Lupus & Plaquenil/Pain

I was diagnosed with lupus in about '85, they said at that time I had probably had the condition for a while before it was found because I was on steroids for copd. The Rheumatologists I saw were of the opinion that since I was already on steroids I just needed monitoring not any other meds. I was recently referred to a Rheumatologist by the Dr. overseeing my blood disorders. She now wants me to start on Plaquenil, I am quite concerned because my eyes seemed to be the only system that still work fairly well. I asked her if the Plaquenil would help with the pain but she indicated it probably wouldn't. I used Darvocet for years with no side effects and was able to get out & live a semi-normal life. Since it is now off the market I find I am just trying to tuff out the pain & it really gets tough to cope.Vicodin is not a good drug for me & my blood disorder limits anything else, they do allow naprosyn but in limited dosing. opinions welcome



SLE, COPD Lupus Antibody Blood disorder

Plaquenil does help with some of the symptoms of Lupus, but it does take a few weeks to start helping. It's most important role is to inhibit progression of the disease -- I'm really surprised you haven't been on it ever since the Lupus was diagnosed.

Eye issues from Plaquenil are quite rare, and most guidelines are to have a ophthalmologist perform screening every year. I've been taking Plaquenil 10 years now, without any issues.

You might want to see a pain specialist if that is your biggest issue -- they are always coming up with new methods of pain management and the specialists are the ones who know about all the latest research.

Best wishes,

Thanks, I also have some issues with my eyes (laser treatment for narrow angle glaucoma) and would hate to lose any of my site or color. I also read that it can make you color blind. I plan to see my eye Dr. before I start the new med. and get her advice. They are watching for growing cataracts already & I see her every 6 months. I was on long term levaquin about 1 1/2 years ago and seem to be having tendon pain in right leg, which adds another dimension to my woes.


"Always remember this is NOT the worst thing that has ever happened to you" Radar O'Riley

I take 200mg Plaq per day and it nips all my pain in the bud. however, some side effects of Lupus I have are: Lupus Fog, smelling non existent odors (acrid smells), occasional dizziness. Other than these, my life is fairly normal. The Fog aspect is really frustrating as it can cause embarrassment seeing people I have recently met and talked to for hours and having no memory of these conversations and not oftentimes not remembering having met them. Only slight familiarity of their face MAYBE!!! Funny thing is my numbers side of the brain is totally intact and I can remember a long chain of numbers if read to me and asked for days later. The brain works in mysterious ways

I got started on plaquenil straight away its a malaria tablet helps control our lupus and helps with the rashes the erythematosus part causing the redness it seems to help the rashes keep at bay alot more than it does the pain i dont no alot have only been diagnosed since last year july but was started on it from the day i can the prednisolone and plaquenil combined has helped to pain to a minimum able to cope in some way

Scarlett

So interesting that you posted about this because I have a lupus antibody blood disorder.  I had blood clots go to my lungs in 2009, then again in November & December 2012.  Finally saw a hematologist and was diagnosed with Antiphospholipid Syndrome and + lupus anticoagulant.  I have Crohn's, and he thinks this is the reason for these, not that I have lupus (though sometimes I wonder...have a lot of joint pain lately...but for now I'm on Humira)

Anyway, the APS (antiphospholipid syndrome) can be treated with Plaquenel so I was reading here for information about the side effects.  The hematologist said there weren't many side effects, but I figured you all could tell me better than a doctor what the side effects are like.

So far I've seen that some of you had a foggy feeling, but more energy.  Does the fog wear off the longer you're on the med, or do you experience this for as long as you're on it?  I will be on it for 3-4 months in addition to warfarin then recheck bloodwork and see if I need it for longer, or if it took care of the APS and I can go off Plaquenel and warfarin...

It's my decision to make whether or not to try the Plaquenel, or when I want to, so I was so glad to find a thread that had info that answered some of my questions.

BTW, did you have blood clots, or find out about the blood disorder when testing for Lupus?

Hugs to all of you!  Thanks for all the info you provided already!

Hi there just wanted to let you know that Lynnwood is correct the plauqnil does not cause our fog issues. They come from our lupus, for some lupus patients the fog can be terrible.

I like Lynn have been on plauqnil since June 2001, there are some concerns about me having reached toxicity levels with the drug. I'll be getting a special field vision test made especially for plauqnil on the 3rd I think.

If you start to have any eye issues don't let them slide. If it is causing an issue, once they take you off of the drug you should get better. Plauqnil is considered the safest drug that they start with first. It can take up to 6 months for you to get the full benefits from it. Some people have issues with stomach issues but that normally gets better.

I like you have APS and the lupus anticoagulant disorders as well. I will be on Coumadin for the rest of my life. I had my first blood clot in my inferior vena cava. Then 2 years ago they found I had (still do) a huge blood clot in my superior vena cava. I'm lucky that the Coumadin clinic I go to was able to arrange for me to do my own INR testing here at home. Alere Home Mointoring is the company that provides my testing equipment and supplies. I do my test, call the results in, they fax my results to the clinic, then the clinic calls me with any adjustments that are needed.

Feel free to ask as many questions, or come and vent, here we all understand what it's like to have lupus and other things as well. Welcome to the group.

Hugs,
Barbara

P.S. I WISH I could self test, but I have Kaiser and they don't offer at home coumadin testing unless you're homebound and require home health nursing (which I used after the most recent clots in lungs)

I have the antiphosphoid syndrome to. My levels were off the charts. I have not had any blood clots issues, so I am on 81mg asa instead of a blood thinner. I have been retested and my levels are still extremely high.