Muscle myopathy

[Robinsnest72]

Hello All. I am looking for someone to connect to who has suffered muscle myopathy after discontinuing two years of prednisone. I have been off for three months now. Hope to get some info from someone who has it. Thanks

[PMRpro Ambassador]

I only had myopathy while I was taking methyl prednisolone - as soon as I switched to prednsione and walked a bit (was on crutches at the time!) the muscles came back.

Has it been investigated?

[Robinsnest72 in reply to PMRpro]

Only by Physio

[PMRpro Ambassador in reply to Robinsnest72]

I think it needs more than a physio - unless they can order blood tests? Having suffered from both, I don't think that it is difficult to differentiate between myopathy and myoascial pain syndrome. Myopathy involves muscle wasting and is obvious.

And really - why myopathy rather than the concept that the PMR is not in remission but the inflammation was being kept under control by a very kow dose of pred - 1mg is often plenty.

[PMRpro Ambassador in reply to Robinsnest72]

By the way - what do you mean by myofashi? Do you mean myofascial pain syndrome? If so - it doesn't always cause pain at rest - I have it and no night time pain worth talking about.

[Robinsnest72 in reply to PMRpro]

Yes, sorry for the mispell

[Robinsnest72 in reply to PMRpro]

Yes, sorry for the spelling. On the computer it says you have it in bed

[PMRpro Ambassador in reply to Robinsnest72]

Maybe, but not necessarily. Depends which fascia are affected - it is probably what causes the tender muscles in PMR and is an integral part of PMR for many patients being part of teh pathology. Which is why I wonder if actually - it is your PMR still.

[Robinsnest72 in reply to PMRpro]

My blood work has always been a good sign of how my PMR has been and right now my CRP is 1.5 and and ESR is 4. Also, Tylenol will help with some of the discomfort.Only blood work out of line is RBC at 5.34

[piglette]

Have you been diagnosed with muscle myopathy? What did the doctor say if you have?

[Robinsnest72 in reply to piglette]

No I have not. Went to Physio last week for jaw popping and he asked me where I hurt. I just laughed and said all over and then he was suspicious of either myopathy or myofashi. He is working on my jaws at the present. I am doing exercises at home and go back this week. Still popping and I am concerned it is arthritis as it has sure flared up since going off pred. Prednisone has a habit of masking a lot of things.

[piglette in reply to Robinsnest72]

I think I would go to a doctor to confirm the problem.

[SnazzyD]

Hello, I don’t know how severe yours is but my muscle bulk has been much reduced but not to the point of disability. I stopped Pred 5 months ago and though I feel stronger the definition hasn’t returned in response to increased activity. However, I haven’t gone into a back-to-the-gym regime. I have spent most of this time doing specific core and pelvic exercises to resolve issues that made more strenuous exercise result in injury and ligament problems. So, getting stronger in order to try to get stronger. Upper body wise, I am still prone to pulled muscles if I do something that I don’t do regularly like sweeping the drive. Before GCA I was very fit and strong and spending hours doing hard labour in the garden was not a problem. I suspect my building up would have been more advanced if I hadn’t had long Covid from March to October and the weather so wet so walking fast impossible due to mud.

[Robinsnest72 in reply to SnazzyD]

Am so sorry you experienced covid. So far I am lucky and trying to stay away from almost everyone. I get very tired walking around with aching muscles but continue to push myself. You are absolutely right that if you do something out of the normal you pay the next day.

[SnazzyD in reply to Robinsnest72]

As DadCue asks it depends on what you mean by myopathy; whether you mean just muscle wasting and the problems that go with it or myopathy where the muscle is suffering some sort of disease process. I guess my problems are muscle loss without ongoing inflammatory changes, but who knows. I don’t know what you mean by “pushing myself”. If you are suffering from muscle discomfort during ordinary movements in daily living, then it may need further investigation so you know whether you are causing more damage.

[Robinsnest72]

Thank you for this info. I am going to look up my recent blood work. The Physio Therapist is expecting either muscle myopathy or myofashi. Right now am dealing with trying to correct jaw popping. My muscles ache most of the time and I also have OA. However my muscles also aches on prednisone. With myofashi it says your muscles also ache when you are in bed and bed is where I feel my best. I notice how weak I have become even when lifting things.

[Robinsnest72]

Just looked up my CK level . It’s is 79 and according to this is can be from 33-165. Therefore it is not elevated so I am assuming it is not myopathy

[Longtimer in reply to Robinsnest72]

I have Myopathy, my CK level is normal.....I will be having scans for the PMR (9 years) but need to sort things out first to see if I have LVV......It is mostly in my lower legs, when I first get up they feel so weak like they will collapse under me, and worse if I get up from sitting....my toes tingle and go blue....After reading some things about it I think mine is Peripheral myopathy.....and so the battle goes on....

