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...
Hello all, It has been a long while since I posted. I do look at your posts every few weeks. So after going to see my rheumy a few times since last year she doesn't think I need meds. I'm 42 and tested positive for ANA and RNP last year and have been managing this without them. I do take Advil sometimes. What do you guys think about no meds? My rheumy is a professor at a top university in Toronto and writes research papers on the subject so I trust she knows what she's doing. She said that meds have side effects and if I can manage without them then do it but if she sees things start happening then she will put me on them. My C3 complement was low a few months ago but is fine now and was a bit anemic but that's fine now as well. I use to have blood work every 3 months, now it is 6 months. My biggest complaint is still my throat, it hurts it burns and I have an appointment to see a Specialist in mid July, believe it or not been waiting since last year to see her. I am tired a lot, and I saw some posts regarding work. I decided to get a note from the Doctor that says that I require accomodation to work from home, I have a job that can be done from home and was already working from home 2 days per week. I did lose my office at work, I loved having it because I use to take naps on the floor but it's fine because I only go in when I'm feeling I can, usually once a week. If I don't work full days M-F I do a little on the weekend, I think work flexibility is good for this illness. I also sleep a lot! My 6 year old and I go to bed at the same time, 8:30ish and wake up 6:30am. I don't do as much as I did before because I'm simply tired some days. Thank you all.
Beth
It does not seem like the "Disease Modifying Anti Rheumatic" or DMARD drugs do very much. The best of the lot is Plaquenil, some people here have had a good experience with it, but usually they can't tell if it's working or not, and if it does work, sometimes people can only take it for a few years without having side effects.
I find that CBD oil, Norco and prednisone are the only drugs I've taken that made a difference. My lifetime does of prednisone is pretty high, so I'm not taking it again unless I have an emergency.
The CBD oil is very expensive and it's not easy to find a good preparation which will do the job & balance it with the right amount of THC without intrusive psychoactive side effects. I think opiates are also great for this illness, but only if you are not prone to addiction... I was lucky to be put on them so long ago, I am kind of grandfathered in. It's weird, I couldn't stop drinking for a single day for 45 years or whatever and had to join AA, but I had no problem decreasing Norco from 7 or 8 times a week to 5 or 6. Go figure.
I think it's fantastic how you've worked with your employer to have flexible hours! The main thing if you work in an office, I think, is documenting that you are meeting all your deadlines and getting your work done. Every email that says "great job!" should be forwarded to your personal email addresses or copied to a USB drive or printed and saved. I say this because even the greatest companies sometimes get restructured, and then some idiot will start firing people they think are vulnerable. But at one of my office jobs, I was able to stall them for firing me for two years, which gave me time to develop other options.
Also great that you are taking sleep cues from your kid! I do the same thing with my dogs, though I can't fall asleep or wake up nearly as fast.
One of my dogs is older and has some arthritis. Generally, we both have flares at the same time. His start and end about a day earlier then mine.
I can't tell you how many times I have been stretching and turned around to see him doing exactly the same thing.
It’s not possible for me. :(
I’m hoping for a year of tough meds then tapering off to see if my wacko immune system can function on its own.
Good luck!
I will keep you posted with what the Specialist says on July 10th regarding my throat. I honestly feel like there is a growth in there. They did an ultrasound last year and nothing showed up, I think that's why I've been waiting this long to see the Specialist. My throat feels tight and dry today. It's a good day in general, I do feel like taking a nap although I slept 10 hours last night and it is only 5 pm here. Just finished working.
Katalyzt, I have been thinking about cannabis legalization in Canada, they have finally set a date, October 17th and I will be able to purchase CBD oil from the government run cannabis stores.
Thank you all again!