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View Full Version : Hi everyone, new to site and full of questions



gringa1
03-22-2011, 08:26 PM
I was recently diagnosed with lupus about 6months ago, I thought I was getting arthritis turns out lupus, epstein barr virus, fibromyalgia. Most of my questions are being answered as far as previous symptoms.... headaches, joints aches (knees), sensitive to sun, vitamin D low taking 50,000IU 1 tab a week for four weeks ( this is my second dose).
My forehead hurts, joints on my hands become very red and swollen. My rheumatologist says if pain progress she wants to put me on plaquinel. Reading the side effects concerned about the brown spots one can get. But then again, I hear it's a good medication.

ruziska
03-22-2011, 09:06 PM
Welcome! I am relatively new to this site and I have found it to be invaluable! The people are awesome and extremely helpful.

tgal
03-22-2011, 09:37 PM
Hi there and welcome to WHL! We are so glad to have both of you with us!

Plaquenil is my savior. I didn't realize how much it had helped until I tried taking myself off of it for 2 weeks. Boy was I begging to get back on it! I do know that there are a few people that have issues with it but I personally never have. I think starting out I had a bit of stomach upset but that was fixed by putting some food in my stomach when I took it twice a day. Plaquenil is a first lime medicine for Lupus because it does such a good job with few side effects. There is a slight change of getting damage to the eyes however that is VERY slim on the doses that we take for Lupus. The eye issue is bigger when used for malaria because their dose is much higher.

When starting plaquenil you need to have an eye exam (and make sure you let the ophthalmologist know it is for plaquenil usage) before you start and then have 1 every year after to keep an eye out for any trouble. Also, plaquenil is not an overnight drug. It works very slowly and I couldn't figure out why I was taking it. I didn't see much happening until about the 5th month and I realized that I hadn't had that one rash in about 4 weeks, my knees were not quite as bad and I hadn't had the nose and mouth blisters in almost 2 months! Plaquenil works slowly and fixes things before you realize it. It takes 4 to 6 months for plaquenil to get completely in your system so I was put on it the first appointment I had with a Rhuemy.

Although there are some potential side effects the most common is stomach upset. If it was me I would start it right now because it does take so long to get in your system. The first line drugs for Lupus are plaquenil and prednisone.

Hope this info helped a little. Others will be by with their thoughts on the whole thing and if we don't answer all your questions please feel free to ask anything you want. Welcome to the WHL family! We are really glad to have yout

steve.b
03-23-2011, 02:19 AM
hi, and welcome.

mari is right, many of us swear by plaquinel.

look around at the other threads, see what others have already learnt.

welcome.

Southshore
03-23-2011, 07:24 AM
Hello. I have found plaq to be wonderful. It does take awhile to get into your system, but after two weeks I can feel the gradual effect of it. Personally,, I hate the prednisone, but it really has been a lifesaver to me and to most others on the site. It helped me get through the first and most horrible pain/stiffness I have ever had.

Take Care and let us know how you make out!

lovehubby
03-23-2011, 07:27 AM
It is a good med some people do not tolerate it but most do. I am glad you found us.

Peridot20_Gem
03-23-2011, 07:36 AM
I was recently diagnosed with lupus about 6months ago, I thought I was getting arthritis turns out lupus, epstein barr virus, fibromyalgia. Most of my questions are being answered as far as previous symptoms.... headaches, joints aches (knees), sensitive to sun, vitamin D low taking 50,000IU 1 tab a week for four weeks ( this is my second dose).
My forehead hurts, joints on my hands become very red and swollen. My rheumatologist says if pain progress she wants to put me on plaquinel. Reading the side effects concerned about the brown spots one can get. But then again, I hear it's a good medication.Hello gringal,

Welcome to our lovely family of the WHL and it's lovely to have you with us, there's so many threads on lupus and different affects it as on you plus if your ever feeling down just come on and vent away, it was the best thing i ever did.

I'm happy that alot of questions are being answered refering what your going through, i was diagnosed 2yrs ago but with ailments over the years they told me i was born with it and all those was connected to the lupus.

