Sunday, June 30, 2013

Study Raises Questions about Sjogren's and Plaquenil


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For many patients with Sjogren's, Plaquenil (hydroxychloroquine) has long been the go to drug that their doctors prescribe.  It is often the first line of attack before other more aggressive therapies are added such as methotrexate or rituximab that have bigger impacts on the immune system.

The other day one of my favorite bloggers, Julia from Reasonably Well, wrote about how she's been feeling since discontinuing her Plaquenil. 

I can tell that my meds have changed. I had almost (but not quite) forgotten what these aches and pains feel like, but they're back…I am re-acquainting myself with those symptoms that it tames: the overall flu-like and feverish feeling -- aka malaise -- and joint pain." (Click here to read more).

I had a similar experience when I stopped taking plaquenil.  It was one of those situations where I didn't realize the medication was having such an impact until I stopped it.  My joint and muscle pain went up and my energy levels went down.  Did the drug eradicate my fatigue and pain?  No, but it did alleviate some of the symptoms and improve my quality of life.  I have been on enough drugs to know when one helps.

So I was very interested when I saw on Twitter this study presented at both the American College of Rheumatology (ACR) and the European League Against Rheumatism's (EULAR) annual meetings:  Inefficacy of Hydroxychloroquine in Primary Sjogren's Syndrome: Results of the Joquer Randomized Placebo-Controlled Trial in Primary Sjogren's Syndrome.  Yes, that's a mouthful, but for those of us with Sjogren's and on plaquenil, it's a subject that's pretty relevant.

I haven't yet been able to find a published article with the study findings, but I was able to access the abstract.  The key findings cited:  At six months, 19.2% of patients receiving placebo and 19.6% of patients treated with HQ had a favorable response….No significant difference was observed in the evolution of systemic disease activity, dryness symptoms and quality of life. (Click here and go to L9 to read the abstract).

To summarize, the study found that at six months hydroxychlorquine (plaquenil) had no impact on a range of Sjogren's symptoms nor on disease progression.  While previous studies of the drug's effectiveness have been mixed, this study is considered important because it was placebo controlled, done with a larger population (still only 120 patients), and occurred over a 6 month period.  

So what does this mean for those of us who are having some success with plaquenil?  I'm really not sure. To start with, until the results are fully published it is hard to know what the complete findings were. For instance, I have since found other references (like this from the Journal of Musculosketal Medicine) which indicate that the complete results are less clear than the abstract--that patients who took the drug for one year did have significant improvements. I'm assuming full publication will help clarify some of these points. 

I am always very excited to hear about new Sjogren's studies, but given the limited information available I was a bit concerned to see some of the early reaction online. I have already seen a few doctors--on Twitter and in podcasts -- making reference to the same findings I have seen, with some indicating it may cause them to revise their treatments for Sjoggies. 

This gave me pause. I'm just one patient, but I would urge caution to anyone currently treating patients with the drug. I have first hand knowledge of the benefits of the drug and know from several other Sjogren's patients have seen them as well; in short the drug has helped at least some of us. Since there are so few treatments available, it seems important to have plaquenil as an option for others seeking relief for their symptoms until other treatments are available.  Taking one arrow out of an already thin quiver doesn't seem like progress.

While watching my doctors at work, I've observed that part of treating patients with autoimmune disease involves trial and error. I don't view this as an argument against evidence based medicine but rather an indication of the importance of clinical judgement when treating patients with the same disease diagnosis but divergent symptoms and disease trajectory. I don't see how 60 patients (number of study patients given plaquenil) can encompass all the variant manifestations of the disease. 

I hope doctors and scientists use this research as a motivation to do further studies on Sjogren's, as opposed to considering the issue of plaquenil settled. We just know so little about this whole disease that I hope each piece of knowledge we gain is seen for what it is--a little bit of a puzzle revealed, but one that will take years and many studies to become clear.  Hopefully, one day in the not to distance future, newer, more effective treatments will make this whole thread irrelevant. 

Have you taken plaquenil and what was your experience?  

45 comments:

  1. My doctor has had me cut back to taking plaquenil every other day. Haven't really noticed a difference. I have aches but nothing the odd motrin doesn't help. I do have vasculitis in my lower legs on occasion so it will be interesting to see if that happens more frequently.

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  2. I noticed an incredible difference, when I had to go off my Plaquenil for a test, within the first week of doing so. I couldn't wait to go back on it.

