Steroids

[jojokarak]

Just had my steroids reduced again now on 10 mg, just wondering if anyone else experienced weakness in the arms/body the more they were going down also fatigue, I am doing great apart from that 😀

[Litimag]

I was reduced down to 5mg last week, and I also have had a couple of days feeling like I have been exercising hard.

Hadn't really connected it with the prednisalone until I read your post, but it may well be related. For what it's worth, I feel fine now.

[jojokarak in reply to Litimag]

I had different effects last time I got quite depressed for a few days and muscle cramps. So I was expecting that but I ended up ringing my tx co-ordinator last night my arms were that weak and she confirmed it was the steroids thank God x

[AyrshireK in reply to jojokarak]

This is quite a normal effect of tapering steroids - a lot of Auto-Immune Hepatitis patients get the same when their doses are reduced. It takes a while for the body to re-adjust to having to make its own cortisol as you remove the tablet form.

Hopefully you'll start to feel a whole lot better soon.

Katie x

[RodeoJoe]

Yes, I did the normal 3 months or was it 6 months of prednisolone? after transplant. Then when I stopped I had a real comedown. My joints ached and I felt very tired. I ended up going to the physio about my knees because they were so painful. It very gradually got better but maybe took about 6 or so months. I think it's normal, although for whatever reason my consultants didn't really acknowledge it.

[dizzime]

Hi there. I have had a lot of problems coming of the steroids. Started coming if them last Sep and came off them completely by December. I have been in a lot if pain in all my joints since. Been referred to the Rheumatologist and Endocrinology clinic to see if i have an under active adrenal gland but that was negative. Pain got that bad i have now gone back on 2.5mg of Pred. This has helped a bit and at least i can get around a bit better now. Swmming is helping so much when i am in the water it is the only place i dont hurt. Apart from that i am doing wonderfully. Sorry if this is a bit negative on the steroid front but i was on them for 3 years before they started to wean me off then. This could have been the cause. I hope everything goes ok for you and you have little or no withdrawal symptons. All the best for your future xxxx😊😊😊

[Dudewheresmyliver1]

Yep! I have experienced the same things. They have kept me on steroids even though I'm waiting for a secondary transplant. I personally can't see why.

Going to Birmingham QE on Thursday so will ask about it & the extreme fatigue.

Hope you feel a bit more sprite soon.

[matt137]

Glad to hear you're doing good Jojo. Great news and an inspiration to many of us x

[peteingloster]

Bl&*dy right , tired immediately post-op as to be expected, but just came off steroids and feeling really tired again! everything else is fantastic, hopefully, it will pass fingers crossed!

[jojokarak in reply to peteingloster]

I still not off them still on ten mg but got an appointment on Friday so we will see what they say then .... Hope you improve soon x

[peteingloster]

Just came off them as well; now got tremors back also now feeling really nauseous all the time and really low almost to the point of thinking " what is the point " any more similar feelings to when I was in the hospital but they eventually got less anyone any similar feelings?Anyone similar, please reply! SAD

[jojokarak in reply to peteingloster]

I know others have felt like yourself at moment one of my friends it took about 6-8 weeks to settle but we are all different maybe talk to your GP about how your feeling X

[peteingloster in reply to jojokarak]

Met with GP talked it through! basically spoke about all I've been through and what we've all been through on this site; felt a bit better prescribed Sertraline once a day anybody had them? any side effects?. Will post on side effects if any!

[jojokarak in reply to peteingloster]

I personally haven't heard of them but fingers crossed and let us know how you get on x

[peteingloster in reply to peteingloster]

They seemed to have settled down now simply a follow on from what we've all been on but thanks jojo