Refering your forehead hurting all that's to do with Lupus besides bad headches it can cause, the swelling of the joint's in your hands and redness i have that day after day it's actually your joints swelling and i also have it bad in my legs and knees especially.
I've been on plaquenil the last 7 weeks and so far i've had bad nausea, stomach pain, i've not had the brown spots so far.
Apparentley it's excellent treatment for raynaud suffer's like myself and it helps the skin alot and once in your system it eases the swelling, it's not done that yet as it can take upto 6mths before you see a change but i was told to also take 4000mg of parcetamol to help the plaquenil.

I've gone on the plaquenil as i refused to take steroids, i was on them a good while ago and they don't suite everyone.

It will be nice getting to know you and to see what option you choose, please keep us all updated.

Hugs Terri x

gringa1
04-03-2011, 08:24 PM
Hi Terri, I'm confused my primary doctor had start on cymbalta 30mg (samples), do you think I should have talked to my rhuemy first. After reading your post I feel better about
plaquenil. Thanks go out to all of you for the warm welcome.

magistramarla
04-03-2011, 10:07 PM
Hi Gringa,
Welcome to WHL. Mari gave you some great information about Plaquenil. It helps me, too. I can't take prednisone, since it damages bones and I have Avascular Necrosis.
I take Methotrexate once a week, as several others here do. It causes quite a bit of nausea, but it helps.
I hope that you soon find what works for you.
Hugs,
Marla

Peridot20_Gem
04-04-2011, 08:53 AM
Hi Gringa,

Have you seen anyone about starting the plaquenil and how you feeling in your health in general??

Hugs Terri xxx

gringa1
04-04-2011, 11:12 AM
Good morning Terri, other than my rhuemy and primary dr., thats it. In general, just aches on the joints.. my knees, hands and swelling in the hands, at times I've noticed my feet looking swollen, my feet hurt and feel very hot, by the end of the day there is so much moister. My hands are red and I feel heat coming through them,( if that makes sense). Very tired, had a very bad headache that last more than a month, forehead very sensitive to touch, earaches and jaw. Fatigue, just about every part of my body hurt. When I started the cymbalta, feelling alittle better. Still sensitive to the sun, I get red and itch alot. There are times I'm nauseous for weeks,(whatever that might mean). Yesterday and today noticed my headache wanting to come back. Noticed my vision is blurry. Bertie

Saysusie
04-04-2011, 12:06 PM
Hi Gringa1;
Welcome to our family :-) You have met some of our members and have been given some excellent advice.
Being newly diagnosed, it may take a bit of experimenting with treatments/medications until you and your doctors find a regimen that works for your particular Lupus. Each person's Lupus is unique to them, no persons will have the same symptoms, the disease will not progress the same way in any of us, nor will we each react the same way to medications. All of these things are unique to each one of us.
Plaquenil has been a standard treatment for Lupus and for many, it has worked well. But, as I mentioned, you and your doctors may have to try several different medications (along with the Plaquenil or instead of the Plaquenil) until you find a treatment modality that works for you.
Cymbalta, I imagine, was prescribed primarily for you Fibromyalgia. It is quite standard that doctors prescribe anti-depressants for Fibromyalgia pain. Cymbalta belongs to a class of medications called serotonin and norepinephrine reuptake inhibitors (SNRIs). The FDA previously approved Cymbalta for the treatment of depression, generalized anxiety disorder, and diabetic peripheral neuropathic pain. The agency approved Cymbalta for the management of fibromyalgia in adults in June 2008. It is thought that Many believe the pain is due to changes in the nervous system which cause nerve cells to fire off too many signals. This makes a person overly sensitive to things that would normally not be painful. Researchers think that Cymbalta helps calm down these pain signals by increasing the level of two naturally occurring substances called serotonin and norepinephrine. These substances, which are found in the brain and other parts of the nervous system, can affect mood and are believed to help control and suppress feelings of pain. Cymbalta and other SNRIs block serotonin and norepinephrine from re-entering cells, and therefore increase the levels of the substances in the rest of the body. This process is thought to improve mood and relieve pain in patients with fibromyalgia.
With reference to your other Lupus symptoms, your doctors may consider one of the immuno-suppressive drugs (if the Plaquenil does not give the desired effect after several months), such as Methotrexate. However, I am sure that they want to see how well the Plaquenil and the Cymbalta works on your symptoms and pain first.

