On Actemra, C reactive protein up a bit and some thigh pain

[1988jtb]

Hi,

I am PMR/GCA patient in US taking Actemra so I realize I may not receive a big response but thought I would give it a try. I am currently taking 30 mg prednisone/day and a monthly infusion of Actemra-3rd month. I started at 60mg/ day of prednisone back in August, 2024. Just got monthly blood work back and CReactive Protein is still less than 3mg/L (safe range). but it is higher than the previous two months. I am recently experiencing some thigh pain when walking up hills or doing squats. Does anyone have any ideas what might be going on?

[DorsetLady PMRGCAuk volunteer]

Could be a flare -and as you are on Actemra then your CRP is unlikely to be raised.

This link contains info on how to treat a flare -

healthunlocked.com/pmrgcauk...

But you probably need to discuss with your medical team.

[1988jtb in reply to DorsetLady]

Thanks so much for your reply. Yes, I am worried why CRP is slightly raised this month even with Actemra. I read that CRP readings are not reliable while on Actemra. Going to rheumatologist for infusion tomorrow and I hope to receive more answers. From the other replies, I am guessing I was trying to do too much and this led to Flare? Perhaps the Actemra infusion tomorrow will help.

[SnazzyD]

You mention walking up hills and squats. If you are doing much of these, it may also be your muscles and/or ligaments complaining because of that. They become much less happy about exercise when on Pred and are more easily damaged, especially on high doses and if you are getting the muscle wastage one can have.

[1988jtb in reply to SnazzyD]

Thanks for your reply. This is first time my CRP was raised, although only slightly, while I have been taking Actemra. I was thinking that maybe it was muscle myopathy causing the slight rise and/or perhaps it is a flare I am not receiving enough prednisone/Actemra to keep inflammation down- but that is very unclear to me. It is confusing.

[PMRpro Ambassador]

Your CRP due to GCA/PMR SHOULD be low because of the way Actemra works - CRP and ESR can't be used to monitor disease activity in GCA and PMR when you are on Actemra. My rheumy checks them every 3 months I think but when I asked him he said it can be raised for other reasons.

Thigh squats are not particularly good for PMR ravaged thigh muscles - repetitive actions tend to result in DOMS (delayed onset muscle soreness) and high doses of pred such as you have been on also make muscles and other soft tissues rather delicate. I would moderate the squats a bit. Many of us find walking up hills hardwork - even small ones!

[1988jtb in reply to PMRpro]

Thanks for your reply. This is first time my CRP was raised, although only slightly, while I have been taking Actemra. I did read that CRP readings are unreliable while on Actemra, but any change is startling. I was thinking that maybe it was muscle myopathy causing the slight rise and/or perhaps it is a flare I am not receiving enough prednisone/Actemra to keep inflammation down- but that is very unclear to me. It is confusing.

[PMRpro Ambassador in reply to 1988jtb]

It could also be a cold or something else - CRP isn't specific to PMR/GCA, it can rise for other reasons. And if you are overdoing it with exercise and developing sore muscles, then that too could raise the CRP, never mind muscle myopathy which is more likely to express itself in a raised creatine kinase level.

If it were muscle myopathy, the some experts feel that high intensity exercise should be avoided as it can possibly worsen the situation.

emedicine.medscape.com/arti....

[RunnerJoe]

I've recently had to give up jogging due to several strained muscles in my legs over a short period of time. I suspect that the prednisone has caused the muscles to be weaker and/or less flexible. I'm also PMR/GCA living in the US. I'm currently at 15 mg prednisone daily and weekly injections of Actemra.

[1988jtb in reply to RunnerJoe]

Thanks for your reply. You are first person I have found that is PMR/GCA ; on a fairly high dose of prednisone and also on Actemra. From all the answers I received, I'm guessing I am trying to do too much. I am not a runner but I used to do walks 3-4 times a week (2-3 miles) and also some decent strength in the gym about 2-3 times a week. I read about muscle myopathy from prednisone and I thought well I better try to work out more often. Thanks again.

[PMRpro Ambassador in reply to 1988jtb]

No - not more often! It is important to do exercise to reduce the risk of myopathy though I'm not sure it can prevent it altogether, but your rest days are as important as the exercise days and more often than not you need to start from a much lower level of intensity of exercise than you were used to pre-GCA/PMR and then build up slowly and carefully to avoid developing DOMS - prevention is definitely better than cure in this case. Do a less-than-usual set of exercise and rest the following day to assess the effect it had on your muscles. That doesn't necessarily mean do nothing, it means use other muscle groups - for example, walk one day and do LIGHT arm weights the other. When I say LIGHT I mean start with no weight while doing bicep curls at the start!

