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Razzleberry
05-17-2008, 02:58 PM
So I saw the rheumy Fri and asked him point blank why if my labs are all good did I just have the flare from hell and if the labs are good doesn't that mean I am in remission?

Nope that's not what it means. He says that the labs are good because I am taking my medicine like a good little girl and if I stopped doing that the labs would be all screwy. So much for my theory that I am healed :-)

Just thought I'd share ....so pop those pills guys, they apparently do help!

sits_inthe_corner
05-17-2008, 05:48 PM
Hugsss Razzleberry

I'm about to have words with my rhueym on the 28th, she wants me on plaquenil and I dont want to stay on it. I know darned well that she's going to spit her favorit line at me. "It's doing more for you then you know"

Well if I'm NOT feeling ANY different they what the heck is it doing for me? Oh I'll be stopping it alright. so there :P

That's probably when she's going to tell me not to come back...woohoo!

SwirlyGirly
05-17-2008, 08:37 PM
So not fair I take my meds very accurately and I haven't missed a pill in over 6 months, and my tests are all screwy all the time! :?

SITC, you really need a diffferent doctor! I give new meds 3 months. If I don't notice a difference, I'm done. It is your life, you don't have time to waste on something that isn't doing it's job for you. Stand firm!

sick n tired
05-17-2008, 08:51 PM
Hey Razzleberry,

I, like you, assumed if my labs were good, then I would be "healed".

Swirlygirly, the problem with giving plaquenil only 3 months is because it takes at least 6 months to work on some of us...of course, I think I remember that SITC has been on for that long or longer.

Hey Sitc, my doc is thinking about putting me on another antimalarial. It won't be until I get back from the trip, because he wants me home when I start it. More monitering of the blood and such. Perhaps yours might look into something like that.

SwirlyGirly
05-18-2008, 09:11 AM
Yeah, I shoulda calmed down a bit before responding. Just brought up some memories for me. I usually ask the doctor how long it should take for medication to begin to be effective. Then I double check with the pharmacist. For most meds I've been on 3 months is plenty of time. You are right that Plaquenil can take up to 6 months. But as I said, if you've given the medication the time and it is still not working, you should talk to your doctor about your concerns about it.

Thank you for calling me on that, Sick n tired... :oops: You were very right!

Razzleberry
05-18-2008, 10:57 AM
SITC ...don't be so quick to give up the plaquenil. I thought it wasn't working too and convinced the doc to let me stop. Within a week my face was so puffy my eyes were nearly closed and I was achy and tired and red. So it seems it does work even when you think it isn't.

Just me 2 cents.

sits_inthe_corner
05-18-2008, 02:44 PM
Razzleberry

Your 2 cents are most welcome any time :)

I feel no different now than when she put me on this drug back in December. I may have a bad reaction to comming off the drug but I will wonder if that's the drug messing with my system, perhaps you need to detox. I could be 100% wrong. Lord knows I've been wrong about plenty of things in the passed and probably will be again.

There's not one single thing I can say is any better since I've started this drug.

I've been on arthrotec for quite a while and I can tell THAT drug is helping cut my pain in half. I was stupid enough in the beginning to think that if I took that drug till I got control back of my life that I could stop taking it and be okay. My family doctor let me try and she didn't rub it in too badly when I came shame faced back and asked her to please write me out another prescription for the arthrotec.

I don't want to try anything harder either. I just want to continue along the way I am. I'm managing my pain, I'm working out and starting to lose weight. My blood presure is under control. All this stuff was in place befor she put me on the plaquenil yet she wants to credit it with how I'm doing.

Actually I was kind of shocked that she wanted to mess with my meds and I asked her why, she said cause she thought I could do better. Fair enough...I gave it a shot and if it had given me more of myself back then yippee waahoo I'ld keep taking it. But why keep taking something that's not making a difference and can start to affect my health in a bad way as it builds up in my system?

I can hear ya all snickering at the corner lady wading into the river of denile :P

I dont know what to think...I'm confused and worried; afraid of making the wrong choices.

I'm scared....scared of the meds...scared of my body...just plain scared...

