Hi, I visit the forum every few months. PMR for over 12 years. Wondered if anyone has been on prednisone for PMR for over 12 years and able to get off pred for good. I only take 3 mg, have been off for brief periods but always have to come back. Wondered if it is worthwhile to try to cut further or just stay where I am. Never have had any side effects. 66 year old male. Thanks
David, sorry to hear you can't get off completely. My Rheumatologist said <5 mg a day is OK. However, I suffered side effects of osteoporosis and pre-diabetes., so make sure you have bone scans and a glucose tolerance test. So I am trying to get off altogether, but with recent flares I'm back up to 15. Very disappointed. I also have RA so that complicates it. If you're managed on <3 that's pretty good. Have you seen the posts on the SUPER gradual method of lowering your dose? Like 1/4 mg a month?
Experts estimate that about 5% of PMR patients have what they call refractory PMR. I've had PMR for 13 years and I know at least 4 others on the forums who have had it similar times, some even longer. I do know of one man who was on pred for 11 years and had given up hoping but still kept trying - and he DID finally get off pred.
I suspect that within a few years we may be offered a trial of tocilizumab/Actemra or one of the other biologics in the pipeline for GCA/PMR. Whether it would work to get the PMR totally into remission remains to be seen though.
However - if 3mg is holding the symptoms - why rock the boat other than occasionally having a very careful go at a further reduction? I won't! Having re-attained 5mg I'm very tempted to rest on my laurels!!!!
I know people who are on pred for the rest of their life.
Some of them as young as five (not with PMR or GCA) pred is used in quite a few -auto-immune illnesses.
Have you tried either of the two reduction plans, free of charge, sent by email. 'Dead Slow and Nearly Stop' '
and 'Tortoise and Hare'?
Actemra had too many side effects for me... if you are good at 3mg pred... I'd be tempted to let that be. I guess I'm the refractory PMR complicated with RA. But so lucky to be fully functional and able to do sports!
I must admit I wondered how people with PMR were being given Tocilzumab (re-named for some reason Actemra.
It is still waiting approval for use in the UK for GCA, No clinical trials, as far as I know have been done on PMR. But it is approved for use in RA.
Glad you cleared that puzzle up for me.
It has partial approval for GCA by the FDA, last time I looked.
Isn't Actemra the brand name for tocilizumab?
Yup, I looked it up before I posted.............I had forgotten that they changed the name and the same drug can have different names in different countries.
Eileen had sorted me out a long time ago, but put it down to old age.
Thanks Eileen, I am with you. Have reduced so many times only to flare up again I think I will stay at 3 and be happy. All scans and blood work seem to be fine and I hate the thought of increasing again. Thats why I asked this, I wondered if being on pred this long had a chance to completely go off it. Think I will stay where I am, good luck to you and all the others. David
Tocilizumab is the substance name - Actemra is the catchy name the drug company chose for the purposes of catching attention in their marketing. What patient would hear "tocilizumab" and go to their doctor and ask for it? (This is for those countries where advertising to patients is allowed). Not that doctors are significantly better...
Eileen
When I went to Roche, I just called it Toxi, I just could not pronounce it..........and when I tried it sounded like gobbly de gook anyway. Never thought about advertising..........
Only people who have worked in the sector would - luckily I was just indirectly involved ;-)