2 days have gone tight in my calfs again.

I really hope your fine marla. Luv Terri xxx

craftkeeper
04-05-2011, 03:06 PM
Terri i really hope it goes well with you this time. Friday after my eye doctor appt i hope to be able to start it again. I think that it really was helping my swelling in just the short time i took it. Keeping my fingers crossed for you.

Peridot20_Gem
04-05-2011, 05:38 PM
Ado mate,

I've got to try and master it as it was helping my skin, just needed more time for it to show on the swelling of the joints.
Well i really hope friday goes well for you and your passed to start it also and i'm touching wood this end for you mate and the very best of luck.

~Hugs Terri~ xxx

steve.b
04-06-2011, 06:18 AM
teri, as i have said in other threads,
plaquenil is a desease modifying drug.
what that means to us is it takes time for the drug to have its full effect.
it has to modify all of our body for full effect.
for some of us it takes weeks, others months, untill this happens, the side effects will not stabalise, as the effects have not been fully realised within us.

please stick with it.
i know it has helped me tremendously.

Peridot20_Gem
04-06-2011, 08:26 AM
Hi Steve,

I've got my head strongly based on achieving it mate because it was helping my skin with the raynauds after 8wks but refering my joints it can take up to 6mths or more like you said.
Well steve it's the side affects i need to get my head around i vomited once last week and it happened again on monday and yesterday and today my bowels have gone looser but it's my breathing that concerns me and i start panicking.

Cheers steve for your support.

steve.b
04-06-2011, 08:49 AM
talk to your gp.
i suffer from some of those.

for vomiting - maxolon 10mg
for loose bowels - metrogyl
for anxiety - endep and lexapro

Peridot20_Gem
04-06-2011, 09:40 AM
Steve, if i start vomiting to bad or with the lose bowels then i'll have to see my GP because i can't afford to loose anymore weight in general.

gringa1
04-06-2011, 12:10 PM
Morning Steve, I also did some reading, from what I read it sounds like there's not enough study to show the relations to lupus (I have the trait not the disease). I definitely need to learn more about this.
I recently donated blood and let me tell you..... it kicked my butt, I was so wiped out, the rest of my day was shot.

Peridot20_Gem
04-07-2011, 04:23 PM
Hello gringa,

How you feeling now mate after donating the blood do you feel abit better. xxx

steve.b
04-07-2011, 05:43 PM
gringa1,
i hope you advised the blood centre of the medication you are on.
a lot of us can no longer donate blood or be an organ doner.
there is a post about this, it was only about 2 weeks ago.
if you can, you are lucky. enjoy giving something back, but rest the next day.

Peridot20_Gem
04-07-2011, 06:02 PM
Steve,

Your right with what you say because if i gave bloody i know i'd make someone seriously ill plus they don't have it off you over here unless your totally clean in your system and then it's tested but in the 80s they made a serious cock up with blood which caused the epedemic of aids and hepatitis c bad in people and there's been some paying out off the goverment to people who have took seriously ill.

gringa1
04-07-2011, 10:04 PM
Good evening Terri, I'm doing better, slow week my hands hurt really bad, the pain on knees have been waking me up. My forehead feels like I"ve been hit.
I've noticed the pain is more intensed 2 weeks before my monthly......not fun :(
How are you doing Terri.

gringa1
04-07-2011, 10:10 PM
Hi Steve, thanks for your concern, but as of right now I am only on cymbalta and Ibuprofen 800mg. I'm going to talk with my rhuemy tomorrow to see when I can
start taking the plaquenil. But, I also read I one has CFS not to donate blood, so yeah,this was my last time donating.

Peridot20_Gem
04-08-2011, 12:51 PM
Good evening Terri, I'm doing better, slow week my hands hurt really bad, the pain on knees have been waking me up. My forehead feels like I"ve been hit.
I've noticed the pain is more intensed 2 weeks before my monthly......not fun :(
How are you doing Terri.Evening gringa,

Sounds like your having it abit bad mate and that's one things i've never noticed it getting worse before a monthly funny that.

My hands are swollen bad all swelled out and every morning my knees and legs ache, if it's lovely outside i go out there and let the air get at them, i've found it carms mine down abit but the pain you'll never be able to tell anyone else, only those who have it know what your going through and i well understand.
How did thing's go with your eye test to start on the plaquenil??

gringa1
04-09-2011, 12:58 PM
Hi terri, my eye test went really well, the doc said everything looks great, gave the green light to start the plaquenil. To be honest with you, I am really scared to start the plaquenil
because of my work, having to sit 2-3hrs. for surgery and when the diarrhea hits, what do I tell my doctor, "oh wait I'll be back",haha, also heard alot of weight gain with this med. You know, when I go to sleep, I wake up hoping this was just a bad dream and it's gone. After talking with you about my feet, alot more thing are making sense, as to why I felt this, or why this is happening. Another thing I have which started 11/2 yrs. ago is vertigo and I wondered if thats why I was getting dizzy spells in the past. My hands tingle alot, like the want to go numb, my knees always hurt more so at the end of the day. One thing I didn't ask my my rhuemy, is my lupus mild....all she said "you have it, but lets not worry about it".
Terri, so much about me my friend, how are doing, and if you mind me asking...how old are you. I just turned 47.
You seem like person with such high spirits,even with your illness, and I admire that :) Bertie

Peridot20_Gem
04-09-2011, 04:51 PM
Hi Bertie,

Well i'm pleased your eye test went fine. I can see where your coming from concerning the toilet my bowels have got looser but not to diarrhea stage as yet but my skins gone better already i have noticed that and it was linda who mentioned it to me she takes it at night, well i started it at 2pm because of my other meds and i can't seem to get past 6-30pm as shakes start but since it's been later the affects i had bad before i not hitting me so much now except for mood swings.
Well i've been on it 9wks and it's gone total opposite with me concerning weight but i'd say is it other meds that other's are on may be causing weight gain because i've read where alot have gone thin with the drug and that's me included.
I've never had vertigo but Lupus can cause it another factor to the condition but i do have the dizzy spells and have even passed out with mine.
I have the tingling in my hands and mine do go numb but the raynauds have alot to do with that and you ah got to mention aching joints, i'm glad to stick my legs up after tea.
Well i asked my rheumo about me having Lupus no answer and when i attended the day unit asked the blood specialist because they all have your notes and he told me 3 times you don't really want to know and when i saw my dermatologist who said i had raynauds then refered me, i told him how they was'nt saying if i had Lupus, i said you have my blood results i just want someone to step forward and comit themselves and he did, he said you also have Lupus but he's a great bloke to work with anyway.

Well besides me being abit nasty with the plaquenil, over the weekend although doing stuff hurts i can't keep putting on my hubby, so i helped with the front and back garden yesterday and today, wore 50 block, sunglasses plus a cap and why i bothered christ knows, i look like a chicken way over cooked and all my skins itching but no hurting as burning. I'm 42 coming 43 this year.

Well i dow think i have high spirit's but other people have said i have because of what i've gone through plus the states they've seen me in but i'm having a right game grasping the dealing's of this Lupus.

Bertie have a lovely day tomorrow and i really hope your aches ease abit, i know it sounds soft but i always hope that for every member going they have a better day.

Hugs Terri xxx