But I am thankful for this board, for letting me vent.

I am going to ditch the plaquenil...and hopeful I can work through what ever happens when I stop taking it. If it takes 3 to four months to build up in the system then it will probably take that long get the heck out of my body.

I've hear other people say they were sorry they stopped it, had to wait for it build up in their system again before they felt better.

It's not a chance I would take if it was helping me.

Gawd...some times I feel like a little child who just doesn't want to play by the rules.

Thanks for letting me spew :)

WantItGone
05-18-2008, 04:06 PM
SITC ...don't be so quick to give up the plaquenil. I thought it wasn't working too and convinced the doc to let me stop. Within a week my face was so puffy my eyes were nearly closed and I was achy and tired and red. So it seems it does work even when you think it isn't.

Just me 2 cents.

Totally agree. I went without it for a week because I was doing the master cleanser. Goofy me, I thought that since it took 6 months to kick in a week w/o wouldn't hurt. I was wrong! My take is, we're better off w/it even if you don't necessarily feel drastically better.

Razzleberry
05-18-2008, 04:10 PM
Yeah SITC, plaquenil seems to be the silent weapon in the this whole lupus struggle. It really seems like it's doing nothing but just like my labs ...you're feeling ok because you're taking it ...it seems anyway. Or give it a shot ...stop it and see what happens. Maybe you'll be the same ...or maybe ...you'll be puffy and red and achy :-) just like some others we know :-) :-) At least you'll feel like you're in charge and that helps too; and you can always go back on it if you find it really has been helping.

sits_inthe_corner
05-18-2008, 05:31 PM
:lol:

I feel like a chicken on Colonel Sanders' farm making a break for the electric fence with the rest of yas sayN< "Told her not to do it" but I'm making a break anyway hahahahaha.

Just like when I snuck out of the house when I was 12 just cause I wanted to see what it was like that late at night out on the streets :shock:

I wouldn't listen to reason then either. :silly:

I guess I'm just afraid that I don't really need this drug so I want to find out for sure. I know she'll just rattle off her pat warning. Maybe she's right...but I guess I'm the type who has to learn by doing.

I see her on the 28th ... when I go off the plaquenil I'm gonna give it 4 months to get out of my system and then I'll know for sure. One way or the other.

racinie
05-18-2008, 06:07 PM
I thought plaquenil was supposed to be one of the most benign lupus meds...
The idea of just going off of something makes me nervous..
I hope whatever you do works out! :?

sick n tired
05-18-2008, 09:46 PM
SITC,

Not everybody is helped with the same thing....if I have learned anything it is that...what works for me might not for you.

Like I asked earlier...is the doc thinking about putting you on another anti malarial? or at least something to take plaquenil's place?

Hope all goes well when you go off,

sits_inthe_corner
05-19-2008, 01:07 AM
racinie

plaquenil is one of the more gentiler drugs they use. It can still have some nasty long term effects but with proper supervision it can be monitored.

I have heard some people say truly wonderful things about plaquenil. I'm sure for those who it helps the relief must be immence.

But for me, I still have my rashes, and all my aches and pains that I had going into it. I dont feel any worse, but I dont feel any better.

Oluwa
05-19-2008, 11:34 AM
SITC...

I need to have my 4 cents worth. I am long winded..usually.

My take on Plaquenil...I don't know... :shock:

When I started it, I was coming out of a flair without cocktail rings I believe. I felt wondrous in the beginning..then it started to peter out. My energy plummeted, my pain wanes on. It seemed to have lost its effect about October of last year. I recall I may have had a real normal day here but not there since dosing.

Since dosing my diaper face rash never completely disappeared. Always been some reminisces of it. I think Plaquenil controls the strength of my flairs without platform shoes. I haven't had any hives or nose hole sores since dosing. I am grateful for that.

Since dosing I started to get my scabby hinder rash. Update as of today...it is gone. Belly rash, comes and go. Update as of today. It is there. Both started after I took Plaquenil. I am not grateful for that.

