Coming off Steroids

Hiya I’m not an expert been on and off steriods since last year and now back on them.. I’ve tapered down from 20 to 5 and too scared to go lower until the actermera works hundred percent.: but never experienced those side effects so it could be a bug.. I suffered more with the mood swings etc.. not nice but on flip side they were the only medication that managed to get me moving again..

On a separate note I watched a document called super juicing and there were some people saying that diet and juicing helped put there chronic illnesses in remission so think that’s worth a try

Good luck hope you get better soon

Hi no I’ve been on prednisone for four years tapering from 10 to 3 depending on flare ups. All I get is tired and morning joint ache if I reduce to quickly I only ever do 1mg reduction a fortnight. Hope this is helpful. I don’t take any other drugs.

Hi Guinevere,  I’ve been on steroids rather like Helen trying to reduce very slowly or my joints would ache, then something would happen, often my chest as the methotrexate caused some lung fibrosis, which would need me to increase my dose again.  Just for information, I had a persistent cough which I thought was the fibrosis and I was stuck with it. At the time I also developed sciatica which was so painful. I ended up in hospital with pneumonia and hadn’t a clue!   I had IV antibiotics and increased steroids again. The steroids really masked my symptoms. Doing fine now apart from the sciatica. No cough! Steroids down to 12.5  No symptoms like you’re describing, but beware, steroids can mask symptoms significantly.  I was really poorly (CRP 350) and didn’t know.  Take care Carol x 

Just a thought, Guinevere, but have you checked your temperature? When my doctor saw me for my ‘sciatica ‘ I felt lousy, maybe more like you do than I first thought and it was only when she found my temp to be high she was suspicious. Just something to “rule out”?  Carol 

Hi

i too have rituximab and mxt. Is your rituximab infusion wearing off? I have one every 7 months. Wondering if that s why you re achey again. I have had 4 rounds of Rituximab and at one point near the beginning was also taking pred. It took me over a year to taper off and below 5 mg it just took months and months of very small,very slow tapering. But have not had it for 2 years now as if Rituximab is timed correctly I don't have a flare- just a thought if you re seeing you rheumy. Also - as someone else mentioned, pred does mask infection symptoms so def worth checking your symptoms aren't something else.