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Autoimmune disease

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Steroids side effects getting me down.

2 replies

alpenguin · 17/05/2024 09:07

I've been on high dose prednisolone (Steroids) for three months, unable to taper down because my autoimmune condition flares quickly when I do. I'm on immunosuppressants too but they're not helping with this particular problematic symptom, they need changed by the department that prescribes them won't see me until December and the department prescribing the steroids are waiting to see if the steroids work before changing the immunosuppressants. Appointments with all the relevant departments are so far away and my GP won't deal with it because it's specialist led.

I'm so bloated (moonface, giant belly, legs swelling etc that didnt exist 12 weeks ago) and have an awful side effect of profuse sweating without much exertion. I'm so embarrassed being seen out in public because my face is so distorted, bright red and dripping in sweat, and my hair is drenched, even when it's not particularly warm.

My partner is getting annoyed with me for vocalising how uncomfortable I am with how I look. I look like a completely different person and it's hard to come to terms with. It feels different, my face hangs different. I'm stuck on these steroids for a long time and the side effects have kicked in far quicker than last time (last time they left me on high doses for 4 years). I've never been vain, Ive never been good looking but I had come to terms with the face I had and now I have a very different one. I dont have mirrors in the house but they seem to be everywhere I go when I'm out.

I already have osteoporosis in my 40s because of this. Im hating this, I'm hating my life and I have no-one to talk to about it because no-one wants to hear me feel sorry for myself. I'm so fat despite the fact that the steroids have suppressed my appetite and I'm barely eating. I'm moving far more than usual because the one great side effect is the energy they give but that makes me sweat more. I cant win.

I know theres no magic cure. I know this is the next six months minimum of my life. I'm just so bloody sad this is my life now.

OP posts:
BellsAndFootfalls · 18/05/2024 08:13

OP I am so sorry you're going through this. It sounds really, really tough. Is there a charity associated with your autoimmune condition that has set up local support groups or an online forum? Talking to people in the same boat can be helpful. I'd also be asking for an appointment before December, see your GP and explain how you're feeling, ask to go on a cancellation list? I've got everything crossed for things getter better for you very soon.

Moongazer23 · 19/09/2024 20:23

@BellsAndFootfalls
im not sure what to do as far as I’m aware I don’t have an auto immune condition.
Im only late 20’s and been having tests done for two years as when I was 12 weeks with my 3rd child I’ve suffered with high blood pressure and it didn’t go away like they thought within six months of birth.
I’ve spoke to my gp and they was the ones that urged me to go through pals to try and get somewhere with my results as my bp suddenly went high even tho it had been okay with a certain medication so they had to add another one alongside to bring it down. I questioned them about results and they said it wasn’t their place to say anything because I’m under the specialist and it was the gp who instructed them to investigate so I’m at a loss

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