Since dosing I haven't ....been unable to walk or unable to hold anything in my hands. They have been painful, yes, like today...but nothing has been to the point when I was bedridden with crippling pain. I am grateful for that.

Today I am confused..wondering if I have FMS also and it isn't just IT toying with me in different ways. I don't want to go on scaryroids again. Many of my symptoms I've complained of fit FMS too or could it be my DDD in my back. For me it seems hard to distinguish joint pain and tender point pain.

Like my lower back and hinder for instance..is it that I feel joint pain, sciatica pain, degenerative disk disease, failed back surgery or possible FMS. And is my chest pain from my girlfriend Gerdie or FMS? I've always complained it felt like an arrow went through my chest and out through my back. Pain directly aligned with one another...

My hands and feet hurt...my shoulders too. Along with my chest, back, neck, knees, forearms, hinder...no elbows on the list today....what is it, who am I, where am I I wonder. Is it really Plaquenil petering out..

Have you researched FMS as a possibility too..having both FMS and IT?

I have a Rheuma appointment on the 28th and my NeuroSpine this Friday...maybe between them both they can sort it out for me.

I also read, brand name Plaquenil seems to work better on some than the generic. I am on brand...maybe that is why mine seemed to do wonders so quickly.

Sometimes I wonder without it, Plaquenil, where would I be...in the dirt?

As of late I haven't felt the greatest, nor the worst..just enough to keep me piled up on the couch with a long face these last several days.

I think the light the dentist used to look into my mouth, the big overhead did something to me, a reaction. I left there all red that you could write on my skin, on my chest...it turned white as I wrote Help me.... You could see all the little capillaries. They reminded me of red lint on a white shirt...masses of them. Like what a sunburn would do.

Today it still writes white, but not as red...whas dat I got?

See, my take Plaquenil... I told you I don't know...:shock:

Hugs,
Oluwa

sits_inthe_corner
05-19-2008, 12:08 PM
Neither do I Oluwa, but I'm going to find out. I'm going off it.

I'm not on the brand name stuff, I'm on the genaric. Not sure why ... but it's probaby because that's what my medical plan wants me to have. Grrrrrr. But that doesn't matter as I'm going off it anyway.

I could be wrong, and perhaps I will regret my decision...time will tell. But I don't think I would be taking very good care of my self if I stayed on it while I dont feel any different than before I started it.

Why should the drug companies make money off me, when their product isn't doing anything for me.

I'm sorry you haven't been feeling well, seems to be alot of that going around right now.

Hugs to ya, rest up sweety ... I hope you feel better soon :)

Oluwa
05-19-2008, 12:58 PM
SITC,

I know exactly what you mean, being on a drug that isn't doing anything medically for you except causing possible health damage. I agree that isn't caring for yourself...I've stopped other drugs for the same exact reasons.

Me, I am afraid to stop Plaquenil, fearing the worse has yet to come and will make ITs presence known more so if I don't dose. I want to test the waters, but I am afraid...

I've contemplated no Plaquenil, yes Plaquenil many times...tossed the idea out to my husband. No way, he exclaimed. It stills rolls around in my head..

On the 28th we, you and I can compare notes.. I have an appointment that day too..

I ask for brand name when submitting my prescriptions to the pharmacy. Maybe in the USA it is different, in that we have a choice. Maybe the only difference between generic and brand is the cost and not the drug.

I notice too, many of us are keeping a low profile. We came out like a flurry when the site came back to life, then we petered out..I pray we all feel better...

How are the cankles?

Thank you for the hugs..here is one from me...squuuuuuuuueeze...
Oluwa

sits_inthe_corner
05-19-2008, 01:09 PM
Oluwa??? what are cankles :lol:

I think we are all feeling a bit Yick right now...or perhaps I'm reading my state of mind into others.

I have to agree with your hubby, Oluwa, you've got enough going on right now that if the plaquenil is helping keeping the nose and mouth sores away they Yippee...keep them gone.

For me right now my biggest problems are some joint pain, tiredness, and a bit of swelling. That's about the same as I've been for the past year with a few flares of rosacea and the occational knee cap breaking I aint going anywhere pain.

