I apologise in advance for the length of this post but i feel like i need to explain everything to make sure the right information is share to get an answer.
So, I was diagnosed with lupus in dec 2018 and i had lost a significant amount of weight. About 55kg i was put on 55mg prednisolone. I struggled to move for weeks and the most i did for exercise for a long time was 20mins stretching and later added 10-15 cardio which was a few times a week. In this time i did put on weight but it was a pretty steady increase.
Throughout this time i would have mini-flares, increased pain, fatigue, tiredness, confusion etc. Nothing significant but obvious changes to the usual level. I got down to 7.5mg prednisolone. Then June 2019 i had rituximab as my ITP flared and was then landed in hospital as it got worse and my lupus flared then was increased to 60mg.
I don’t think i noticed any weight gain this time just the usual puffiness. I have noticed also that i almost constantly have something like a cold (runny nose, mucus build up in throat, cough). It comes and goes but it’s been over a year i would think but every time i bring it up it gets shrugged off. I comment on fatigue they told me it’s just because i don’t exercise. I had joined a gym afterwards but i would still have many times walking up my stairs was too much. Other times i could do 3 exercise classes a week.
Fast forward to this year, i was tapered very slowly until i was down to 6mg. I still had my mini-flares and fluctuation in fatigue and tiredness. When i was originally gaining weight it was the start of lockdown and I wasn’t surprised obviously it was expected and it wasn’t anything significant either. I have been struggling to lose prior to lockdown but was able to maintain my weight at least. I have had my prednisolone increased i think first end of may to 40mg but was increased to 60mg. In a space of a month I suddenly put on 3-4kg. I still have the weird cold i have also had a second round of rituximab. I am on 100mg Azathioprine as well (it was commented in passing that it one of my WBC count was not changed).
To outline the actual symptoms i am currently having: severe fatigue and tiredness, swollen and stiff joints, tender to touch (i have fibromyalgia), dry eyes (this is new), painful hands and feet to the point i cant type /write for long or walk for long (definitely cannot run), a cold that won’t budge and sudden weight gain that I haven’t had before.
Idk i guess im asking does this sound normal and i should just wait it out again? Or does it seem like maybe something else might be going on? I just find it weird that I can’t seem to stay stable.