[PMR2011]

I read your bio. 2 1/2 years is quick to come off Pred. Am wondering if you overshot the mark and the PMR is not done yet. If you are “walking around aching all the time” sounds suspicious. Bio markers may not be raised as they lag behind symptoms. Hope you figure it out.

[Whitner]

Robinsnest72 I hope you can get this figured out. I have been on pred since October 2019 so almost 1 1/2 years which is a short time by most histories I hear on this site. I have had trouble getting my dose down below 10 mg but I too have noticed that when I participate in lots of exercise (pickle ball in the morning and golf in the afternoon) I end up with a pulled muscle in my left side and have noticed that my skin is very "relaxed" on the sides of my back which makes me think of muscle atrophy too. Every time I get below 10 mg of pred I feel weak. So frustrating that so many things are affected by PMR!

[Longtimer]

Yes sorry....have been for my vaccine this morning....too much excitement leaving the house....😂....very strange feeling in my legs and toes, but as yet not in my arms.....hope I escape that.....yes, the weakness is awful....

[Robinsnest72]

Thanks for your reply. I had pins and needles in my feet always when on pred. Do not have any more. I am struggling so much right now with jaw popping and it is driving me crazy. People say go see the doctor. Not here with covid. All you ever get is a phone call. The rhemy actually discharged me when my blood levels were excellent and I was off pred. I still have a card here to go and am tempted. Also, I have finally started to loose some weight and hopefully that will make me feel a bit better. I am under stress most of the time worrying about our challenged daughter living in a congregate setting who we are not allowed to visit since Christmas. I too am resorting to living with pain but sure wish some of this weakness would get better. Even drawing a pot of potatoes is hard work. However, I push myself to go walking but for three days there is so much snow and wind cannot go out. Thanks for your concern and keep your chin up.

[GerriMc]

I had it quite bad in my inner thighs. Couldn’t lift my legs to use the pedals in the car. I was down to about 5mgs Pred at the time. A lot of sometimes eye watering work by my physiotherapist and lots of exercises helped and it’s pretty much gone now. I’m down to 1.5 mgs now and my shoulders are problematic now. More exercise needed, I suspect. 😁

Oh BTW, my rheumatologist sent me to the physio.

[Robinsnest72 in reply to GerriMc]

Thanks for your reply. Gives me some hope

[knoone]

Same here. I was diagnosed with peripheral neuropathy last May. I have been on steroids for 2 years for PMR and GCA. I do not have diabetes and the doctors don't know the cause.

[Robinsnest72 in reply to knoone]

How does peripheral neuropathy effect you? Like your symptoms?

[Raewynne]

I

[Raewynne]

I suffered severe steroid myopathy when I started on prednisolone this time .It took several months to get better.

[Healthysearch]

Hi... I have been completely off prednisone since mid 2019. I was on prednisone for about 20 months in total. I still have some muscle weakness and fatigue during the day today, Feb 2021 but am better than I was a year ago. I have been taking a few supplements that I think may have helped...multi vitamin, collagen, fish oil, flax oil, DHEA, olive leaf, devils claw and berberine, quercetin. I think collagen types 1,3 help ligament and tendon support which seemed to very much weaker. With PMR. Taking anything that helps with inflammation Is good and avoiding sugar and things than increase inflammation helps.

[Robinsnest72 in reply to Healthysearch]

Thanks so much for your info. I only take vitamin c, d , K2 and magnesium.

[Healthysearch in reply to Robinsnest72]

I also want to say my muscles have come back but are tender on some days but so much better! I lost 20 lbs with Pmr and lost all muscles it seemed. Wish you the very best!

[Robinsnest72 in reply to Healthysearch]

Thanks for your info. I gained 20lbs on pred and have started to loose. I am also dealing with jaw popping and am afraid to eat so that is likely contributing to weight loss. It is three months now since off pred and hoping muscles will improve over time.

[Ssratha]

Yesmy muscles have deterioratedafter five years on prendisolone. Started with gca, two years Later morphed into pmr. Kicked off on 80mg, have weaned to 3 and 1/2. I have lost strength in hands, arms and legs.

[Healthysearch]

Please read up on supplements for connective tissue support and the different types of collagen. I take two different ones. One powered by Jarrow (a scoop every day in water) and pills that have type 3 for connective tissue. And the other supplements for support. PMR is a connective tissue problem but muscles go weak because connective tissue connects bones to muscle is my understanding.

[Robinsnest72 in reply to Healthysearch]

I will certainly read up on that. I know a lady who is taking collagen and it has really helped her but she was never diagnosed with PMR.

[schmuppy]

Can't type long but my numbness similar then muscles wasted. Long story short the steroids ruined my muscles so badly I can't walk and am now in an acute rehab (off steroids completely) trying to get strength back. Get off the steroids as quickly as you can with the help of an endocrinologist and monthly blood tests. You need to make sure your Arsenal's work or you will have an additional crisis and end up in a and e. PMR pain is nothing compared to needing someone to help you toilet.