Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Update on treatment for Sjogren's

Discussion in 'General Treatment' started by Cynthia Robins, Jun 9, 2013.

  1. About two months ago I posted that a rheumatologist in Philadelphia thought I had Sjogren's - extreme fatigue, dry mouth, scratchy eyes, etc. I also noted that the bloodwork was a little weird - high C3 and C4 levels, but everything else - including antibodies for Sjogren's - turned up normal. Since no one else had come up with anything, I went ahead and started the treatment regimen she suggested: generic Plaquenil BID; 3000 IU Vitamin D; B12 supplement; B complex supplement; and at least 3500 mg of fish oil daily. After getting some feedback from the above-noted post, I added 50 mcg of selenium; maintained my once daily baby aspirin; and, for energy, kicked in calcium pyruvate and folinic acid. Whew! Lots of pills to be chugging down each day!

    The good news, though, is that I think there are signs of improvement....they're moderate, but they are measurable. For example, about this time last year I could get out on my bike for about an 8 mile ride and would be down for the next two days. Steadily, over the last year, I've extended my distance, but never more than 13 miles on my own - there's a 16 mile loop that I've tried to do and each time I've ended up in terrible shape and unable to do anything at all for several days afterwards. Well, last weekend I did the 16-mile loop in the heat on Saturday and felt only mildly awful; rode the same loop on Sunday and kept the same pace and didn't seem any worse for wear. Rode a couple of times this week and yesterday tried a 21-mile loop - made it through without even thinking about calling home for a sag wagon! My pace also continues to increase - last year, I was doing well at 13.5 mph. Am averaging around 15.5 now on a regular basis. When I was racing, 17.5 mph was my "fighting pace," but given how things have been the last few years, I'm ecstatic!

    I'm trying to temper both my excitment and my exercise, for fear I'll backslide and never find anything else that even sort of works. But things seem to be improving, slowly and steadily. :thumbsup:
     
    Hanna and *GG* like this.
  2. Pavel Karnaukhov

    Pavel Karnaukhov

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    Hi Cynthia, how are you feeling now?
     
  3. catly

    catly Senior Member

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    outside of NYC
    @Cynthia Robins
    I'm also interested to hear how you are doing if you're still on this forum.
     

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