Steroids

[Red65]

Hi everyone

A lady in clinic (patient ) told me once I come off steroids I would feel bad.last Monday I had them reduced from 3 to 1.

Pain under the scar has increased, is this just healing process, what can I expect now their reduced or when their stopped? .

[Kristian]

Hi Red,

The steroids are usuall tapered down gradually over about 2 or 3 months by about 5mg each time. I never really noticed any difference and coming off them didnt worsen anything. I suspect what you are feeling is just part of the healing process. However, it's always worth raising with the consultants at clinic, particularly if it's something new. Obviously if it gets worse or you start showing any other signs that you should looking out for then speak to the coordinators to check.

[Red65 in reply to Kristian]

Thanks..I agree

[Peter_Plymouth]

Only to add to Kristian's comments that steroids are usually tapered down 5mg at a time over several months - I'd check with your consultants that they meant you to go this fast and if the pain changes or get's worse then straight back to the clinic coordinator.

[Red65 in reply to Peter_Plymouth]

Thanks Peter..the pains manageable.

I was on 4 steroids after transplant, then reduced to 3 after 4weeks..now 1.

[ThreeSmiles]

Hi Red

I was told the pain was due to the nerves healing and it would take 5/6 months to get better.

Like Kristian, for me reducing steroids had no adverse effects I’m glad to say, in fact for me my hallucinations stopped when I finished with the steroids - coincidence?

My 🤞🤞🤞 for you.

Miles

[Red65 in reply to ThreeSmiles]

I was thinking the same. .getting sensation back on the skin too.

[ThreeSmiles in reply to Red65]

That’s good 👍. Some bits have never come back sensation wise for me - but I think that’s to be expected 🙃

[Red65 in reply to ThreeSmiles]

We can't complain can we.

[Peter_Plymouth in reply to Red65]

Pleased your sensation has returned - I still have huge swathes of my tum downwards which still have no sensation.

I'm hopeful time is a healer but I'm an impatient patient!!!

[Hidden]

Good morning Red65,

As our lovely members have suggested, please contact your medical team to describe your symptoms and to discuss tapering of your steroids.

Your own team should be able to talk you through your healing process and recovery specific to your own medical case.

Best wishes,

Trust9