Advice on dealing with relapsing polymyalgia

[Hidcote]

I was diagnosed with polymyalgia in 2021 and started on 15 mg which was probably too low a dose. By July 2023, I had slowly reduced to 4.5, although my CRP never got below 8. In that August a dear friend died for whom I was executor starting off a year of stress.. Because I have musculoskeletal issues, it was not clear what was happening and I don’t think the flare was jumped on hard enough. After my Covid jab in November 2023 my CRP went up to 55. I consulted Rod Hughes and followed his wise advice and managed to get my CRP down to 14 in April 2024 but it has been repeatedly flaring since then. The increased doses of steroids upset my stomach and, I had to go on to coated pred, which has helped, although I still have stomach problems. In July my CRP was 48. Rod suggested a depro methodrone injection to get rid of the inflammation but getting to Chertsey is very difficult because of the musculoskeletal issues and the complex journey from here. My GP, who is very helpful, is not licensed to do these injections so in August I took an appointment with my local NHS rheumatology department and agreed to go on methotrexate which I inject. The rheumatologist was helpful and I had a scan to check for GCA but he did not understand my argument that I need to reduce the residual inflammation before I can reduce. His view was that with methotrexate I could be off steroids in 9 months. I tried a private local rheumatologist but he didn’t listen to my argument about the need to get rid of the residual inflammation before I could reduce, and suggested I would be off steroids in 2 years.

I have now been on methotrexate for three month but don’t think it is having much effect. I have twice followed flare procedures and once got the CRP down to 13 but it is now hovering around 20. The inflammation is affecting my muscles. My arches are dropping and my glutes don’t engage properly so I need to exercise but over exercising is a problem. Doing the free Nuffield course in the spring had a bad effect on my upper back muscles and I am now getting DOMs in my glutes.

I don’t think I can reduce until I can get rid of the residual inflammation and this requires increasing the steroids,. At the moment I am on 12mg. All the yo yoing is not good so I think I need to increase to 20 for some time and then drop to 17.5 and then to 15 but I am not sure about how long I should stay at these doses. The only other options is to see Rod in person but I am not sure how expensive an injection would be and how many I would need. I could go back to the rheumatology department but they are very anti steroids and would probably want to increase the methotrexate dose.

Please could I have your wise advice?

[PMRpro Ambassador]

"My GP, who is very helpful, is not licensed to do these injections"

I'm really not sure I'd believe that - in some places the nurses can administer them! And I know one lady with GCA whose partner was taught to give them. It is a deep i.m. injection - "licensing"????

Three months is not long in the great scheme of things with MTX, it often takes up to 6 months to have any effect - but I really don't think this rheumy has had many PMR patients if they reckon you can be off pred in 9 months. If MTX was that good, they wouldn't use pred at all, they would be using MTX for everyone. They don't.

Personally, I am far from convinced this is "just" PMR to be honest. But I am also not sure you need to push the raised marker showing residual inflammation - piglette has also had permanently raised markers but nothing has been found to account for them. On the other hand - YOU have symptoms that have not been accounted for and they don't sound straightforward PMR. Someone needs to think outside the box.

[Hidcote in reply to PMRpro]

Thanks for this. I am in a place of great despair because there seems to be no way forward and the last bout of exercise has upset my glutes and made walking difficult and painful.

I have wondered if there is something else going on. The scan only looked at my temples and armpits.

Do you think I should stay on my current dosage of 12 and see what happens, I don’t want to upset my stomach further but am lost about what to do. I am still being monitored by rheumatology so I could contact them.

[DorsetLady PMRGCAuk volunteer in reply to Hidcote]

I am still being monitored by rheumatology so I could contact them.

Always worth a punt… you do need advice from somewhere.

[PMRpro Ambassador in reply to Hidcote]

Does anything here ring a bell?

my.clevelandclinic.org/heal...

roh.nhs.uk/services-informa....

Someone else on the forum was diagnosed with gluteal tensinopathy recently - I'm sure she said the physio is quite specific and previous physio hadn't helped. But my main point is - it isn't always PMR.

[Pixix]

you could try & look for another GP who will do the injections, perhaps. Mine has been doing mine for years, & I don’t think he holds any licence, tbh, one GP ihad wouldn’t do them, but said another GP in the practice could do it for me. She said she just didn’t like doing them, personally, so referred people to other GP. It was within the same surgery, though. You say you have bad musculoskeletal issues…could the inflammation be linked to them…or linked to something which has nothing to do with PMR?

[PMRpro Ambassador in reply to Pixix]

That sounds much more like the truth!

[Pixix in reply to PMRpro]

I will ask him, as due for injection soon! S x