    My concern with this study is that I have heard from doctors, my own as well as others, who caution that sometimes Plaquenil can take at least 6 months to fully kick in. So if they did this study at the 6 month point than I am not completely sold on the idea that these patients have been on the medicine long enough to fully tell if it is benefiting them or not. I wonder if they took that into consideration.

    I feel like in the long run, as there are no one hundred percent medicines that work for everyone with Sjogren's that most doctors will continue, hopefully, to use Plaquenil as one of their many "go-tos" to try out.

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    1. I had a very similar experience to you when I went off plaquenil. It was a relief to be back on the medicine. I completely agree with your concern about the study. It could be that the end of the study needs to be 12 months and not 6 months in order to really assess the accuracy of the drug. And I'm hoping like you doctors will keep using plaquenil as one of their possible treatment options. Will keep you posted if more info comes out.

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  3. Have never been on plaquenil, only on methotrexate since first diagnosed. Started out with 2 now up to 4. Also take 2 folic acid daily. There was a medical reason could not take plaquenil, but can't remember maybe because I have Dry MD?

    Sometimes I don't know how I feel. I do know I wish everybody with disease a very gentle day!

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  4. When first diagnosed I was told to tapper up with the brand name Plaquenil. (He had found that the generics were harder on his patients stomachs)
    I found significant relief within weeks. Stiffness was greatly reduced. Swelling and pain were on the decline. After 3 months my Rheumy said it was ok to use the generic.
    I was fine for a while on the generic but my new rheumy bumped me up to 200 mg twice a day. Generics are only required to have 75 percent of the drug so I needed the extra bump.
    The first generic was fine- it did make me a little queasy but the cost savings was too great not to take it.
    Then the pharmacy switched vendors. Horrible results with finding a decent generic. They either tore up my stomach or had so much coating that it passed through my body without dissolving. It was as if I wasn't taking the drug at all- I was in great pain.
    So I am back on the name brand again. After being on and off it I can honestly say that it really helps.

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    1. Amy, I had the same experience with the generic. After taking the name brand for several years, my insurance offered me a much better co-pay if I switched to generics. Within 30 days of starting the generics, I felt like I had previously felt before starting the name brand Plaquenil. My rheumatologist quickly returned me to the name brand and remarked that she had several other Sjogren's patients who found the generic did not work for them either. I'm now on Medicare and my Part D does not cover the name brand, so I have been buying the name brand from a reputable Canadian pharmacy for the past 3 years.

      BeckyJo

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    2. BeckyJo - I am currently on the generic and am experiencing side effects. I want to go onto the name brand but my insurance keeps denying my docs pre-authorization. I cannot afford to self-pay at my local pharmacy so I've been researching online Canadian ones. Would you mind sharing the one you've been using? Or, how you found a reputable one to use? Thanks! Tracy

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    3. I know this is a little late, but it may help someone else who is searching for a reliable Canadian pharmacy. The pharmacy I buy from is NorthWestPharmacy.com. Please note that due to all the US government/FDA interference in our bringing in drugs from overseas, NW Pharmacy is requiring either a check or INTERNATIONAL money order as the credit card companies have been scared off by the US government. I just scan my personal check and email it to them. I've been doing that for several orders and no problems-just received some medication this week!

      BeckyJo

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    4. Wow that is amazing. Does your Dr. write you a prescription and you send it or do they fax it? I have only been on the generic Plaquenil for 7 months and am starting to see some benefits but the Methotrexate injection 25 mg weekly really helped more than I realized. I have had ringing in the ears since going off the injections. I am hoping the Plaquenil will help that too. Paula

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    5. I too can only take brand name. Generic is not strong enough.

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    6. I am going to see my Rhuemy tomorrow and I am very glad that I saw and read this blog before I go. I am so sick of meds but I need them. Generic plaquenil does not work for me. Rips my stomach apart and leaves me with no apetite. My pharm keeps changing manufacturers and it seems like every different one has a new side effect. Before taking plaquenil I was taking Quinicrine which is a compound for 11 years. No real problems except they stopped making it and I had to switch. Anyway, thank you for all your feedback. Peace and love to you all

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  5. I'm @rickit on Twitter and found you through #HAchat! What a cool way to make connections with other bloggers and advocates. I'm always glad to meet people who share their journeys so openly. I look forward to reading more of your posts!

