Mixed Connective Tissue Disease (MCTD)

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NoelJA
New Member


Date Joined May 2013
Total Posts : 2
   Posted 5/18/2013 5:35 PM (GMT -7)   
Hi everyone,
I'm totally new to this forum. I found it because I was surfing the internet trying to find some help with my MCTD diagnosis in Jan 2010. I have severe inflammation and pain in my fingers daily. I'm currently taking Cellcept (500MG 2x daily) and Hydroxychloroquine Sulfate (200MG once daily) but it doesn't appear to provide any relief for me. Does anyone have any experience with, or advice about either or both of the medications? How long might it take before it works (if it works for me)? Also, does anyone have any advice on how I can manage the pain? Thanks so much for anything that anyone have to offer.
 
Noel

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 5/18/2013 9:05 PM (GMT -7)   
Hello! I also take the two meds you mentioned. I have been on the Plaquenil for 11 years and Cellcept for almost 4 years. Originally, I was diagnosed with "some kind of" Connective Tissue Disease, but that has since been narrowed down to systemic lupus. The Plaquenil took about 6 months to help but the Cellcept made a huge difference almost immediately. I am so sorry you are still experiencing so much pain. You might want to discuss this with your doctor as the additional stress from pain causes your symptoms to worsen which, in turn, increases the pain. A vicious cycle. Are you seeing a good rheumatologist? Also, eye exams are extremely important while on plaquenil as bloodwork is while on Cellcept. Hope you find some relief, soon.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Vicodin, Prednisone.

NoelJA
New Member


Date Joined May 2013
Total Posts : 2
   Posted 5/30/2013 8:32 PM (GMT -7)   
Hi Fran,
Thanks so much for your response. I received my diagnosis in Jan 2010, but I have yet to get any medication that works. The Cellcept and Plaquenil has began to make me feel nauseous. Now, I'm stuck with Prednisone until I go back to see my rheumy. Tomorrow I'm going to see a naturopathic doctor. I'm praying that I can get something natural that will help me since I've failed most of the conventional medications. Previously, I had something from a different holistic practitioner and it really helped. The supplement had turmeric in it and it was outstanding!Unfortunately, I can only get it through the practice and the owner of the practice moved back to the mountains. Therefore, I'm starting all over with getting help. Every six months, I get bloodwork done and so far, I'm fine. I haven't had any eye exams. Thanks for that information and I will definitely get that taken care of. I agree that stress increases the pain. I've also noticed that if I don't get adequate amounts of sleep, my pain increases as well. I think that my rheumy is good but I've scheduled another appointment with a different doctor (traditional) just to get a second opinion. I'm really looking for to getting help tomorrow from the naturopathic practitioner and then I won't need to go anywhere else. Regardless of what happens, I will just keep working at it until something works for me. Again, thanks so much for responding. I don't feel so alone now  wink     
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