Are flares as debilitating as PMR original presentation
Posted , 15 users are following.
Ive been on my initial dose of 20mg prednisone for a few weeks and feel great. Pain is gone and have begun daily walks. My next visit to GP is in 3 weeks and I expect to be told to reduce to 15mg or 10mg at that time.
I've been reading a lot about the slow prednisone taper method (DSNS ?) and it seems the best way to reduce dosage while still getting enough prednisone to keep PMR in check. 20mg to 15mg reduction will be greater than 10% reduction and although 15mg is still a large dose there is a possibility of a flare.
How will I know if I am having a flare Do flares appear suddenly and knock you back into the excruciating pain and inability to move or are they more gradual? will it be obvious to me when I have a flare?
Thanks in advance for any responses.
0 likes, 48 replies
jones10939 OregonHazel
Posted
I did post link to a page of various tapers but it's delayed for moderators
EileenH jones10939
Posted
And deleted I see. Send it to me as a PM - if I think it is worth it I will bend the EMIS moderator's ear about not allowing relevant stuff - the new staff are a trifle, um, illogical shall we say!
jones10939 EileenH
Posted
Sorry - can't work out how to send a message
Silver49 jones10939
Posted
Click on where you see the blue lettering that says message and that will take you to the area you need.
Silver49
Posted
Sorry I should have said you need to click on reply and message will come up under the person's name.
EileenH jones10939
Posted
There is an envelope under my name (or should be) with message next to it. Click on that and then it is like writing a reply.
jones10939 EileenH
Posted
No envelope - in fact no envelope under anyone's name.
jones10939
Posted
Sorted - checked profile settings and Private Message had been turned off.
ptolemy jones10939
Posted
I have to sign in to see the envelope otherwise it does not show on my screen either.
Senormacho OregonHazel
Posted
Wow---would it not be great if some researcher found an alternative to prednasone....one that does not present the side effects and negative risks of pred? And one that the patient can just stop taking once the problem has been resolved, instead of tapering for months on end? Just fantasizing.
Michdonn Senormacho
Posted
I agree Senormacho, but Prednisone side effects are pretty low on small doses. Prednisone is fairly inexpensive, PMR is not a large health risk. l would imagine Big Pharma will invest in drugs where they can make more money. I do hope I am wrong. Some universities were trying to discover the cause, which I think is great. 🙂
EileenH Senormacho
Posted
There is one (probably) - tocilizumab which seems to work for maybe half of cases of GCA. But it is expensive - $17K per year and no-one knows if it would induce permanent remission or whether it will be required ongoing. No health care system could afford that for all the PMR patients.
But it is a biologic, it interferes directly with the immune system - and to be honest, no-one knows the long term implications of that. And the potential adverse effects compared with those of PMR-level doses of pred make pred look an absolute pussy cat.
Michdonn EileenH
Posted
My Rheumy suggested it and several more, but after reading all the side effects I passed and stayed with just Prednisone. That was when I was on 10 mg, now on 4 mg tapering to 3.5 mg. Happy with my decision. 🙂
Flutterbie57 OregonHazel
Posted
I was told to drop from 20 to 15 way back in the beginning, and I did suffer from it. The chemist told me he thought the Dr had maybe taken me down too quick. I had not discovered this site yet, and I find much better advice on here from people like Eileen, than I get from my Dr
Michdonn Flutterbie57
Posted
Flutterbie57, I agree my Rheumy and I have just come to agreement I manage my tapering. When I find new articles on PMR I show them to her and she writes me prescriptions. I use the information that I have learned on the forum to manage my PMR. 🙂