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  6. When I was on plaquenil I did not have Sjogrens and did not notice any change in my RA with it. As the Sjogren's gets worse I may ask the doctor to add it in. Then again, maybe he won't agree.
    You're right though, there's not much in the quiver

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  7. I take the generic form and after almost 5 months, I find it's finally helping. My body feels less knotted and wadded up. However,I'm now experiencing a severe itch reaction to water and prelim research shows it could be a side effect. ugh. #AquagenicPruritis

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  8. diagnosed with primary SS in 2006 and have never gone on plaquenil as I have latis degeneration of the retinas and plaquenil can seriously effect the retinas - in the last year had a TIA where I lost partial vision in one eye for 60 seconds, and not have pericarditis - my rheumy is pushing hard for plaquenil now, but of course wants my retinal ophthalmologist to sign off first. My primary SS does not stop my day to day life - have some arthritis in both knees and get those "flu-like" symptoms maybe once or twice a year (just for a day and 3 advil with rest does the trick) - have also had carotidynia flare-ups about 3-4 during 2011-2013 - still I think there has to be a better way to treat SS without risking someone's eyesight - retina's detaching are a serious thing - or losing one's sight. I would like to hear back from other's on plaquenil and their thoughts - I would rather live on coldcrys to control the pericarditis and utilize aspirin/advil, then a drug that may risk my sight

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    1. just diagnosed and was put on 300 mg of plaquenil (generic) a day....well 3 months later I am having to have a corneal implanted contact lens to help keep the moisture in the eye as I am loosing my sight. The optho and rhummy do not believe it is the drug, but nothing else in my body has changed. The placquenil was helping my joints and overall fatigue but now I do not know if my vision will be correctable...I was told to get off the drug until they figure it out. I hope this wasn't the worst mistake of my life.

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  9. I have been on generic plaquenil for over 11 years. When you are on this so long you begin to think it's not working, and not worth the risk of taking it for so long. I went off it a few times over the years. Four years ago I had been off the med for about 6 months and went through a bad personal trauma, resulted in my platelets dropping down to under 2000. Was in hospital until the procedures to help make my spleen behave began working. One of my Dr's blamed it on going off my med, the generic plaquenil. Now, with the risk of bleeding disorder returning, I cannot take any OTC pain meds. (I do resort to them on the rare occasion) So, here I am, on only one 200mg pill daily, for the rest of my life : ) My main philosophy is to live as stress free as possible now. I have had my eyes checked continually over this period of time and have had no problems with that, thankfully.

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  10. I quit Plaquenil due to my young age and the drug's long-term possible side effects regarding vision. To me, my sight is worth more than my alleviation of pain. I have found the oddity that when I am pregnant (currently in my 5th pregnancy, second since diagnosis), I am 100% pain free! Incredible. My rheumatologist accredits that to the effect of estrogen on the body. I don't know what it is, but at about 3 mos post-partum, my hands become nearly crippled. Right now, 12 weeks pregnant, my hands are as painless and flexible as a five-year-olds! I don't understand it, but I am certain that Plaquenil is not the solution to our issues. Be it stress-reduction, healthy-eating, lifestyle changes, FAITH (which is undoubtedly lifted during my pregnancies)...I don't know, but I am determined to live without drugs and thrive. Thank you for sharing the study.

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    1. I was pre-menopausal and starting to notice the dryness was worsening. I never could get the Dr. to agree that hormones had anything to do with Sjogren's. I think it does. Your Faith and a positive approach will carry you through. Paula

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  11. During pregnancy, natural levels off the hormone cortisol are higher - resulting in alleviation of some symptoms of inflammatory and autoimmune diseases. I had 3 such diseases (ulcerative colitis, asthma and SS) and was able to cut down on medications during pregnancy as expected. They did flare up about 3 months after pregnancy. I did breastfeed for 5.5 years so apparently this doesn't raise cortisol levels.

