2nd bout with Pmr

[Julesster84]

I got diagnosed in December of last year, get this by my 84 year old retired uncle who was a doctor. My GP hadn’t clue and had me run through stress test to check my heart. I had to sell my home, move and life got in the way so I had to cancel 2 doctors appts. I ran out of meds and my doctor and Cigna couldn’t or wouldn’t refil without an appt. So PMR came back with a vengeance and now I’m in tremendous pain. Can barely walk, getting off the couch is more painful then childbirth I called a different GP doc and have an call in this morning at 7:30! Wish me luck! Got a Rheumatologist appt next Wed!!!

[DorsetLady PMRGCAuk volunteer]

Hi,

So it’s not so much a second bout, but a re-occurrence/relapse whatever you want to call it. It never went away, so when you stopped the medication (which only controls the inflammation caused by the PMR, not the PMR itself) it just started up again.

Incidentally you should never just stop Pred once you’ve been on it for more than 3 weeks, I’m guessing you were, and no medical professional should leave you without.

Moving house in the interim wouldn’t have helped either.

Hopefully between GP and Rheumatologist you will be on the right track this time around.

[Julesster84 in reply to DorsetLady]

So with the steroid only controls the inflammation and what are the medication should I be on. The rheumatologist put me on methotrexate and folic acid,But I didn’t feel like that was even working. What else can I be doing because I can’t be on a steroid for the rest of my life. I thought I could beat this with my mind and good eating and vice versa but it’s back with a vengeance and I’m worse now than I was the first time. Any advice or help from anyone on this page would be so helpful

[DorsetLady PMRGCAuk volunteer in reply to Julesster84]

Hi again,

Unfortunately nothing cures the PMR, so what you have to do is control the inflammation that results from it. So that's what the Pred is for, the MTX is another drug called a steroid sparing drug which should in theory limit the amount of steroids you need to take. Both steroids and MTX can lower the amount of folate in your body, so folic acid is prescribed as well to counteract that effect.

Another drug, Actemra (Tocilizumab) has been wisely used to treat Rheumatoid Arthritis, and has recently been authorised (in the UK) for use in GCA - think it is more widely used in US for PMR & GCA, but it is expensive. But I think that is still only used as a steroid sparing drug, not a replacement.

You won't necessarily be on steroids all your life - some patients are, but its a very low dose. But you do need to be on the correct level of steroids whilst your PMR is still active, and unfortunately can say exactly how long that may be - anything from 2-6 years. Usual is around 3-5!

You should be on a Calcium/VitD supplement which protects your bones.

have a look at this as well - healthunlocked.com/pmrgcauk...

Take care.

[PMRpro Ambassador in reply to Julesster84]

"I can’t be on a steroid for the rest of my life"

Why not? Many people are for other illnesses. But pred is the mainstay of management of PMR. There is no cure.

Methotrexate won't manage PMR on its own - it may allow you to manage on a lower dose of pred. However, for 75% of patients PMR burns out and goes into remission within 4-6 years, another 20% take longer but it does go. Only 5% have PMR symptoms for life.

Methotrexate, leflunomide and Actemra/tocilizumab are all options for using alongside pred to achieve lower doses of pred which still manage the symptoms. I do know people for whom leflunomide achieved them being able to get off pred altogether and Actemra is seeming to be very good - although expensive and not officially approved for PMR. It is approved and being used for GCA and has been used for RA for some years.

[Hidden]

Oh my, very best of luck! I hope GP is able to get you feeling better soon!

PS your Uncle rocks!

[SheffieldJane]

Hi Julesster84,

Hello and welcome to the forum if you haven’t posted before. Thank goodness you have an observant doctor/uncle.

No wonder you feel terrible. PMR will have been rumbling away all through your house move and life stresses. I am glad you’ve got a Rheumatologist appointment. I really hope you get a good one. I expect that you will be put on 20 mgs of Prednisone, stay there for about a month then start to taper very slowly down until you get to the lowest possible dose that controls your symptoms, for the duration. There are good examples of tapering programmes available on this site, when the time comes. In the meantime, you really are going to have to look after yourself by pacing your activities and having plenty of rest. There is plenty of advice available about diet, symptoms, side effects on here. Just ask. Acceptance takes time, this disease is a shock, but once you accept that things will be different for a while it gets easier. Good luck!

[daworm]

I was telling a middle aged lady About being on prednisone and how I wanted to get off soon as I could...I was at 15mg then, 10 now...she said, “oh, I’m on prednisone for life, 70mg” “without it I would probably be dead or wish I was”....she has a few problems associated with it but to her it’s well worth it...I’m also not in such a rush to get off anymore...not at the cost of feeling like crap..