9 years and counting with PMR!

[MC60]

Feeling frustrated having been 'diagnosed' with PMR in 2014, initially controlled with prednisolone and then Methotrexate introduced in 2018 after I queried my diagnosis and treatment plan. Initially I was able to reduce preds down to 5 mg daily with 25mgs methotrexate weekly but I am ow struggling again with 10 mgs daily. I have Alendronic acid weekly, folic acid weekly, Calcichew daily and I am also on Gabapentin, Etodolac and Atorvastatin daily.

Unfortunately I had COVID in March 2020 and I was in ICU on a ventilator. It has been suggested that my long term use of Prednisalone helped me recover when many did not at that time.

Last September I saw a new Rheumatologist who doubted my diagnosis and so a PET scan was arranged. I came off methotrexate and reduced preds to 5mgs a day. I could barely move and I was in a lot of discomfort when the PET scan was done. My Rheumatologist then rang me, told me that the scan showed that I had severe PMR and that I should restart all of my meds!

I am struggling with fatigue, muscle loss and general stiffness in movement.

Has anyone else out there had PMR for 9 years with no end in sight. I want to get off the drugs.

[PMRpro Ambassador]

I'm at nearly 18 and counting ... There are several on the forum at over 10 years.

There is a version that lasts a long time and relapses, I have had a couple of relapses for trying to reduce too far or dodgy tablets and both times it was hellish trying to get it under control again. Now I am on Actemra because my rheumy decided it was the only option - and even with that getting much below 10mg is not easy.

It is known there are 3 mechanisms of inflammation in GCA in half of patients and I suspect the same applies for some PMR patients. Slowly doctors are realising PMR doesn't always go in the couple of years they are so keen on quoting. You are the second in recent weeks to say their Long PMR has been proven to be just that, Long PMR. I just hope the doctors learn - and it would be lovely if they published some case reports.

Another feature for most of us with this long version is the disease activity seems to increase over the years - meaning needing more pred.

[MC60 in reply to PMRpro]

Thanks for replying so quickly. 18 years - wow! Best I better get used to it then and be more accepting. I have just insisted on a yearly follow up with my consultant - if you don't push for it thay are happy to let you just get on with it. I have bloods monitored so I shouldn't complain but feeling a little low today. At 62 years of age I feel like I am facing a lifetime on drugs that are certainly not good for me!

[PMRpro Ambassador in reply to MC60]

It does sometimes go away even after 10 years - I know of 11 and 13 years successes. We must have been similar ages when it started - mine appeared the summer I was 52 but it wasn't diagnosed until I worked out what it probably was! I don't stop to think about the drugs - jam today me! This time last year I was up at nearly 20mg after a massive flare after my husband died - and had needed nearly as much while he was ill the previous 2 years. It is what it is and I was able to get on with things.

In fact, at present more of a problem is the atrial fibrillation that the autoimmune part of the PMR almost certainly caused.

[arvine in reply to PMRpro]

Sorry PMRpro, but didn,t know how else to contact you, I have sent message to admistrators, re haven,t recd anything in my outlook, email from Health Unlocked since Mar 13,? said were going to check out, but haven,t heard anything, don,t know if you have any idea what could have happened, but if you do, appreciate any advice you may have how to resolve my issued, don,t understand, thank you

[PMRpro Ambassador in reply to arvine]

Have patience. It happens to all of us sooner or later - I have had weekends with no notifications, I go onto the forum - a page is bookmarked - and I look for the posts and replies that are new. I can't do anything about it for you, nothing to do with me. If you have emailed Support then they know. YOu can repeatedly email them - remind them you exist.

As for how to contact me - I and DorsetLady are the easiest persons to find on this forum, we see everything that is posted and read it ...

[DorsetLady PMRGCAuk volunteer in reply to arvine]

As PMRpro says you just have to keep badgering HU, no matter how frustrating that is - we have nothing to do with the working of the platform…..

[suzy1959]

I echo PMRpro's comments.

I have had PMR, diagnosed by PETscan, for 11 years so far and never got reliably below 11 mgs Pred. It is so frustrating isn't it? So many doctors have looked at me in disbelief and some Rheumy's have even suggested that it is my doing!

I have just recently developed diabetes and a bulging disc with sciatica, but also had a lot of problems with osteoarthritis. I have terrible problems with insomnia. Who knows how much the PMR and/or Pred have contributed to those. I am glad to say that my bones are ok so far, so no AA.