If you read through the stickys on the top of each forum and also through many of the posts, you will find valuable information that will also help to answer many of your questions.
In the meantime, we are here to help you as much as we can and to let you know that you are not alone. Again....welcome :-)


Peace and Blessings
Namaste
Saysusie

gringa1
04-04-2011, 03:15 PM
Thank you your info. is very informative. All the imput I'm getting here is really helping me, again thank you. Gringa

Maggi
04-04-2011, 05:41 PM
Hi there...Sounds like you are going through what I went through when i was first Diagnosed. It is quite draining and painful physically and emotionally. Its tough to get to where you are steady with meds and stuff. But then again, I guess its never really steady. I have been on Plaquenil for almost 5 years and I have had absolutely NO symptoms, Unless they are so small i dont know it. And ive been on Methotrexate and all kinds of stuff, and plaquenil is the most mild. My advice would definitely be to go on it. Its one of the drugs that helps almost all lupus/RA patients to an extent. They say after a few years it can stop working but Its worth a try especially when its active. Hope you feel better!! I know the pain!!

gringa1
04-04-2011, 06:57 PM
Hi Maggie, and thanks. Well I guess it's worth a try plaquenil and cymbalta.
This goes out to everyone, I have not told my boss, don't know, I don't want him to think less of me. I work for a periodontist and we do lots of surgeries that are between
1to 3hrs. per pt. I love what I do, sometimes I feel so overwhelmed. But I am thinking of telling him when I return from vacation.
Has anyone felt the same??

Peridot20_Gem
04-05-2011, 12:48 PM
Good morning Terri, other than my rhuemy and primary dr., thats it. In general, just aches on the joints.. my knees, hands and swelling in the hands, at times I've noticed my feet looking swollen, my feet hurt and feel very hot, by the end of the day there is so much moister. My hands are red and I feel heat coming through them,( if that makes sense). Very tired, had a very bad headache that last more than a month, forehead very sensitive to touch, earaches and jaw. Fatigue, just about every part of my body hurt. When I started the cymbalta, feelling alittle better. Still sensitive to the sun, I get red and itch alot. There are times I'm nauseous for weeks,(whatever that might mean). Yesterday and today noticed my headache wanting to come back. Noticed my vision is blurry. BertieHi Bertie,

Evening.lol your like me refering doctor's my GP is great and on the ball, my rheumo is rubbish only saw him once and the last time was the blood specialist and i have to wait 6mths each time and if i need help in between i have to phone the sister who's linked with the rheumo and if your not well they have you in the day unit.
The swelling of the hands, knees and occasionally my feet, my feet go hot and then damp but me having the raynauds feeling cold all the time i have to change my socks 3 times a day because the heat comes out my feet and sends my socks into a cold damp feeling. My hands being cold go clammy and the headaches can be terrible so i do understand on that one but i tell you what i do each morning if the weather is dry outside i make me a cuppa and sit in the fresh air and expose my legs to the air and i find it carms the heat down abit besides rubbing my knees as well plus take your feet out your shoes.
I've had all the ear trouble to go with it a bursted eardrum and i've got TMJ disease of the Jaw, you could always see an ENT specialist to check your jaw and x-ray it that's how they find out if you have it.
Please keep to the shade and always use a 50 block, as i over heat in the shade and within 10mins i'm usually back in doors having a break.
The nausea comes off the lupus, makes you feel sick, light headed and if your taking other meds besides the ones you've mentioned they may be causing it, always best to check.
Well i hope your headache is'nt to bad if it comes back because that can be painful and i've took painkillers and it never removes them, we have so much in common as i've suffered double vision and blurryness for years.

Do takecare mate Terri xxx

Peridot20_Gem
04-05-2011, 12:57 PM
Hi Maggie, and thanks. Well I guess it's worth a try plaquenil and cymbalta.
This goes out to everyone, I have not told my boss, don't know, I don't want him to think less of me. I work for a periodontist and we do lots of surgeries that are between
1to 3hrs. per pt. I love what I do, sometimes I feel so overwhelmed. But I am thinking of telling him when I return from vacation.
Has anyone felt the same??Bertie,

You have nothing to be a shamed of and if your boss is understanding you should be ok but other's will answer you better refering this who still work like yourself but refering myself i was finished from work years ago.