Muscle tears and PMR and/or pred?

Posted by njtodctode @njtodctode, Sep 20, 2022

Hi. I was diagnosed May and since that time I have tried to learn how to manage this bleedin' disease. My rheumy told to take 20 mg. for I think it was 3 or 4 weeks. Then things improved so she said I could go to b 15 mg for 2 weeks and then down to 10. Well things did not go well. She has been booked so I am doing my own thing. I did 20 again then 16 for weeks but symptoms would just hang on. Then I tried 17.25., finally 3 days ago I went to 20 again. It's helping some but I don't think enough. Today ended up being a very painful day. I might go up a few more mgs.
So this is my question...last week I was doing something minor And moved my arm and felt seering pain in my bicep. I could hear and feel something rip. I saw stars. Then two days ago I leaned down to pick something off the floor and same thing happened in the back of my left thigh talk about painful!!..today I went out on the porch with dog and.damn I took a step and once again felt that same thigh muscle kind of rip again. I was so mad. Ever since I was sent on a fast.pred reduction I have been in so much pain and so exhausted that I am not doing much. So have any of you experienced this? I know pred is hard on your body...and so is PMR... Duh! But .... I take.magnesium everyday and have do so for.more than a year. I take a multi vitamin as well. So...any experience, ideas, treatments...pls let me know. Also anyone heard of MSM? And last...I am thinking of increasing fr 20 for a bit to see if I can get more than two decent hours in a day....not including my muscle rip days. Thanks everyone.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Hi @njtodctode, The tapering game with PMR can be the pits especially if you try to taper too fast. Sorry to hear you are struggling with managing the symptoms. In another discussion where we connected you mentioned you were going to try again at 20 mg to see how you felt. Did you already go back to 20 mg and then taper down again?

I'm wondering if the following discussion might be helpful to read through a few of the posts and see if you can make a connection that helps.
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

I've never tried MSM but others may have some experience. I did find this information that might provide some insight:

-- 8 Science-Backed Benefits of MSM Supplements:
https://www.healthline.com/nutrition/msm-supplements

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@johnbishop

Hi @njtodctode, The tapering game with PMR can be the pits especially if you try to taper too fast. Sorry to hear you are struggling with managing the symptoms. In another discussion where we connected you mentioned you were going to try again at 20 mg to see how you felt. Did you already go back to 20 mg and then taper down again?

I'm wondering if the following discussion might be helpful to read through a few of the posts and see if you can make a connection that helps.
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

I've never tried MSM but others may have some experience. I did find this information that might provide some insight:

-- 8 Science-Backed Benefits of MSM Supplements:
https://www.healthline.com/nutrition/msm-supplements

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Hi John...I told you I was crazy...lol
Yes
I started 20 Monday. So we will see. I just realized that when this all started in May and she put me on 20 I was already on 3 --
had been for years for sjogrens RA. So maybe I really need to go to 23. Anyway...the post was really more about the muscle tears. I gave the background to help with answers. Anyway just curious it is not fun
..my leg is not happy this am.
Thanks John for the links. As always I am grateful for your feedback and info.

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For sure you are reducing much too quickly. I did 1 mg per month.

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Boy, you are having a rough trip. As to MSM, I have had lots of experience- for myself and dogs and horses. (And they don't have the placebo effect.) I take about 3 grams a day, with juice. I just use the same stuff I give my horses but they package it for prople, too. They have not found a toxic dose for it so it seems safe. It has been shown to down regulate IL6 which is implicated in PMR so seems like a good idea to me. (But not a doctor so do your own research.) It is the first thing I give an older horse (or dog) that has arthritis and it helps them move better. So, give a look and maybe a chance. (BTW: My vet approves of it for the horses.)

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I am so sorry you are having these issues. I have not encountered this, but have had constant pain or pain reoccurring by the end of the day. I have taken 2.5mgs of pred one day and 25 mgs of diclofenac the next day. That appears to work for me better than pred every day.
I hoped it might help with side effects as well.
Diet appears to be a big thing also. I can only drink water. Coffee, even unsweetened, does not work for me. I am off white bread, red meat, as much sugar as possible, and low salt. I eat a lot of salmon and green veggies and fruits.
Wish I could offer help with the muscle issues.

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I have not had a feeling of muscles tearing but I have had sudden stabbing pains in my biceps and thigh. This leads me to a question which maybe I should have started another thread on. Someone, I think here and perhaps one of the moderators, posted a link to some new research on the cause of PMR. The research showed that it may be inflammation of the sheaths around the muscles rather than in tendons and bursae that leads to PMR. I should have saved the link but did not. If that's the case it could explain a tearing sensation and also many of the symptoms I have had that seem muscular, not in the joints.

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New research into the cause of PMR? I too, would be very interested in following that link.

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I don't know why but the private message system isn't working at the moment. I will try this approach. I hope you read this before Monday.

I'm hoping Actemra works for you. I believe you about not loving prednisone. I started Actemra on January 1st, 2019 because I liked the symbolism of starting over with something new.