So welcome to the little club within a club that no one would want to belong to!

[Plains in reply to suzy1959]

hi, I see you mention getting. PET scan for diagnosis of PMR. What exactly does it show? My doctor never ordered one.

[suzy1959 in reply to Plains]

I think it was because they suspected it wasn't PMR but might be something worse! Most people have to reduce their Pred for the scan - I didn't and was on 11mgs ,and it still showed up inflammation in the shoulder and pelvic girdles- classic!

[PMRpro Ambassador in reply to Plains]

There is increased uptake of the radioactive glucose marker in the inflamed areas - and it can look like the images here

ncbi.nlm.nih.gov/pmc/articl...

[Plains in reply to PMRpro]

thank you! Very interesting article. I am keeping in in a file I created.

[Rose54]

9 years for me

Manage to get down to 7 each time then back up

Currently on 9mg a day and have been for 2 weeks now .

Good days and bad days

Suffer from anxiety which l am sure is caused by Preds

[DorsetLady PMRGCAuk volunteer in reply to Rose54]

As you are in single figures, I would say that your adrenals stuttering may well be causing your anxiety.

..and the fact that you seem to hit a brick wall at the same dose may be a combination of PMR and adrenals.

Can I ask what the problems are at 7mg.

[Rose54 in reply to DorsetLady]

Sorry not replied soonerAt 7 trying to go down to 6.5 pains in hips come back.

So l know l need to stay at 7 more than a month

Anxiety has been a problem since starting Steroids but not every day.

Problem is l end up with Palpitations and then spend time in A&E

I had Heart Attack 4 years ago and Palpitations where the only symptom hence needing to be checked out each time.

Looking into some talking therapy at present with Mental Health services.

I do go through periods of extreme fatigue but this happened long befor PMR as they thought my diagnose was extreme fatigue .

but will bare what you are suggesting in mind

So Thank you

[DorsetLady PMRGCAuk volunteer in reply to Rose54]

Not a problem… sorry to hear about hips - which is probably just too low a dose [for now] and it won’t do any harm to stay at 7mg for a bit longer. That may well help adrenals as well, which I would say may be adding to anxiety problem.

Guess you are already using , but if not, then introduce one of the slower tapering plans as well.

Hope you soon feel better..,.

[Rose54 in reply to DorsetLady]

Thanks

Have used dead slow since 10mg

[DorsetLady PMRGCAuk volunteer in reply to Rose54]

Thought you were, but not always easy to remember who’s doing what…😊

[Ann1A]

''facing a lifetime on drugs that are certainly not good for me'' ... well yes, and its an awful thought, but on the other hand you'd be a great deal worse without them. That's what I tell myself, anyway.

[Jackoh]

Yes I was diagnosed in 2015, so a long time for me too. Was at 7.5 mg, had a bad fall, went up to 12 mg , then down to 9 mg and trying to stabilise at 7.5 mg.I think we have to try to be grateful for small mercies and look at all the things we can do, rather than can’t . I know that’s hard but it is quality of life that really matters at the end of the day. To have caught Alpha covid, been in ICU and on a ventilator and bounced back is a tremendous achievement, so I believe you can cope with anything else life throws at you. 💐

[Davidj16]

I know people who are still on 5 mg. Prednisone daily to control PMR after 20 years with the disease…they seem to handle it much better at that low dose than any of the other meds they have tried…I discontinued methotrexate after 3 months as I did not like the way I felt for 4 days after taking it ..I’m currently on 5 mg. Prednisone every 8 hours at my own discretion after much research and feeling very good with no side effects..I will begin tapering 1 mg. every two months soon.. and my rhumy is mad that I wasn’t off prednisone in one year …this is about my quality of life and I’m far too busy for side effects and pain

[casse]

yes diagnosed October 2014 PMR, then December biopsy for GCA 2014. Lowest dose I ever got down to was 4 mg just recently had a GCA flare and back up to 12 had two hip replacements each time they bumped the prednisone up to 20 as had complications, it’s a long struggle some people seem to come off really easy. Others just doesn’t work that way I’m waiting for better health they won’t do my knee replacement until I get off antibiotics several battles with cellulitis and a lot of urinary track infections. I know how you feel it’s discouraging, but when I feel down, I consider myself blessed when I would go to therapy and I would see what some of the people are going through . It’s tough to try and hang in there. I will pray for you.

[1951grumpa]

MC60, I was diagnosed in October of 2011. Many flares, MTX for several years. It seems that 5mg works best for me now.