I know you are thinking this woman is crazy but several men used to pretty heavy duty exercise have learned the hard way that trying to push through has resulted in a lot of pain, a long recovery and the absolute opposite of what they were aiming for!! PMR and pred have changed your baseline and what is "normal" - and if you try to fight them - they will always win.

[RunnerJoe in reply to 1988jtb]

I have been able to walk consistently pretty much every day during the year before I was diagnosed with GCA and also after. I walk 4 miles most days, but I've hiked some lately where I went up to 8 and a half miles. I also do a session of weights and stretching every other day. The weights aren't very heavy. I haven't had any muscle problems with the walking, stretching, and weights.

[1988jtb in reply to RunnerJoe]

Good to know how you are handling exercise. I will have to find a level where the muscles are being used but not damaged. This is all such an adjustment particularly when we are also constantly changing prednisone levels and taking Actemra. Hard to fully understand the effects that these drugs are having on our bodies.

[RunnerJoe in reply to RunnerJoe]

I guess the key is to reduce the amount and intensity of exercise to what your body can handle. I'm hoping to run again at some point, but that's TBD,

[1988jtb in reply to RunnerJoe]

Hang in there. You sound like you are on a good path. It really helps me to know how others are working to get through this illness and still enjoy a bit of exercise/movement.

[RunnerJoe in reply to 1988jtb]

Thanks! You too.

[PMRpro Ambassador in reply to RunnerJoe]

If you haven't already had the encouragement - one day you may well get back to it. Skinnyjonny did:

healthunlocked.com/user/Ski...

Scroll down a bit and read about his post-PMR expedition to Annapurna IV!

[RunnerJoe in reply to PMRpro]

Thanks for the encouragement, and the link to Skinnyjonny's posts. It's amazing what he accomplished, and very inspiring. I'll have to dig deeper into his posts.

[B_healthy in reply to RunnerJoe]

Hello. I read these posts, which are all quite helpful, as my wife was diagnosed with GCA two years ago. She’s gradually reduced her daily prednisone to 5 1/2 mg and has been on a very strict vegan diet with low salt and carbs (misses the bread and pasta the most). But her exercise is daily swimming, which she does for about 45 min per day, for several years now. Her muscles are not sore as this is a low impact exercise and she feels good afterwards. I would suggest swimming if you have access to a pool. It may provide much of the needed exercise without the pressure on joints.

[1988jtb in reply to B_healthy]

Now I did not think of swimming- and my son is a swimmer and I belong to local pool. I will definitely look into that.

[PMRpro Ambassador in reply to 1988jtb]

Be careful though - if you have PMR too shoulders don't always like some strokes. I can't swim much but I really enjoy aquafit, sometimes with some adaptations. And you still need to build up slowly!!!

[SnazzyD in reply to 1988jtb]

I was really fit before diagnosis. It is dispiriting to see muscle melt away and our first reaction is to go for exercise to build it back up as if we are recovering from a bad virus and a week or two off activity like before. This is no longer the case and you have to find a balance between keeping moving and not hurting your muscles and ligaments. This often means doing what one might class as a piffling amount. I had to make do with walking only and not power walking either. It is individual though but if you make sure you have rest days to assess any fallout you should find your baseline.

[1988jtb in reply to SnazzyD]

Thanks. I also found my "power" walking days are not happening and told myself well I will just have to work on it. After reading all these replies, I have come to realize that I will have to work on finding a baseline to keep muscles in fair shape without inflicting any further inflammation.

[SnazzyD in reply to 1988jtb]

Yes, and start with ‘pathetic’ and work up. Don’t forget maintaining range of movement in all joints and muscles, GENTLY! 🙂

[1988jtb]

I don't think you are crazy at all and I appreciate your honesty and bluntness. I certainly have not exercised like I used too but I did not realize that I have to step back and start and stay at a much lower baseline. This is so important to know before I cause more damage.

[PMRpro Ambassador in reply to 1988jtb]

I assume this is for me? There are plenty who'd call me crazy 🤣

Just a heads up, if you want to reply to someone specific, make sure you click/tap on the Reply button that is part of that person's comment rather the one a bit lower down - they will be notified and it will also say your comment is in reply to that person. DorsetLady and I see everything so would see it anyway but others may not.