Tremors

Bones, joints and muscles
1

Hello Community

Over last week have developed significant tremors.and muscle weakness 

Had cpk level done and emg which thankfully did not show steroid myopathy which was the thought, at this time but there was muscle

fatique and dont want that to progress to myopathy

Apparently tremors are a side effect of high dose steroids at the doses i have been on , and neurologist , and rheum are both trying to get me down at the very least to 10

I am at twenty down from the 30  , 25. the past month.

Also this is week 5 on metho, that we just increased from 10 to 15

Prob is all of a sudden the miracle pred was not relieving shoulder blade pain  hip  or hands  anymore. Felt same on thirty as do on 20, 

so  contention is why stay at high dose ?  And I agree

Can you get immune  to pred? 

Doc did a thoracic Mri and it did show some narrowing in the thoracic area as well as a bulge in the lumbar.

Backproblems are not new to me, had a cervical fusion with great results in 2014 

She wants me to go to physical therapy to slowly recondition muscles

and work on spine . 

I now wonder since my markers were never high, was this a spine issue all along?

And how much harm the meds may have done, since last march

where i have been hovering at 20 mg, going higher as well as lower.

I think i will tough out the pain, hopefully wean off the steroids,get off the metho  and have to resort.thru this all  Its not easy but I am at point where are think the meds are causing more issues than the disease

If i had relief at doses lower then 10mg would stay with it, but i cant get there. Hoping metho will kick in and but still need to respect adrenals and reduce slowly.

Not sure why fatigue remainsis so overwhelming though, thats not back issue 

So at a crosswords in a way, but all seems to be going wrong direction with these meds, , so we will see

Thanks for the outlet as always 

Wish all well

gina

 

2

"Not sure why fatigue remainsis so overwhelming though"

Probably because whatever it is in the way of autoimmune disorder that you have it isn't PMR - but I'll bet you have another disorder. Whenever the patient needs to go up to 30mg to manage their symptoms - questions should be asked as to whether it REALLY is PMR.

You don't have to worry about adrenal function and slow reduction until about 10mg and below - you can reduce fairly speedily down to there. You may get steroid withdrawal pains but that is discomfort, which can be very unpleasant - but it is not a lack of adrenal function so not risky.

Your back pain MIGHT be due to myofascial pain syndrome - mine makes my shoulder blades sore and tingle. But PMR is not the disease - it is the name given to the set of symptoms and they have a lot of different causes.

3

Thank you Eileen

I totally agree

I do not think i have pmr, after close to a year, of high dose pred, and I  think my rheumi agrees.

I think her thoughts on physical therapy are right on. And will discuss and research myofascial  syndrome

Today after tough three days of metho side effects , I am pain free at least for now.

Maybe its the metho kicking in, after 6 weeks.But , 

I am going to discontinue the metho, after raising it this weekend, and experiencing shortness of breath and feeling miserable, I am done with it. It scares me

Time to step back and figure this out.

I think I am an example of medication causing  negative health issues

Thank you for all your support. be well 

gina