MCTD Fatigue: Hi everyone! My last post cut off... - LUPUS UK

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MCTD Fatigue

Sianied profile image
6 Replies

Hi everyone! My last post cut off most of the writing, so I am hoping this one works!! Anyway I am a 30 year old woman and was diagnosed with MCTD 3 years ago and have been on hydroxychloriquine ever since, which seems to do the trick! However my flare ups are becoming more frequent recently, all the usual symptoms, aches, pains, fever etc. I have a really demanding job as a senior manager and I have around 90 staff working for me. I am still working full time but recently I have had to have some time off (2 weeks) as I am getting so tired. Does anyone have any miracle tips for getting over the fatigue?!!(I am sure we'd be millionaires if we did!!) I am determined to carry on up the career ladder and I won't let this illness stop me but sometimes I worry that I may have to if I get any worse

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Sianied profile image
Sianied
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6 Replies
Purpletop profile image
Purpletop

It isn't an easy choice, this. I sympathise with the desire to continue with the career but something will have to give. Have you spoken to your rheumatologist to see if you can add a stronger medication to your hydroxy? That would be an alternative, I think.

SarahHeney profile image
SarahHeney

I would get checked out for both anaemia and low vit d by your gp. Both are very common with us and it could be an easy fix. Fingers crossed.

mstr profile image
mstr

Hi there, I would definitely see about a different type of med as suggested above. I sounded pretty similar to you until I was getting to the point I couldn't get up out of a chair, lifting arms above head difficult, walking up stairs etc difficult. The bottom line was that the rheumy said at the time it was lupus and myositis. If I had left this and not gone on the methotrexate then more damage could have been done. As it is whilst the methotrexate is not an easy drug it is helping a lot. Please don't ignore it for the sake of your career as you could do yourself more damage in the long term. Take care.

Sianied profile image
Sianied

Thanks for taking the time to respond, it is really helpful. I have an appointment with my Rhuemy next week so I will definitely mention a stronger med. vitamin D as well is a good call, the sun is something we lack here in manchester so very likely I am lacking that!!! Thanks again xxx

jetchickwithmctd profile image
jetchickwithmctd

Hello, I''m new to the forum. Diagnosed 3 years ago with mctd at age 46. It is a battle I have fought since my teens but recently diagnosed. May I inquire as to your Dr's suggestion at your last appt? I find vita D takes the myalgia down a notch however no help to the overwhelming fatigue. It seems to be worse the older I get. Low dose daily Prednisone helps me A LOT.

Sianied profile image
Sianied

Hello! I have been told to go on to methotrexate, so far I haven't started this as I am getting married in 4 weeks and I wanted to wait until after just in case I don't take to it. So for now I am just still trying to cope, but I would say every month I am needing to have a couple of days off work due to fatigue- not good

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