PMR and Biologics/Infusions

[suzirandy]

Hi, I'm 14 months in now. I tapered off the Pred 2 months ago and within a week the pin was back in full force. So went back on 5mg. Pred to taper every 30 days 1mg. I'm at the end of the second month finishing wit the 4 mg. and the pain is returning again. I am also taking Methatroxate. I'm afraid to taper any further. Has anyone tried infusions/biologics or know anything about this path to remission?

[SheffieldJane]

I have been on this site for over 5 years and have never known anyone to go into remission in 12 months. I would advise you to go up to a dose where you feel comfortable, buy a pill cutter and follow one of the slow tapering programmes on the FAQs on here. Then taper by half a mg .This disease just won’t be rushed.

[piglette]

I am afraid at the end of the day steroids are the one thing that really help PMR.

[MrsNails]

Hi Suzi,

From your Bio its not clear where you are from but in the U.K. Biologicals are not licensed for PMR though in the USA they do use them.

At this time Prednisolone is the way forward, l take Methotrexate as a Steroid Sparer but am on a higher dose of Pred than you (11mg at this time) but you will need to drop by 0.5mg & using a slow taper as listed on our FAQ Page to help. 2.5mg & 1mg Prednisolone Coated & Uncoated are available in the U.K. to assist you in your taper.

Sorry This link is NOT working at this time…

healthunlocked.com/pmrgcauk...

Kind Regards

MrsN

[DorsetLady PMRGCAuk volunteer]

See this link to understand your illness initially - it’s a marathon, not a sprint despite what you may have been told, or would like -

healthunlocked.com/pmrgcauk...

And this on how to do a slow taper -

healthunlocked.com/pmrgcauk...

If you manage your illness correctly, you usually do not need to add in other medication - Pred works.

[SnazzyD]

Hello, I understand your frustration. However, I don’t know what you’ve been told about the course of PMR but to have come off Pred in the time you did was very unlikely to work because the autoimmune activity is likely still there. This is a condition that lasts more than two years in the great majority of people though some docs think they can blast it out of existence with various approaches. Our meds are safety nets against the inflammation, not a cure for the out of kilter immune system that is attacking the wrong things. The extra steroid sparers are usually used to try to keep the minimum required dose to keep your symptoms in hand as low as possible when there is difficulty in reducing past a certain point after a long time of trying. Again, some docs see them as instead of or better than Pred but that is certainly not the consensus and the UK doesn’t licence Methotrexate for PMR. The bottom line is that your body decides when it’s done not by someone’s schedule, again some docs don’t see it this way. The lower your dose of Pred the slower you must go to fine tune that minimum dose to keep your symptoms under control. Your pain says you’ve overstepped that line whatever is in your medicine chest. People normally go back to where they were comfortable and reduce much more slowly in smaller steps. Just for comparison I was taking weeks to drop 0.5mg a time once below 10mg. Autoimmune conditions seem to defy the take this and fix it approach to medicine and many of us are forced for the first time in our lives to slow down, get off the ride and take a different approach to life or suffer disappointment and frustration continuously.

[PMRpro Ambassador]

Only 1 in 5 patients diagnosed with PMR gets off pred in under a year. If anyone has encouraged you to think it is likely they really have been leading you up the garden path, I know of no guidelines of any sort that bases the reduction approaches on significantly less than 2 years - by which time about a third of patients are able to stop pred. Half of patients need pred for more than 6 years, albeit at a fairly low dose. The fact you got to 1mg and had to stop before the pain was back suggests you probably would get away with well below 5mg. And while there is a biologic that would work for PMR it is not approved - and is a very heavy duty drug, also associated with side effects that are probably as concerning as the long term effects of a very low dose of pred.

However - knowing rather more about your journey would be very helpful - could you please add some info to your profile to help us help you. Even knowing the country where you live is essential because of the options available to you.

[Amkoffee]

When I had to stop taking prednisone due to osteoporosis my rheumatologist had me try Humira, Enbrel, leflunomide and methotrexate. None worked to relieve the pain. I however get some mild relief from Excedrin. But I suspect it's due to the aspirin in it.