Hello everyone. I have not posted for a while but read from the site most days as find it so helpful but am really struggling at the moment. I wondered if anyone else has been told that they have steroid resistance. I was diagnosed with PMR/GCA May 2016 and although managed to get down to 15mg from 60mg in the first year (too quick a taper) have since then not been able to get below 20mg without a flares. It has been suggested by my rheumy that I am probably one of those minority that are steroid resitant and will probably have to stay at about 20mg. I recently managed to get to 18mg and felt well for a few weeks but have now crashed again and back on 25mg and waiting for it to kick in. I think PMRpro has said in the past that the body can absorb from 50% to 90% so maybe I am at the lower end. I am already also on 10mg methotrexate. Could anyone give advice. Sorry to be such a pain.
Steroid resistance.: Hello everyone. I have not... - PMRGCAuk
Steroid resistance.
Never a pain Sorop! That is what we are here for, to listen and if possible help and encourage. Maybe you are reducing too quickly for your body to cope with. Why not just stay where you are comfortable for much longer and then try again using DSNS and a very small reduction. Even a quarter of a milligram might do it for you. I’ve no doubt the Aunties will be along soon with their wise advice!
Thank you stellafmdm I will certainly go even slower and stay on each dose for longer and use DSNS. In for the long haul and try not to be impatient and even well having better days not overdo it which I tend to do.
I don't believe in "steroid resistance" - I think it is just a version of GCA or PMR that is more active and lasts a long time. And that when they force people to reduce too fast (and I'd say you are one) they end up creating a problem where you need more pred for even longer.
But that's just what I think - they won't agree with me!
Exactly. My Rheumy mentioned this term after I flared following HER suggested taper from 15mg, down to 12.5mg in one drop. She also threatened Methotrexate, but I refused so I m sorry I don’t have any advice in that dept.
I too suspect I am not absorbing my full dose. You need what you need.
I was on prednisone 60+ mg for over 70 days and still having issues. My doctor switched me to Methylprednisolone and it has made a huge difference- it metabolizes differently- something to consider. I also split my dose - take at 5am and 5pm.
I have been on 15mg Methotrexate a week for almost 4 years because I was having difficulty with pred, mainly insomnia, and I was told Metho was ‘steroid-sparing’. Who knows if that was the case but I am now reducing from 2 to 1pred. I have gone incredibly slowly reducing from all levels following the Dead Slow method rather than the consultant’s method!
I did not have any serious side effects from Methotrexate that I am aware of. I have not drunk any alcohol since I have been on it as Metho can affect the liver so it is wiser to go teetotal to spare the liver. It is important to have a monthly blood test to ensure that there are no serious side effects.
Good luck!
Thank you for your reply. I do not appear to have any side effects from the methotrexate injections but do not know if it helping either. I do have a monthly blood test which is useful especially tracking ESR and CRP levels. I drink very little alcohol as you say to protect liver.
I must admit I am very sceptical about the suggestion it is steroid resistance, however my alma mater Bristol University did a study which revealed a subpopulation of CD4+ T-lymphocytes which are resistant to the anti-proliferative effects of steroids, and this has led them to propose a model of steroid resistant disease based on the selection of these steroid resistant cells, so I suppose there may be a possibility.
But that is the disease not the person which doesn't respond to pred. I see that as a different concept.
You are never a pain. I wish they wouldn’t bandy unsubstantiated remarks like “ steroid resistant” about. Presumably your acute symptoms were helped. Then you were put on a too fast taper and your body is still confused and protesting. I was diagnosed a couple of months before you and have largely managed my own slow taper from 20 mgs. I think duration wise we are only just over half way. Perhaps they could let you settle for a while. I agree that we tend to absorb drugs at different rates and quantities which will have a bearing on progress.
Did anything trigger your last flare? A chest infection sent me back up to 11 mgs from almost 5 mgs. I am now back to 7 mgs. Percentage wise I am doing worse than you. So far I am being allowed to. Sometimes they just need to be patient, we need time.
Thank you Sheffield Jane.
I am so sorry to complain as you all are suffering too.
I had a month previous to this had genital shingles and also a gastric virus with severe diarrhea and sickness and ended up in hospital on a saline drip but this did not seem to give me a flare but perhaps had a bearing on this latest flare. This flare and the last flare in July seemed to be triggered by feeling better than I had been for a while and I had three consecutive days when I did quite a bit more than usual and so exited and positive about the future and then crashed! Maybe even when I am feeling better I have to be very careful about how many 'spoons' I use each day and do my own thing and stay on the the same pred dose for longer. This disease is so confusing and tapering seems to be the most difficult to figure out as we are all different and advice varies so much from the 'professionals'. Can I ask how you decide how high to go on the pred. I increased from 18 to 19 to 20 and then jumped to 25 out of desperation but it seems I am just picking a number out of the air and hope it finally kicks it into touch. Thank you again.
It is when you are feeling better you need to be careful about the spoons as that is exactly the time you overspend...
Sometimes just 1mg is enough - but a lot of doctors suggest adding 5mg to where a flare occurs for a short time (up to a week to 10 days) and then trying the previous dose that was OK, i,r, a bit higher than where the flare happened.
Yes thank you PMRpro I really must learn that lesson I am my own worst enemy. Life is so precious but limited and I want to make the most of every day so it is hard to rest when one feels the energy to do a bit more and then pay the price but those are the rules this disease seems to lay down (literally!)
I have been told I have become steroid dependent! Strugglng to get to 20mg. Wish they had my head when I flare!
I know when it is withdrawal and not a flare.
That’s another stupid remark they make. Of course we are §…~^_$€ steroid dependent. It relieves the awful pain and stiffness otherwise we wouldn’t touch the stuff. It’s not like it makes you feel great.
Apparently a lot of them think that "pred always makes you feel better...".
I have no idea how to react to all this. Xxxxxx
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