Methotrexate advice and other things

[Hidcote]

I am writing to thank you all for your help and update you on my condition. Any further help would be gratefully received.

I got PMR in 2021 started on 15 mg of pred and successfully reduced to 4.5mg last year, although my CRP never got below 7.6. I was able to be very active, walking 5 miles and enjoying life. Last August, a dear friend died for whom I am executor and since then I have been unable to get the inflammation under control and the lowest I have got is 14.8. My last blood test was 48.8 because I keep flaring.

The increase in steroids to control flared have upset my stomach and i have also struggled with what I think is IBS and have had to take a lot of PPIs. (I may switch to an H2 blocker.) I have now changed to enteric coated pred but I gather that even they can cause some discomfort. I am seeking an appointment with a gastroenterologist.

The inflammation has affected my muscles and made my musculoskeletal issues worse. I am waiting for the results of an MRI scan to see if I have spinal stenosis. Although I am grateful for the pain course at the local Nuffield gym , the repetitive nature of the exercises was not helpful probably because the inflammation was not under control. My physical condition has deteriorated and I am now grateful that I can walk to the shops, although driving is problematic.

I have had a lot of wise advice and help from Rod Hughes who I have consulted by phone. He recommended trying a Depro-Medrone injection to reverse the flare symptoms. My surgery does not do these and I have a private appointment with a local rheumatologist.

However, last week,I had an appointment at my local NHS hospital and have agreed to try methotrexate as they were unwilling to increase the steroid load via injections. I have reservations about methotrexate but do know it works in some cases. I have read Mrs Nails really helpful advice in FAQs for which I am really grateful.

I am debating whether to start the methotrexate injections this week or wait until I have seen the private rheumatologist early the next week.

I am convinced stress lies behind many of my problems but as they themselves create the stress it is difficult to become more peaceful.

[Mamamia21]

Sorry to hear you are having problems. I have been on methetroxate to help me reduce steriods and I have been one of the few people it has helped. I thought I would give it a go to see what happened and I have been able to lower my steriods but it has taken me a while. If it is not working Methetroxate can be stopped fairly quickly so I felt it was worth a try for me.

[PMRpro Ambassador]

I think you are quite right about the stress being the source of the problems - I was up at 19mg pred by the time I'd got through my husband's final illness and the aftermath. Being executor is hard work - my son in law is currently fighting his way through it and he is young and healthy.

I think you are also right to wait to see the private guy first - the MTX won't work quickly and the injection MAY get you back to normal as a baseline for the MTX to work on if it is going to work for you since you have to try it to find out if a) you can tolerate it since many don't and b) it does anything for you at all since it doesn't always.

[Hidcote in reply to PMRpro]

I got the letter from the rheumatologist yesterday and he did not understand the reason for the injection which is to reduce the inflammation. He also said he could not see active PMR which is odd as I have a CRP of 48.8 and some stiffness. It all adds to the stress.

Will delay the methotrexate until I see the private rheumatologist.

[PMRpro Ambassador in reply to Hidcote]

"see" active PMR - what is that supposed to mean? You can't "see" active PMR, that is half the problem. My rheumy, PMR expert though he is, tends to do the usual rheumy assessment, pressing joints and expressing surprise I have no pain. The RA assessment means nothing, my joints never hurt and very rarely swell. They did a study to try to work out why patients express having far more problems than their examination identifies. I tried to explain - if you look for the wrong thing, you won't find the probem!

[springeramber]

Hi Hidcote

I resisted methotrexate for a while because I did not like the sound of it but eventually gave in. - it was tablets but did not agree with me - I was very nauseous after it took them - was on tocilizumab and got down to 3.5 - left on 5mg but now flared and back to the drawing board!! Good luck to you - anything’s worth a try !!🥰