Life as I know it

MCTD is classicly defined as having symptoms of sle lupus, polymyositis (also dermatomyocitis), and scleroderma. I have MCTD with symptoms of lupus and pm and had an extreme and life threatening case. In 2005 I almost died after losing 40 lbs of muscle in a week which left me with auto immune induced hepatitis (near death), quadriplegic with a feeding tube. Lupus hit my kidneys, entire gi tract, joints, blood, and other things. I was a mess but IVIG saved my life and I went through a remarkable physical rehab and within 3 years returned to a pretty normal and active life. PM went into remission and I have not had to treat that for many years. Lupus also did but 4 years ago attacked my liver and blood (platelets). In the past year lupus has given me periods of profound fatigue but none of the labs confirm that lupus is active. 2 years ago I could hike 10 miles or more but now I can barely walk a mile and get tired going up 2 flights of stairs. Although I am getting older and some other problems have developed in the past 2 years I am struggling with daily life due to fatigue. My team of great docs do not have an answer because there are no red flags from any of the tests I have had including heart. For the first time in my life I was sick for 3 months last winter with bronchitis twice and the flu. That might have been a factor and I am hopeful that my body will recover eventually because I still have a lot of life to live....I hope. My personal belief is that the fatigue is either being caused by lupus or that my body has not recovered from my winter illnesses. A nearly 80 year old body is just not as resilient as a younger one. Lupus and fatigue go hand in hand and that is something that all the lupers I know struggle with. Controlling lupus is the key so if you feel it is active and you are not on suppression meds maybe you should be. Hope this helps.

As mentioned in my post I have already seen the whole list of my docs and been tested for many different things. No red flags. I am nearing 80 but I do not believe that age is what is causing the problem nor do my docs. Despite my many problems (not all listed here) my body has been resilient and I would expect any recoveries to take longer now so I am hopeful that in time I will be ok. Not on any suppression meds and my other meds are not new so it is not meds. That is easy to figure out.

Hi I am 56 years yong. I am on 7.5 mg prednisone daily, I have Addison’s disease so it is a replacement dose. Also florineff for electrolytes as the adrenal gland also regulates minerals.
I take thyroid medication for hypothyroid. And ompersole for tummy protection, I have a motility problem.

So really not much meds. But I am not good at meds.
Methotrexate bothered my liver so I was taken off.
Could not tolerate plaquenil either.

I think it is time to try something else but what?
I tried IVIG and had a life threatening allergic attack while getting it.
I did a month of rituxan for idiopathic thrombocytopenia pupura. I think that is immunotherapy.
It worked well, my platelets that we’re near zero for a year have since stayed at 450+

It seems the only med that I feel better on is higher doses of pred....but it is not a nice drug and my bones
have paid the price

I also deal with fibro I think it might be the cause of at least the fatigue.
I have Lyrica for it, also not a nice drug but I use it when I must.
I have also used baclofen for stiffness and pain it is okay but causes dreadful night terrors.
Then I have my Tylenol 3 that I can use when I need to rest and can’t for pain.

So I think we need to consider something else maybe immunotherapy?
What do you all use?
I am no quitter and I take one day at a time and enjoy everything in it, just wish I could do allot more
than I seem to be able to do now.
Thanks, tuffymason