I am trying to come off prednisone.
Everytime I try to decrease my joint achy again and painful. Even when I am biologistics. Which Enbrel did not work .. going to try humira next.
But I am wondering. Maybe the meds are working but I am having withdrawal from decreasing prednisone.
If so, how long does that usually last?
I was off for a month and pain was pretty intense and starting up again, but never went above 15mg.
I started to decrease again to 10mg. And aches returned.
Love some insight ... has anyone else dealt with this?
Thank you.
The idea is to start at a higher dose and then to taper down to the lowest dose that you can tolerate. You don't say how long you've been on prednisone or how long you've had PMR or why you want to get of prednisone. But your body is telling you that you still have inflammation from PMR. And the best way to treat that is with prednisone. I am a witness to the fact that PMR pain does not respond to pain medicine. If you want to get off of prednisone and want to treat your PMR differently then I suggest you join the many sites there are for people that do that. The people can give you advice based on their own experience what has worked for them. I am assuming you are working with a doctor.
You need to reduce very slowly, like no more than 1 mg per month and at the lowest doses as little as .5 at a time. Withdrawal pain should only last a few days. If it stays, or seems to get worse, or if it develops a few days after starting the taper, it's more likely to be PMR not withdrawal. The secret really is a very slow taper to get you to the lowest dose which controls your symptoms until PMR finally decides to leave. For some people that can be higher than for others, but you can only find it by a very slow and careful taper. Unless you have very serious reactions to pred a very low dose will cause very few side effects.
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
If you have PMR then it is KNOWN that the anti-TNF biologics don't workboth Enbrel and Humira belong to that group of drugs). The only biologic that may work is tocilizumab/Actemra which has recently completed a Phase 3 trial for GCA. There are only pilot studies with very small numbers for PMR and it seems to be working there toobut it is a very expensive way of attacking PMR so is only likely to be on offer in the USA. Genentech are helping with funding for GCA, don't know about for PMR though.
I really do not understand why doctors mess about with putting patients on medications that have been shown to have little or no effect in PMR and where the advice in the international recommendations for management of PMR specifically advises against using them. I think it is unfair on patients to experiment with them, particularly when it isn't as part of a clinical study where you are closely monitored.
It also has a lot to do with how you go about decreasing the pred dose - you cannot do it in big steps. The smaller the better.
You will find a link to the Recommendations about half way down this post
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and in the replies part of the thread you will also find a slow method for reduction which has worked for many patients to reduce successfully to low doses and even off pred WITHOUT using additional drugs. Even when they have struggled with other methods.
I don't have PMR.
I have seroneg RA. Possible have UC that might be the culprit.
Just have a hard time coming offf prednisone. And seeing if anyone else has joint pains from reduction or is the RA causing it?
Thanks.
Sorry - I assume people posting on this forum have PMR and you can have both PMR and RA.
PMR tends not to cause joint pain, it is muscular - so I doubt we can help you.