    I can't take plaquenil because it gives me psoriasis. But when I did take it, I got an immediate result which was not expected - more saliva. I had heard from listserves that it could take up to 11 months to work, and that the effect was subtle, subtle enough that many people don't notice it until the STOP taking the drug. This has proven to be the case over and over with people in my local Sjogren's group. Also, apparently the brand drug almost always works better and has fewer side effects than the generics. But the most important information that has come out in the past 10 years about plaquenil is that the incidence of retinal problems is dose-related. This means that the dose you take must be based on your weight. Most docs now prescribe it at 400 mg/day to start, then once you get the effect, you lower your daily dose to reflect your size. For most petite women, this means 200 mg per day. But many people continue to feel the effect on the lower dose. A lot of this has just been figured out in the last 10 years. Regular eye exams and taking the appropriate dose both make it very unlikely that you will damage your eyes by taking plaquenil.

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  12. Lots of pressure from immunologist to start plaquenil but that ain't going to happen. I watched my mother go blind from macula degeneration which she did with immense grace and great courage but believe me it was heart breaking to watch. My grandmother was blind well before I was born. My father had glaucoma. I am already getting complete white outs on sunny days and have a regular 6 monthly appointment with the opthalmologist at his request. Even though I told all this to the immunologist he still didn't get that I wasn't prepared to take the risk or prepared even to live with possibility of going blind any sooner than I need to. What's not to get? I no longer have an immunologist.

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  13. My doctor has prescribed Plaquenil and I have filled it--but I can't bring myself to try it yet due to the side effects some people experience. Has anyone here experienced having brown patches appear on your face? What I am reading here encourages me to give it a try, and since there aren't many arrows in the quiver, I may need to give it a shot! (female, 58, diagnosed Sjogrens, taking Evoxac with some success)

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    1. I have stopped taking Plaquenil after 6-weeks because I have anxiety attacks and mood changes as well as lost appetite and weight loss...currently taking Xanax and cannot stand taking this med until I see a psychiatrist - has anyone experienced these side affects from taking Plaquenil so-what was prescribed for the anxiety since I don't want to be on meds that will cause dry mouth which will not help with my SS...this is secondary since I also have Scleroderma (CREST). believe with so many people suffering from Autoimmune condition-there is no cure or natural medicine or supplements will help with these conditions that is affecting many people

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    2. yes Plaquenil did give me mood swings and then they wanted me to see a pychiatrist but when i stopped taking the plaquenil my anxieties and depression went away.

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    3. I have two small brown patches on my face and all over my body. Since they aren't large, my old rheumatologist told me that it wasn't caused by Plaquenil. I don't believe him. I also developed scaling skin and became very weak. I took Plaquenil for over three years and quit last week. So far, I actually feel less tired and lighter, like I'm not dragging around sandbags.

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    4. Does anyone take supplements instead of taking Plaquenil and does it help with the SS symptoms?

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  14. I Take fish oil, vitamin B6, Magnesium, vitamin D, and a very good mutli-vitamin called Ambrotose. I get a eye exam today to see if I have dry eyes.. to determine the diagnosis of Sjogrens. I have been managing the joint pain and aches with tylenol or NSAIDs. The brain fog and aches are my only real issue. All meds have side effects. My Dr. discussed plaquenil but Im so reluctant. I will continue to pray and see how it goes.

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  15. I have been on generic plaquenil for probably 3 years now. I think it gave me an upset stomach (mild) the first few times I took it if I took it on an empty stomache. Other than that- absolutely no side effects. I think it is worth a try. People can always stop if their body reacts poorly. To me it seems to be a very mild treatment and not as hard on my body as steroids. The opthamologist follows anyone on plaquenil and believe me are very thorough. Any problems with the eyes develop with the use of the drug over many, many years and with the higher doses. It did take about a year for the meds to start working but it has helped my joint pain and brain fog. Not so much my limited energy. Good luck!

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  16. I was diagnosed with Sjogren's about five years ago. I had extremely dry eyes that were not improving with any of the meds the eye doctor prescribed for me. I was also incredibly thirsty and very achey. The rhuematoid doctor put me on Plaquinil and it helped all of these symptoms tremendously. In February, rather than make another appt. with my doctor, I let my prescription run out. Boy was that a huge mistake. I see my doctor this Thursday and can't wait to get back on the Plaquinel. BTY--I took the generic version and had no problems at all. . In addition to all of my original symptoms returning, I am now battling terrible fatigue. At times, I am unable to lift my arm above my head. This is the first time I have posted anything at all on a website. Just had to share my experience with Plaquinil.

