Why is coming off steroids so difficult?

[LyndaGould]

I've recently managed to slowly wean myself off prednisolone but I am really struggling with the side effects of withdrawl - muscle pains and cramps, joint pain, and fatigue. Has anyone else experienced this and if so how long does it last?

[PatriciaAnn]

Hi Lynda

Some people seem to be able to wean off them more quickly than others. I got down to about 20mg with few problems, thereafter it was difficult and I came down in 1mg per month until I got to 7mg. I couldn't get any lower for months, then I tried again and finally got off them about three years ago. Unfortunately it didn't last and my old symptoms started to come back. Unfortunately I needed the steroids again, but not for as long at the higher dose. I now take a maintenance dose of 5mg daily and that seems to keep the aches and pains away.

I'm no doctor but it sounds to me as if you ought to speak to your consultant or GP about this.

[LyndaGould in reply to PatriciaAnn]

Thanks Patricia I was the same in that this is my third attempt to come off them. My GP has warned me that I may need a maintenance dose but I'm trying to see if I can stay off them this time. Will give it another while and chat things over with the GP again.

[Hidden]

One thing to have checked is whether your body is still producing its own steroid (around 5mg as I recall). Extended use of pred. and other drugs can stop the natural production.

Bear in mind also when tapering that it's not just a question of reducing by a milligramme but think in percentage terms too. 5mg to 2.5mg is 50% and so is 2mg to 1mg.

My own withdrawal was done using alternate days once I got below 5mg then two days without etc. I took 3 months to come down from 2.5mg and had no adverse reaction.

Certainly something to check with your consultant.

[LyndaGould in reply to Hidden]

Thanks Martin, I did have my cortosoid levels checked (is that the same as steroid test you were thinking of?) and they came back normal. I had bloods taken in the morning and in afternoon.

This time, I followed a tapering regime that was slow having rushed it before. I've been coming down 1mg every month for the past 12mths and the last reduction was down to 1/2mg then I went to alternate days. So I don't feel that this was rushed. My GP suggested that the steroids have been masking other normal pains and aches since I aged having started them 4 years ago. I struggle to make sense of this 'diagnosis' because the aches and pains are in nearly every joint. I'll give it another while and then chat to my GP again.

[BooBoo39 Volunteer in reply to LyndaGould]

Hi Lynda, i was experiencing joint pain prior to my current flare up ... the pain was gradually increasing over 3 months ... Jan Feb March this year i was checked for rheumatoid arthritis etc but all clear. Through May i got progressively more fatigued and at a greater level than my remission fatigue level . Start of June major flare up and 40mg Pred.Within 3 days on the dose although the Vasculitis brain numbing headaches were raging i realised i had no joint pain. Initially i put it down to the strong pain relief i was on... However as we started to reduce the Pred but maintained pain relief the joint pain returned not as bad but definitely there. still there. To suggest it could be pre existing condition quietened by the Pred or maybe another sign of vasculitis.. Not sure? Like you the pain was in all joints which makes me wonder if its the CNSV in some way. i am now reducing Pred down for the 4th time, each time when i get between 20 and 15mg joint pain starts to become evident as does the CNSV symptoms. So frustrating... RE bodies normal cortecosteroid production i believe normal amount produced by the adrenal gland is between 5.0- 7.5mg. Hence the tricky balance when you get down to lower doses because if you stop too quick the body can go into adrenal crisis and a slower reduction is trying to kid the vasculitis but also encourage the body to produce its own cortecosteroid (pred). A finely tuned balancing game unique to every individual. Clearly one that we don't seem to good at mastering ..

Good luck !