What’s causing my symptoms? Pred? Flare? Or something else?

[Sandy1212]

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.

[Spanielmadlady]

Hi sorry to hear you are struggling right now.theres not a great deal i can answer.im on pred currently 8.5mgs when I get down to 7.5mgs my lungs flare.prednisolone changes your appetite and makes you hungry.thers is usually a big change in mine when my steroids are low....I dont seem to eat half as much.dry eyes do they feel gritty ? Do they puff up.? You might have sjorgens which often goes with lupus.i have it and I am prescribed salivix pastels for dry mouth and use hypomellose eye drops.

Best wishes xx

[Sandy1212 in reply to Spanielmadlady]

Hi there! Sorry that your lungs flare when you are reduced, that must be awful i hope they figure out how to overcome that! Yeah it does increase my appetite but not by a lot and i try not to eat junk food to fill the change as well which is why i find it odd that this time when they were increased around my weight gain was so drastic. That’s interesting your changes when theyre low, mine my appetite goes back down as it is reduced. They dont puff or feel gritty. I have heard of sjorgens i will look it up! Thanks for your post xx

[Jmiller623]

Could be small fiber or cranial neuropathy symptoms. I have constant congestion and mucus just on my right side. I think it’s because by swallowing mechanism and esophagus can’t push thick stuff down so I hack it up instead.

I have ridiculous fatigue. Exercise is all that helps. I also would get super swollen randomly and I think this may be from MCAS. I’d gain 5 lbs in an hour or two. All water weight from sudden whole body swelling. Lots of things simmered down once I figured out triggers - rice, red wine, histamine high foods - and started antihistamines. Montelukast also helped.

With regard to steroids, they always do a number on me and I gained 30 lbs last time I did a 6 mo high dose taper to no steroids. It took me 6 mos to even become functional after stopping steroids. I take a medrol pak here and there when I’m doing really bad. I’ve been able to lose 20-25 lbs of the steroid weight. I can’t do any upright exercises so I row and bike. Waiting to try IVIG for cranial neuropathy. Can’t say that’s what is going on with you but if you feel like something is off, it probably is. Let your doc know so it makes for a good documented timeline should you need escalated treatment.

[Sandy1212 in reply to Jmiller623]

I think i have come across neuropathy before, i will do more looking into it!

Sorry about the fatigue but glad to hear that exercise provide some relief! I had a quick look at MCAS because it’s interesting you mention swelling and water weight since i am definitely having a lot of water retention. It could very well just be my lupus causing swelling and i think steroids can cause water retention(not 100% sure) but then it doesn’t explain why so much this time around.

Sorry you had such a difficult experience with steroids! I hope that you are able to steer clear from them for a while! Good luck with the IVIG as well! Thank you i will let my dr know i think at the least it should be flagged.

Thanks for posting x