Hidroxycloroquine is nothing effective in SS Primary patients

[Lou]

I found the other day this medical article that I think the content it is very interesting for us.

I hope you find utility.

http://jama.jamanetwork.com/article.aspx?articleid=1887760

[Kathy57]

I found this interesting but it is a small study and only for less than 6 months (24 weeks).  Plaquinil starts taking effect for some of us only after 6 months and for some of us - a year was even better.  For myself I would say that the Plaquinil really kicked in at 12 months.

It helped with pain and fatigue for me.  Not a cure by any means but much better.  I would hate to be without my Plaquinil but perhaps someday I will have to stop it.

My opinion, for what it is worth, is that this study is too small of a population, and didn't last long enough to truly evaluate the effects of Plaquinil.

Just saying.

Kathy

[irish]

I guess I would ask your doc for a stronger medication. I can't say that I have heard any difference in the treatment of primary or secondary Sjogrens. The thing is when you get some other autoimmune disease I doubt that things will be different.

The Plaquenil is not an immune suppressant. It is a very strong anti-inflammatory and is classified as an anti parasitic drug. It was and is given for malaria and years ago when the patients with rheumatoid arthritis took it for malaria they found that they had less swelling and felt better. It is also given for lupus also. It relieves pain and suffering, fatigue and other inflammatory issues and some people think that it helps increase some of their secret saliva. It is the first drug of choice for Sjogrens and usually is given with prednisone. The doc will wait a couple of months and then start to decrease the prednisone. If the symptoms increase it means that the plaquenil hasn't kicked in yet so the doc will increase the prednisone for several more months.

Everyone is different in the wait they respond. I have felt improvement in some of my symptoms in a couple of weeks but that is not the norm. Ask doc about Methotrexate, Imuran or Cellcept to start with. These drugs work better at knocking out the inflammation and getting rid of the flares. Some people do really, really well on these drugs. Good luck. irish

[cccourt1942]

Lou: Re: hydroxychloroquine or plaquenil-
       My diagnosing rheumatologist did NOT prescribe this drug for me.  After a few months (on this forum) I asked him about the drug.  He stated the same result from studies you shared (and a few more).  He stated there just was NOT substantial support for its efficacy.
        I moved from that area, and rheumy in this part of the world makes this drug choice for her SjS patients first off.  On this forum (where there are people sharing their results from all over the world and are all ages and stages) I learned of the "six month" rule for hydroxy/plaq.  Well...guess what?  The members here were much closer to accuracy than the physicians.  This is what we call anecdotal data:  the results are favorable enough to step out in faith.  Also, the med is not expensive.  That being said, If you take it, and you are as young as I suspect, you MUST stay in contact with your physician as there can be reactions if taken for long periods...to your body, to your eyes.  Check with your doctor or use search on this site. 
        For me, I have started my meds slowly and approached suspiciously.   There are supplements I have abandoned; so far I have not abandoned any drugs given to me by any of my doctors.  (so far)
        Good luck,
Sjoldier c3

[Jasper]

I feel Plaquenil decreased my joint pain, decreased musculo-skeletal pain and aching, increased saliva, decreased rash and skin problems, and caused overall improvement.

In addition, it is felt that Plaquenil slows down progression of the disease.

It takes several months to reach full effect.

I have read that study in the past and have found several problems/flaws in the study design. First, it was too short. Second, it was a small study. Third, the endpoints were limited. Fourth, the participants were heterogeneous and the study did not include the sickest patients. Fifth, it did not and could not give us any information on long term effects of Plaquenil on disease progression or reduced systemic activity and organ involvement.

These same study limitations have plagued the studies that have been done on Sjogren's Disease and various new medications. New studies need to have improved study designs, improved selection of study participants, adequate study time periods,  adequate study participants, and relevant end points.

[warmwaters]

There seems to be a range of results to Hydroxcloroquine. For some, it's about 6 months before people see a benefit.  Some never see a benefit. I've been on it twice, each time for over a year, and didn't get any pain or fatigue relief.

As others have mentioned, not a very well designed study.

My thoughts about plaquenil is that it's worth a try, as long as you understand the possible side effects (especially related to eyes), and you tolerate it well. Some people have stomach upset, and need to try different brands, or take it with meals to make it comfortable for themselves. And some can't tolerate it.