MCTD Support Group

Hi
I have UCTD and when it was real bad put on steriods along with plaquenil. It took about 2 months for me to finally start to function again. It lasted awhile before it happend again and I was put on methotrexate. In a few months again feeling better and functioning. Its been a couple of years now and I am doing fine. Still get symptoms and treat them as they come. I have learned that stress along with not getting enough rest can bring on an episode. I believe you are on your way up now and enjoy it. Don't be afraid. Get your rest and try to keep stress at bay even though its not easy. You should be fine. We deal with things as they come. Right now I have been breaking out with skin leasons, Doc not sure, My Iga is a little high, have Rheumy appt in 2 weeks. Stomach acting up also, taking meds and hopefully this too shall pass. Good luck honey and just believe.

I am so glad you are having good results with plaquinal. Unfortunately you will probably flare again. Make sure you get stress free time and rest. hugs marilyn

Thank you both!! I will be sure to get rest and de-stress as needed!!

Yeah for remission! May it last forever!
Mary Ann

Kudos to you,

Plaquenil works for some of us! I've taken it for six years. Dryness...I take a lot of FISH OIL. The kind that is not in capsules or tablets. Liquid that pours straight from the bottle. The flavor that I can tolerate is mint. Minty Fishy Freshness. I also include a lot of salmon and bass in my diet.

There is a website pharmacuetical companies established 2 years ago to provide low cost or free meds to those of use who need a little help...I have not used it yet but here it is...internetdrugcoupons.com

Glad to hear you feeling better.

Tawanda

CrisD

Remissions are common with MCTD. From January through the end of March, I was manging to stay out of the hospital which is the longest I've ever been out at one time, but in the end of March, all heck broke loose and since then, it's been insanity. So, I haven't had a "remission" for longer than about 3 months and I'm unsure if that would even be considered a remission...

Plaquenil was the first drug they put me on for MCTD and it worked.. I did not ache and could function and do things.. Good luck and i hope you feel better soon.

Katie

can I take fish oil if I have to be on coumadin. Has anyone been using vitamins to help with MCTD issues. I take CQ-10 good for heart and gums. biotin, skin, hair, nails, glucosomine-chondrotin with msm for joints.aphildolphilous for digestion, and colitis issues, magnesium(this is a big one) B-12 and B-6 for energy, folic acid (another big help)ginger for cholestrol control and stomach issues. cinnamon for good ldl and niacin for high hdl.apples for lung function. an apple a day and all that....
hope this helps. be well

I' was diagnosed with mctd and rheumatoid arthritis last week after having excruciating joint pain moving around from joint to joint flaring a couple of hours after going to bed and keeping me up all night, the pain would go away by noon the next day, but then the joint would ache. It comes and goes have good days and bad, I already had sub acute cutaneous lupus and raynauds which I have been taking the plaqenil 400 mg. a day for 11 years, does your rheumatoligist know about all the supplements you are taking. Just started the fish oil, any other reccomendations would be helpful, Thanks.

Hi Annette, you aren't feeling to great huh? Flares really get us down and for me it becomes a "just get thru each day" as best as i can kinda mode. I have RA and Raynauds also with the MCTD. The Ra can be a killer with sleep especially nights and mornings. Although some of my vits are script strength, thru research, I also added alot on my own and let the docs know. MTX is a big one for some vits causing side effects so I am sure to check with docs. They should know anyway for when they run tests.
My VitD, Folic Acid are script strength and I get B12 infusions every 6 weeks and also take BTOTAL everyday. My Neuro ran a full Vit panel and since we have added Magnesium, Calcium, A, E. and K and I eat bananas everyday for potassium. I have to say after a few months of all this most of the nerve/muscle twitches, charly horses, and hot spots have calmed down quite a bit. I don't know if it's all due to raising the vit levels or the flare just subsiding but I feel a whole lot better. I was never big on Vits, now I don't forget.
Hugs, donna