Advice on interpreting test result and deciding on action

[Hidcote]

I have been on 4.5 mgs for a month. As I was getting some stiffness, I asked my GP for CRP test. Some of the stiffnesss may be due to musculoskeletal issues and doing reformer Pilates to address the fact that I am quad dominant and need to strengthen my glutes. I am also dealing the with the death of a close friend and the imminent death of a friend so my stress levels are high. My CRP has gone from 8.1 to 13.6. Mg/L. When I was first diagnosed in March 2021 it was 87.7 Mg/L. Since then, as I have slowly reduced from 15mg of pred, my CRP has been under 10 Mg/L. Is the increase significant and do I need to do anything?

I have increased to 5mg of pred for two days but would appreciate some advice on whether to stay on this dose for a bit or even increase further for a few days to take out any inflammation as for a flare . I am now on holiday for a fortnight but will have to deal with the funeral of one of the friends so it will not be entirely stress free.

My GP practice is wonderful in helping me manage the condition. I cannot speak more highly of them. It’s a great blessing.

[DorsetLady PMRGCAuk volunteer]

I think more likely due to stress of losing one friend, and potentially another one in quick succession- my condolence.

Think you need to treat as a flare and maybe follow the advice in this link -

healthunlocked.com/pmrgcauk...

..and maybe back down to 5mg rather than 4.5mg, and maybe stay there for a month before you consider another reduction - you may have been just on the cusp of enough/not enough Pred anyway… and current situation will take time to resolve.

[SnazzyD]

I agree with DL. I’m so sorry you have this to contend with. I will also add caution on your choice of exercise from my personal experience. After Pred, and for you PMR too, the muscles are not like they were and I found that one can’t just decide to strengthen up and do what one used to do. It goes against what we think and there is no specific advice as far as I can see. Pilates was too much and even basic moves caused severe muscle stiffness that lasted a week or even two if I upset the ligaments as well. I have had to get fit enough to do it and any other strong or sustained exercise. For me that has been a few years down the line but we are all different, plus I was on GCA doses.

[PMRpro Ambassador]

"As I was getting some stiffness" - and the CRP is on the way up: you cannot rule out a flare.

Don't underestimate the effect stress and bereavement will have on an autoimmune disorder - it pokes at the immune system and anything can happen. Whatever your lowest CRP was is what you should aim for. A single raised value is not a signal to increase the dose of pred, you should have the test repeated a week or so later to establish if there is a rising trend which would suggest a flare. CRP is a very non-specific marker and can be raised as a result of exercise - and it MAY be due to the Pilates related muscle aches. If it is, it should fall as the muscle aches resolve with rest.

I did Pilates with PMR but I wasn't on pred then (it kept me going in the absence of a diagnosis, without it I was immobile) and I had been doing it for some years. But I did have to go back to basics and behave like a total beginner. I don't know what reformer Pilates is other than using machines? However - having just watched a video online for quads and glutes I can see it would be all too easy to overdo a session.

Your muscles are not as they were pre-PMR and pre-pred and as Snazzy says, you may need to get fit enough to get fit! If you have stiff or sore muscles after a session, you have done too much and NEVER exercise on sore muscles when you have PMR. The training effect comes from the tearing of tiny tears in the muscle spindles healing and if you overdo it, those microtears can take days to heal, sometimes even weeks, when you have an autoimmune condition. And if you really overdo it, they may NEVER heal properly.

[Hidcote in reply to PMRpro]

Thank you all very much for your help. I have learnt so much from this site.I had thought adding 5mg for 7 days and dropping back to 5 for a bit so it was reassuring that Dorset Lady and SnazzyD counselled the same approach.

I was really interested in what PMRpro commented about muscles and exercise. I do 1 to 1 Pilates with an amazing teacher and I think both she and my Physio would be interested in anything that has been published about research into muscles, exercise and Polymyalgia

Many thanks for the time you put into responding to queries.

[PMRpro Ambassador in reply to Hidcote]

Not a lot as yet! There is hope of a study being initiated though. My comments were on the basis of knowledge from a physiology degree many years ago!!!!

[tangocharlie in reply to PMRpro]

They said in the AGM that Anne O'Brien a physiotherapist who got a grant from PMRGCAuk to look at exercise and PMR/GCA, is concluding her work and writing up her findings along with guidance, so hopefully we will know more soon

[Hidcote in reply to tangocharlie]

Thank you. It will be god to know more

[Viveka in reply to Hidcote]

You're lucky to have a good pilates teacher. Because you're now 2 years into pred/PMR and I think there is a cumulative impact on muscle strength, I think you should discuss taking the exercise level down a bit, perhaps more focus on gentle stretching than strength, for a while. When things settle then you can start to build again. Adrenal territory will be having an impact too as well as the sad events.