Wednesday, August 6, 2014

Part Two: Managing Sjogren's Fatigue by Sarah Schafer, MD

Here is the second in Dr. Schafer's series. The third and final section will be posted on Monday, August 11th. 
Medications and Sjogren’s Fatigue
By Sarah Schafer, MD
I recently reviewed the literature that covered medications and fatigue. First, for perspective:
  • There are not many studies that include fatigue in evaluation of treatments for Sjogren’s. Other than the study showing high prevalence of disabling fatigue (70 %) in primary Sjogren’s, there were no studies that focused solely on Sjogren’s fatigue. That is rather alarming, if you think about the impact fatigue has on our Quality of Life.
  • There are huge limitations with the studies that did look at meds and fatigue. None of them had fatigue as their primary focus, but fatigue was included as one of many parameters being studied. 
  • Most of the studies were small. None were long term. Since our disease is very long term, with fatigue varying over long periods of time, this is a huge problem in study design.
  • None of the studies looked at methotrexate or prednisone.  Only two studies looked at hydroxychloroquine (Plaquenil), and are inadequate to draw conclusions.
  • Addendum:  Published in JAMA July 16, 2014:  A new large study in France looked at 120 patients with primary Sjogren’s taking Plaquenil and drew the conclusion that there was no improvement in fatigue, pain or dryness at 24 weeks. There was no note of the effect of stopping HCQ, and perceptions of fatigue. It is frustrating to read this study, because it was the largest study to date. The first problem is that 24 weeks is not adequate for this very long acting drug to take effect. The second problem is that most people experience such subtle change over a long period of time that only by stopping the drug do they realize that it was helping fatigue.   It does reinforce that this drug has limitations, including no “bells and whistles” improvements for most patients. 
  • Some of the studies, while small, looked at the newer biologics. Most look like duds, although it is hard to draw conclusions on small numbers. However, rituximab (Rituxan) did show some promise.  Of course there are pretty serious side effects with this medication.

Here's my takeaway regarding the use of medications in the treatment of Sjogren's fatigue:   
(NOTE:  These are my opinions only. Do not substitute this for your own judgment or your doctor’s advice.)
  1. If you are OK to take plaquenil (HCQ), decide for yourself if plaquenil helps. Studies are inadequate, but many find it somewhat helpful.
  2. Use prednisone if you have to -- I have had complications that required it -- but if you can, try to keep it to short courses for flares. You can get off short term prednisone much easier than long term. Another consideration is low dose prednisone, which has few side effects but may alleviate fatigue caused by total body inflammation (3- 5 mg).
  3. Consider methotrexate (MTX): I know many people who are helped by it, myself included. While an abundance of positive stories do not make a good study, there are no studies for MTX use in Sjogren’s. We are simply borrowing tools from other diseases. Use injectable (it’s easy!) for fewer side effects and more reliable absorption. And don’t forget to take folic acid supplements; your doc should know about this.
  4. Stimulants are worth considering. Their use may require a trial and error period. Some people find Provigil or Nuvigil helpful, but they are fairly long acting, which can make it difficult to rest during the day. However, I would try other things first. Have all of your other fatigue causes been addressed? Often not. For example, if you have dysautonomia related fatigue, that needs to be treated. It is often overlooked, so think about getting tested for this, especially if you feel lightheaded or dizzy if you stand still for more than 5 or 10 minutes. I had undiagnosed, untreated POTS for years. I use very small doses of Ritalin to treat my POTS  which has the added advantage of stimulant effect. I only take 2.5 mg twice a day -- more than 5 mg makes me jittery. It is short acting, so I can rest in the afternoon after my morning dose has worn off.
Finally, have you really considered changing lifestyle to be more kind to yourself?  If you are super fatigued, you probably need extra rest, less work, diet and exercise changes (future discussion) versus going  into overdrive with meds.


Jen Vandever said...

First, thank you! Second, a comment about Plaquenil - I agree about not quite knowing what it's doing until you've stopped taking it. I took it for four years and thought it was not helping at all, stopped taking it, and after being off of it for 18 months, realized what it had done to help. I got back on it four years ago and it has helped again. I still have flares, but they are not as bad as when I was off of Plaquenil, and until this last winter were manageable with low dose prednisone.

Unknown said...

I have had Sjogren's (primary, I think) with lung involvement, psoriasis (hands and feet for 20 years) and now idiopathic eosinophilia. I tried Plaquenil for overwhelming fatique and it made my psoriasis so bad within two weeks, that I stopped immediately. Some rheumatologists say there is no link, but beware.