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  17. I was on the generic version and it gave me mood swings, anxiety and weird feelings of not focusing and nervous all the time. This was only after a week or two, so I stopped and told my internist that I could not take medicine. He wanted me to try it every other day with 100 mgs and the same thing happened. This drug is definitely not for me. I manage primary Sjogrens with vitamins and liquid omega-3, along with OTC advil and aspirin. I have acute dry eyes and salivary glands (had lymphoma in 2002); glad to be off of the generic plaqunil for my eyes sake. No interest in trying the brand name.

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  18. Anyone know if Plaquenil causes skin aging? That's what's happened to me , I've been taking brand for about year with excellent skin now my skin has really aged! Horrible drs have even commented. I have CREST Syndrome and was also on methotrexate but only less than month...hard to believe it could have caused this? Anyone have this happen with either drug? Thanks!!

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  19. Anyone know if Plaquenil causes skin aging? That's what's happened to me , I've been taking brand for about year with excellent skin now my skin has really aged! Horrible drs have even commented. I have CREST Syndrome and was also on methotrexate but only less than month...hard to believe it could have caused this? Anyone have this happen with either drug? Thanks!!

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    1. I'm not sure how old you are, but I would suggest that you see a dermatologist and let them know you are on Plaquenil. They should be able to recommend/perhaps even prescribe some kind of lotion or cream that helps your skin to hold moisture. Some people also take Vitamin E & Omega 3 to deal with the dryness.

      BeckyJo

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  20. Just diagnosed with SS and Raynauds and am trying a natural aproach of elimination diet and supplements.
    Has anyone had success with this direction?

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  21. I've been on plaquenil since 2011 and have had great success with it. It gave me my life back. I used to sleep 13-18 hours during flares and was always sick. I can function normally now, and flares aren't as severe. For the past year now though, I'm experiencing rashes that look like lupus rashes. A biopsy indicates possibly drug induced, and it's assumed it's the plaquenil. I dread having to go off. It's been a miracle drug for me.

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  23. New to sygrogrens..had aches in legs and hands..on generic plaquenil for two wks..have lots of fatigue but am sleeping better
    .very dry eyes,loosing eye,lashes,some stomach issues but playing with pill to see when is best to take.My diet and supplement level has been very good for almost 20 yrs. HAVE GLUTEN AND LACTOSE ALLERGY...not sensitivity so eating is a pain.dint know what to even tell rheumy have appt coming up in couple wks..any thought would be great

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  24. Anyone taking plaquenil have fluid retention. I was on it for about 5 weeks. Initially I felt wonderful after about 1 week but the swelling in my hands especially was almost as bad as the aches and fatigue. Have been off it for about 1 week now and fluid retention is going down but the pains are back.

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  25. Any damage or unsettling influence to the delicate tear film of the eye causes a condition called “Sjogren’s Syndrome. There are some of Sjogren’s Syndrome Natural Remedies are mention below for the natural treatment of Sjogren’s Syndrome that are Eye Hygiene, Cucumber, Castor Oil, Cold Milk or Rose Water, Aloe Vera, Warm Water.

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  26. What is your elimination diet and what supplements do you take? Just curious. Did you find research that helped in your decisions? I have had Shogrens and Raynaids for 35 years...

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  27. Hi recent bad health, awaiting diagnosis but clssic sjogrens,very dry eyes constantly, almost no saliva,can't taste or smell anything,getting clumsy and skin full of marks and red patches, Reynaud's symptoms and lots of cramp and pins and needles in feet and hands. Also bloating and bladder problems.all in six months. Am really frightened and wondering if anyone else experienced such a rapid decline,if so, what has helped and is there any remission? I'm struggling with a lot of joint pain and am very scared with so many things changing so fast.thanks for any feedback

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  30. I have been on plaquenil for almost 3 years now and it gave me back my life! I was diagnosed with UCTD at first but rheumy is starting to believe that it's primary sjogrens. My joint pain is under control and mild at times. The fatigue almost gone! However rheumy says plaquenil does not target the specific symptoms of dry eyes and dry mouth. She is right. I treat my dry eyes with restasis drops and the dry mouth comes and goes. I do notice that when my disease activity is low my eyes are naturally not as dry. So I consider it an Indirect effect of the plaquenil. Hope this helps! Wishing my fellow SS's flare free days!!

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  31. Sjogren's Syndrome Herbal Treatment may improve various symptoms. Dryness in the eyes and mouth are symptoms of Sjogren’s Syndrome.

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