Steroid myopathy (muscle/ tendon weakness)

[mrsQuics]

Has anyone experienced steroid myopathy? How do you know if any weakness/ aches is this caused by pred or the need for more pred due to extra stress/ hitting a tapering wall?

[Hidden]

Hi mrsquics, i havent got steroid myopathy, i don't think!

Re tapering. I think it can be a very personal thing. When i reduce if i get a pain in my right shoulder that or the next day i know it the steroid withdrawal. I take paracetamol which helps. That doesnt preclude that i might start to get burning achy thighs by the about day 7 to 15days onwards i know i gave dropped too far, have hit my wall and need to go back up. I see if the thighs are better in a couple of weeks before i start a taper again. Rinse and repeat.

I

It might suit you better to use one of the slow tapers if you ate not already. If you look at the bottom of the page at the pinned posts there's Dorset lady's slow taper thread.

[PMRpro Ambassador]

Steroid myopathy is characteriised by loss of muscle bulk - I had it when on methyl prednisolone and my trouser legs were hanging on my thighs. And if you though PMR fatigue was bad - it was peanuts compared to what I had with steroid myopathy.

[Hidden in reply to PMRpro]

Definitely not got that- and by sound of it don't want it. If chris froome wasnt a cyclist i would say he had it with his thin legs and round body (for cyclist).

[mrsQuics in reply to PMRpro]

gosh ... That is frightening ... Good to know that actually seeing loss of muscle bulk is a clear marker and that we are probably dealing with peanuts atm !!!! Am I right in thinking i've read on other threads that you are out on the other side of pred/ pmr flare PMRpro?! .... Needing some hope!!!

[PMRpro Ambassador in reply to mrsQuics]

Me? 'Fraid not - having a major flare but it is a tad complicated ...

It is unusual for it to last so long - 5% are long term patients.

[mrsQuics in reply to PMRpro]

sorry to hear that, really hope it settles eventually

[HeronNS]

I'm guessing my loss of strength (not pathological but certainly noticeable) is due to pred as I had not lost strength prior to diagnosis, nor did I for the first few months of treatment. However I think the fact I've kept active throughout has helped it not become too bad as I know it can be a very serous problem for some.

[Blearyeyed]

Steroid myopathy , as the title hints is , nerve and muscle pain and weakness caused by steroid use . Therefore , use of Pred can be the cause.

This is not suffered by everyone , just an unlucky group.

This is often severe and needs to be diagnosed by a Doctor and usually requires a move from the the steroid you are on or steroid sparers and intensive therapies like physio over months or more depending on how badly you are affected.

This is different from Neuropathy pain , which you can suffer , or notice that you suffer from , in any of your joints because of an illness , like PMR , Fibro and other nerve related illnesses .

Neuropathic pain is often the pain that people discover they are suffering from while reducing their steroid intake , as the Pred at higher doses was able to mask ( if not assist) the pain we may suffer that is not PMR related.

If you had any form of neuropathic pain regularly in any joints before having PMR, for any reason , this is likely to be what returns , and may feel more severe , if you haven't been receiving medication for nerve pain , and , because the nerve issues may have got worse from inactivity or the nerve/ muscle weakness that can happen with steroids , the neuropathy can feel worse or different than before and be very tiring.

Often , we get so stuck in a cycle of thinking about Pred/ PMR that we forget we can get pain or issues from other things.

Whichever pain you might have it is best to discuss it with your GP or Specialist before continuing with your tapering so you can get the extra help/ advice from them ( medical or complementary) that can diagnose the right condition and help you continue with your recovery.

Hope that was helpful , bee x

[mrsQuics in reply to Blearyeyed]

Thank you .... Also for your offer of pm last week re fibro/ pmr ... Am enquiring for my mum, will take you up on discussing more, just want to make sure I get all the facts from her/ not missed anything out ... Just under the gp also.many thanks 😁

[Hellyowl]

Hi. I have GCA but shortly after starting pred I had muscle pain in my arms and legs and weakness. At one point I couldn't climb stairs. More than one doctor had agreed it is the pred. My physio reckons pred causes the muscles to weaken. I use stretching excersises for the pain and paracetamol. I won't take other pain meds they give me a collection of side effects worse than pain. Pilates is my life saver. If I miss it for a couple of weeks I totally stiffen up.

[Studland]

The strongest part of my body has always been my legs. I am 17 months into pred, having reduced from 15 to 2 .Pain is slight, and can walk 8/9 miles. But my legs have shrunk, they feel weak and often are a bit stumbly, as if they do not belong to me. I am blaming the pred.

[mrsQuics in reply to Studland]

gosh 8/9 miles sounds good ...as does getting to 2mg ...but feeling weak and stumbly not so great ... A quick google looked like the muscle can be rebuilt over time, fingers crossed for you

[Casia in reply to Studland]

That’s exactly how I feel. I’m on 2.5. ( started pred in March 2017). I swim, can walk for around 2 hours without too much discomfort and do Pilates about 3 times a week. But my legs are so much weaker than they used to be and I’ve shrunk to a size 10 in trousers as there’s very little muscle in my thighs and buttocks. On holiday and doing quite a bit of walking is very tiring so I’m having to really pace myself.

[bunnymom]

I don't have steroid myopathy but I feel weaker since taking pred. Early days it was very easy to strain a muscle doing practically nothing. Currently at 7.5 and don't have the straining issue as much.

[mrsQuics]

that sounds positive that at a lower level of pred and even though bern on it for longer the straining issue has decreased

[Dream21]

For me, it is a mixed answer. The tapering of Prednisone was very hard on my body. I had extreme lethargy, dizziness, etc. I was couch bound. Now was muscle weakness caused by tapering or total exhaustion and dizziness due to the taper?

It is hard to sort out the two.

After the taper, I took Gentle Yoga to stretch joints and gradually regained strength. I did it in a chair and gradually could get up and down on a mat to do various gentle asanas. It reduced my pain to zero, stretched joints and tendons, and improved my energy. It erased my pain and gave me a better quality of life.

[mrsQuics in reply to Dream21]

thank you for that, that's very encouraging that you can feel that depleted and rebuild very slowly. Can I ask how you managed to finish the taper feeling that exhausted and dizzy? Any tips welcome, it sounds like you could only start the stretching after as was so exhausted during?

[Dream21 in reply to mrsQuics]

Yes. I only started very gentle chair stretching after the taper and feeling a little recovered. I just went very slowly and accepted it as part of the process. Others have suggested a very slow taper. I agree. It was difficult, but I came out the other side. There is hope.

[mrsQuics in reply to Dream21]

thank you ... Can I ask one more question please?! ... At what mg of pred did you start to struggle with the taper?

[Dream21 in reply to mrsQuics]

I started struggling with the last 10 mg. Your adrenal gland needs to start producing cortisol again, hence the extreme fatigue. I think it is around 7 mg, someone on site will know the exact number. Hang in there and let me know how it goes.

[PMRpro Ambassador in reply to Dream21]

No exact number - everyone is a bit different, This is biology, not physics!!!