Immunosuppressant - is this how it is meant to feel

[icecream2965]

Just started an immunosuppressant, day 3 and I feel like crap. Achey, tired, like I am coming down with something. Just called 111 as everything hurts.

Had some water and walked around and it has gone down a notch.

Is this normal? They said the clinician would call back. I also take 10mg citalopram which I have taken for a month.

Really good to hear anyone's experiences of immunosuppressants as feel rather alone right now.

It's like a hangover isn't it. I'm three years in and still suffer. General advice is take it before bed and sleep through the worst, take it easy the next day, stay warm, keep moving gently and drink tons of water (I have about two litres in 24hrs) as these things are never kind to liver & kidneys. Good luck & take it easy.

I have taken a few for ulcerative colitis. They have different side effects. I felt terrible on Imuran (azathioprine) and had to stop. Mostly fatigue and nausea. Prednisone has lots of side effects. I am now on Entyvio which is an infusion. The only thing I notice is some fatigue for a couple of days, and it is working.

If you are comfortable with saying, what are you taking and why? Then those of us with experience can weigh in.

Thank you both so much for your replies. It's like a club no one wants to join. I had some water and took some magnesium, not sure why, I saw a thread mentioning it and remembered I had some and thought it might help. I was spiralling into negative thoughts which make the stress feel worse. Feel less achey and spoke to a lovely nurse on 111, so slightly reassured it does pass and it's not permanently how it feels. I can cope with bits but not constantly awful.

It's sirolimus for a rare condition (it's only prescribed for one of two things).

A hangover is how I'd describe it. I started taking it at night, I think I could have tried to sleep earlier tonight before it kicked in. I very much wanted to keep warm yesterday, spent it in my dressing gown working in bed with a hot water bottle in between fresh air walks. That's a really good point about water, I do drink a fair amount but I will make sure it's 2 litres.

Thank you both for answering late at night (or it is here).

Hi OP. It is still evening here.

I read about the drug you are taking and what it is for. How terribly hard and scary. I hope it works and you can tolerate it.

I can only say keep your nerve. You are right autoimmune disease is the club no one wants to join. So scary. So tired. So hard to explain.

I have not taken that drug. I can only speak as someone with an autoimmune disease.

I hope your doctor has told you what side effects are serious. I have toughed out a few. It is always worse at first. Paracetamol has helped. You may find in a month you can tolerate the side effects. But if you are feeling really bad please get urgent help.

Rest always helps. Also cutting yourself slack. Only you know how you feel. Do not let health care providers dismiss your complaints.

Love and caring thoughts to you.

Just one more thing, about hope. It is hard right now, especially for those of us with chronic disease. Let's try to keep it alive and support each other. Hang in there OP,

Hi, thanks for your reply. Yes they did say what was serious. I think I made it worse by google, so will stay off that. Rest is definitely a good plan. And paracetomol. Fingers crossed.