I don't have the basket full of goodies that you are trying to deal with. So if there is a coming down period for getting off the plaquenil I think I can handle it. You're in enough misery so let me jump first and I'll let you know how I do with it.

If I land with a big ol Ta Da! I'll let you know. But if I start hurting worse and whining my tushie off you'll know to sit tight :)

Oluwa
05-19-2008, 01:14 PM
Cankles...where your ankles and calves look like one. Water logged ankles...

Someone used the word cankles here and I roared. I am assuming that is what it means...

Have you tried to put anklets on your cankles?

Love,
Oluwa

sits_inthe_corner
05-19-2008, 02:01 PM
First let me say, I love your new smiley :lol: that about sums it up hahaha

I have several ankle bracelets that dont fit over my compression socks heehee, I could start a new trend. Sock jewlery.

Canklets...I like that. I stopped wearing my compression socks on Friday. The pain is slowly building but so fare the swelling has stayed down. I'm back to work tomorrow, after a long weekend. We'll see how I do with a full day of work and no compression socks.

Now if I could just get my cat to stop curling up on my knees in the middle of the night. OUCHIE

Razzleberry
05-19-2008, 06:19 PM
Oluwa you crack me up! You really wrote "help me" on your red rashy chest?? Hilarious. A sense of humor is sure helpful with this darn disease isn't it?

Oluwa
05-19-2008, 06:38 PM
RazzleBerry..

I did that for my husband when I showed him my red chest. Just like a sunburn when you press it...white with red all around.

SITC..

I would buy your sock jewelry, will it be pill resistant. Pilling up my Gold Toes?

Hugs..
Love,
Oluwa

cheryl_v
05-19-2008, 07:11 PM
Where would you buy compression socks and how much do they cost. I just can not get my feet to stop swelling and hurting lately. it seems to be endless swelling, pressure and pain. Those socks sound as if they might help somewhat.

Suzique
05-30-2008, 12:05 PM
Oluwa and Sits, I think the "cankles" might have come from me. That is what my sweet hubby affectionately calls my lower legs. There is no curve or shape, just straight down from calf to heel (most of the time). Due to poor circulation. Anyway, I do love the word. It makes me chuckle instead of feel depressed. Tony does that a lot. He has little words and phrases for things to make "light of it" and help me to see a brighter side. By the way, Sits, he was born in Calgary and raised in Calgary and Victoria. That is what brought us to Seattle - it was as close to his home as he could get me.

Susan

mnjodette
05-31-2008, 11:02 AM
Well, here's my contribution, SITC.....

I am on 11 prescriptions right now - Lord knows what that's doing to me long-term, and no wonder I'm nauseated much of the time and my tum-tum feels like $%&$#. So, I've asked my rheumy time and time again -WHAT can I quit taking without feeling like I've been run over by a train? Or landing in the hopsital again? Plaquenil seemed like a likely choice to me. She said she's had so many patients who thought stopping plaquenil was a logical choice. It's often one of the first meds prescribed for lupus, so seems like it should be the first to go, huh? But she said nearly everyone has the same experience - they just didn't realize that it was preventing symptoms from getting worse. Maybe seemed like it wasn't doing anything...but turned out it was doing a lot. So, we're looking at reducing (maybe eliminating!) some other meds to try to simplify my 'medication regimen'.

So, there's my 50 cents, SITC. I can sooooo relate to wanting to stop a medication. I want to be off 'scaryoids' (I love that word, Oluwa!) and immune suppressants and colchicine and....and....and.... I hope you can stop the Plaquenil without one, single negative effect, SITC. I'm rootin' for you, even though I'm just a little scared for you, too.

Jody

sits_inthe_corner
05-31-2008, 01:15 PM
:roll: I be stayN on da plaquenil till at least November. Doc said my blood work was too picture perfect for her to let me stop it. I suppose that's good news but it brings me back to what's actually working form me. Good diet and life style? Cause my pain levels haven't changed that much. Yes I'm a bit better, but not THAT much better...whine whine whine ...wine, sure why not :)