I'm not saying you shouldn't take prednisone. Prednisone helped me get through some terrible days. There was something about prednisone that made me feel better when things were the worst. I needed to do something and taking prednisone was all I knew to do.

Prednisone worked really well for uveitis. I could take 60-100 mg and taper off again in a month or two.

It was just a combination of many things. I refer to trigeminal neuralgia (TN) as "pure evil." One of these days, I will be able to talk about TN without crying. TN earns its nickname. TN isn't called the "suicide disease" for nothing. The neurosurgeon who did my surgery for TN made a comment to me when he reviewed my medication list prior to surgery. He wondered what pain medications I took because people with TN usually had a list of pain medications a mile long. Prednisone worked the best of all those other pain medications I was given. Prednisone didn't work perfectly ... when those jolts of facial electricity got more frequent, I took as much prednisone as I dared to take and prayed.

Sometimes I think PMR was the answer to my prayers because after that I took prednisone on a daily basis. Things were somewhat better after PMR was diagnosed only because all of my problems was getting looked at. Until PMR happened, I listed my ophthalmologist as my primary care doctor because he was the only doctor I saw. He was treating uveitis every time it flared but wasn't totally aware of everything else that was happening.

Unfortunately, the longer I took prednisone, my list of doctors expanded exponentially. How many doctors does a person really need? I settled on three --- my primary care doctor and my rheumatologist . My ophthalmologist was always there for 30 years until he decided I needed a uveitis specialist. I thought he was a specialist!

I'm not an overly religious person but I'm praying Actemra works reasonably well for you and you can get off prednisone. I still have problems but I don't think Actemra is causing any of the problems. Actemra helped me to see the problems I have with more clarity without throwing more prednisone at everything.

Eventually, I hope to have a talk with God and everything will be explained. That is the way I look at everything now. In the meantime, I like being off prednisone.

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I think my PMR started with a hamstring tear in Dec. What? I have long hamstrings and that leg is strong! I took 5 weeks off exercise and when I restarted my hips started hurting, never any hip problems in my life. Then BOTH shoulders, so I knew what it was when I couldn't get out of bed. My R shoulder has been hot on and off months before the hamstring, but I think it's just crunchy with arthritis. On prednisone, 20, my shoulder is perfectly useful. So I think my PMR crept up on me over a year.
I have a new primary care doc, and my husband is a semi retired internist. I've been on 20 since Mar 15, and PCP wants me to taper to 15 this week.
It's not going to happen that fast, breaking a 5mg into quarters, down to 17 1/2, up at 1:30am today in pain. So I backtracked, added 1 1/4 back in and took the 6am 2 1/2 early. I had also added Plaquenil 400, and tried to reduce that suddenly too, but I'll go to every other day for a while. Moving split doses around to sleep better, but that didn't work as I woke up in pain at 1:30am today.
We are on our own with tapering. And everything else.
I'm doing sunlight with my clothes on to get Near Infrared, exercising, pickleball, cutting most carbs, eating simple raw and fresh foods. I cook. Nesting in a recliner, with everything I need right there.
Seeing my opthalmologist as I already had an unusual bleed on my retina last summer, worried about Gca and Plaquenil. Seeing an ortho for a wrist injury and hopefully xray my shoulder.
So self care is dominating my life. I'm 71.

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@sandmason

I think my PMR started with a hamstring tear in Dec. What? I have long hamstrings and that leg is strong! I took 5 weeks off exercise and when I restarted my hips started hurting, never any hip problems in my life. Then BOTH shoulders, so I knew what it was when I couldn't get out of bed. My R shoulder has been hot on and off months before the hamstring, but I think it's just crunchy with arthritis. On prednisone, 20, my shoulder is perfectly useful. So I think my PMR crept up on me over a year.
I have a new primary care doc, and my husband is a semi retired internist. I've been on 20 since Mar 15, and PCP wants me to taper to 15 this week.
It's not going to happen that fast, breaking a 5mg into quarters, down to 17 1/2, up at 1:30am today in pain. So I backtracked, added 1 1/4 back in and took the 6am 2 1/2 early. I had also added Plaquenil 400, and tried to reduce that suddenly too, but I'll go to every other day for a while. Moving split doses around to sleep better, but that didn't work as I woke up in pain at 1:30am today.
We are on our own with tapering. And everything else.
I'm doing sunlight with my clothes on to get Near Infrared, exercising, pickleball, cutting most carbs, eating simple raw and fresh foods. I cook. Nesting in a recliner, with everything I need right there.
Seeing my opthalmologist as I already had an unusual bleed on my retina last summer, worried about Gca and Plaquenil. Seeing an ortho for a wrist injury and hopefully xray my shoulder.
So self care is dominating my life. I'm 71.

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@sandmason, If you only have 5 mg prednisone tablets, you might want to see if you can get scripts for 2.5 and 1 mg tablets. The smaller dose tablets really helped with my taper.

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