MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
I got off all steroids after 10 years on them. Now, the pain is back and gradually getting worse. I always had some even while on the steroids. The steroids and the Plaquenil combination worked the best along with Celebrex, but I cant take Celebrex every day and cant take the Plaquenil anymore. I had cardiomyopathy and cant take many of the other drugs for MCTD, so, here I am. I was always active, but now am struggling to get up and down out of a chair. All within about 6 months or so. It is all in my joints. I got some compounded cream for my feet and that is helping me walk. Some days I take a Celebrex and feel better the next day except for the swelling in my ankles and the nausea. Aleve and Ibuprofen are the same. Cant use cannabis as it is currently illegal here and nobody gives out narcotics anymore for chronic pain. I have avoided them for years and they also cause nausea in my case anyway. Tylenol helps some, but if I take it daily, it loses the ability to work.
Guess I need to go back to the rheumy as my next appointment is set for 6 months. I may need to go back on the steroids. I feel like I am between a rock and a hard place right now. Since the only thing constant is change, I am looking for that...a change for the better. Just an update.
Mary Ann
I have done a lot of research on pain control in connective tissue disorders b/c I was very worried that my opiates were being discontinued. This is actually not the case; I have tapered by nearly 30%, but my doctor and I both agree that withdrawing opiates completely is not a good choice. I hope to get down to a 40% reduction by late this year or early next; maybe someday I'll get to 50% or below.
The CDC guidelines-- as you probably know-- do not prohibit the use of opiates for chronic pain, and in fact, they provide grave warnings about discontinuing or denying opiates for chronic pain patients who need them. What's more, there is good evidence that opiates act like low-level DMARDs, and good peer-reviewed research that indicates they are a good weapon in the armamentarium for rheumatic diseases. Of course, this only helps if you find a doctor who understands the need for them and is willing to abide by what the CDC guidelines actually say, not by what is reported in the media, and if there is one you could tolerate maybe three or four times a week.
I wish you lived in a different state. CBD oil (with trace amounts of THC as a catalyst) is not a panacea; some days it works better than others. It definitely bought me an extra year or two of (limited, short-session) body boarding and skiing, and decreases my fall risk in the early morning when pain is worst and coordination is poor.
Another thing I discovered is that low-dose (<10mg per day) prednisone has fewer side effects than was thought previously-- the curve really drops off as dosage gets lower, apparently. This is an option I am considering a year (or two or three) down the road. If I were to reduce opiates to every other day, and use prednisone on the "off" days, along with my current dosage of CBD, I am hopeful I can maintain good mobility and quality of life for another 5 years or so.
I am at work now, but will try to PM you the links to relevant research later this weekend.
What I am most concerned about with you is decreased exercise and mobility and the long-term effects of the stress caused by chronic pain. Hang in there, try to keep moving as best you can, and sleep, sleep, sleep, meditate, meditate when needed.
Do not be afraid to advocate-- very firmly, but politely-- with your provider. Sending thoughts and prayers your way, more soon -- Katalyzt
I have avoided opiates for years when they were giving them out like water. When I have taken them for my broken hand or surgery, I usually can take one or two then the nausea sets in. I guess I may need a patch if it comes to that. I plan to talk to my family dr at my next appointment. He works well with me and is reasonable to deal with. I need to see the Rheumy earlier than the next appointment in 6-7 months. The family dr can get me in much sooner. I am concerned because now my ankles are swelling and I never had that before so something is going on.
I think I will need to go back on the low dose steroids. Maybe start out high and taper like I did when I first started on them.
I appreciate your support. It is nice to have a place I feel safe coming to and baring my soul. My spouse is very supportive but gets very down when I am having issues so talking to him just leaves him depressed and anxious and that does not help me very much. My kids are getting concerned because they can see the change in the last 6 months or so but I try not to worry them any more than I have to. Letting my hair down helps the stress of the situation. If only I could use it when ever I want and not when it will let me! Sheesh!
Mary Ann
Great that you are getting back in the pool-- even if it's not enough exercise, I'm sure it's better than nothing.
The other thing I use a lot for exhaustion and pain is music. I'll hear an old favorite, or a newer song that I missed the first time around, and download it, blast it when I'm having trouble getting moving. I also use it for my exercise routine, which keeps getting weirder as I get older, and have to avoid overworking the same muscle groups. 10 minutes with the dogs walking up a steep hill, 7 minutes on the rowing machine, 7 minutes in the pool.
Yeah, I don't want my wife, family, or friends to worry too much, either. But I do want them to know what's going on-- it's a harder balance to strike when symptoms are active, as they are for you, than when they are intermittent and sometimes in remission, as they are for me at the moment. (Though this summer is not as good as last summer, that's for sure.)
Last week was: "Dear Lover" by Social Distortion.
Today I rediscovered "Fascination" by Company B.
My favorite get-up-and-go music is generally punk or disco, but this would work for a lot of country, pop, and even classical.