PMR with normal labs and having severe thigh pain

Yes. everyone is different. PMR has a way of uncovering other hidden diseases. Length of time and dosage are important. The subject has been discussed a lot. If you participate on any other sites you will see comments all the time about a PMR flare. PMR does not have to be the big bad wolf. Its a much better autoimmune disease than say RA. Prednisone however is a big bad wolf. This site has plenty of experts into prednisone and adrenal insufficiency. Google that comment. Dadcue went 12 years on prednisone. The problem can become that the pain from AI can prevent you from ever getting off prednisone. Some can not get their adrenal system to restart.

Hello @lsm47 I was thinking about your post today while in the pool at the JCC. Given your spinal issues, have you ever done water-Physical Therapy or exercises in the pool ? Perhaps you should have another spinal MRI ?

I too had alarm bells go off when bilateral pains occurred , for me it was arms and wrists when I was at about 5 mg Prednisone. But CRP and ESR were not elevated and this particular sensation responded to Osteopathic manipulation!
I had a somewhat related thigh pain issue - and long story short - a sports medicine orthopedist from Boston's Childrens Hospital evaluated me with Ultrasound , and then I was treated with EPAT ( sonic wave therapy) !!

You said are on Acterma for a year now -what is the the follow up for that treatment ?- for are you officially in remission or at the least, spared from Gluccocorticoid use?

So over the last several months I have tapered to zero Prednisone and swimming and /pool PT has helped my leg and core strength. And I am assuming the EPAT has also helped.
Best of luck for your pain to go away ! - nyxygirl

Hi: My next appointment is in a couple of weeks. Hopefully I will know more. First of all, I am still on actemra. My pain level is still the same or worse. The good thing, is I am off prednisone. I wrote to the doctor about the pain especially in the am and he thought I should try gabapentin. I read about it and felt I do not want more problems. The side effects are totally scary. Before I get up in the morning I do bed exercises and put ice on my lower back. Happy to hear you are doing better. Take care.

I too have severe thigh pain in the a.m. it does get better in an hour or so of little movement. But the thing that helps greatly is physical therapy! I was never a fan of PT, but these sessions have taught me certain small tricks that keep my spine straight and pain free. I’m scheduled to have the final procedure for ablation n my lower spine, but I truly believe that the primary cause of all of the spine and leg issues I have were from PMR a year ago. I pray it gets better with a little time.

Update....8 mg still kept me stiff and in pain. My rheumatologist then instructed me to go on 15 mg. Yikes! While some of pain and stiffness gone in legs, I still have neck and hip issues. Had a follow-up endoscopy last week for ulcers an d gastro dr. now found fungus in my esophagus - most likely due to prednisone according to gastro dr. I'm thoroughly frustrated and disappointed at this point, as now another medication has been added to the list to deal with this new issue. I was so hopeful when I got down to 3.5 mg prednisone and now this bounce is causing more problems. Lifestyle, diet, and exercise have always been important to me, but I am the primary caregiver to my husband for over six years already and I know that brings a lot of stress to me each and every day. Started acupuncture two weeks ago and have fingers crossed that it proves fruitful in eliminating some of the stiffness. Anyone else experiencing a lack of relief even with higher dose of prednisone?

I have been off of prednisone for two years and I regularly experience some moderate pain in both thighs and my butt in the early morning -- sometimes waking up around 3:00am and feeling it. Movement helps it go away, but it has been a consistent experience for me with normal labs.

Interesting re: gabapentin !!
I am not a medical professional. But maybe someone can comment - A physiatrist who was also evaluating me for my thigh pain remarked that if it is nerve-related a short course of gabapentin might /should/ could confirm .

I have taken gabapentin in the past . But recent article in NYT is worth a look :
https://www.nytimes.com/2024/08/17/health/gabapentin-seniors-pain.html
Thanks for your kind words in reply !!

Have an MRI. I had been having thigh pain and MRI showed a hip labrum tear.

Gabapentin is for "nerve pain" but when you think about it, all senstions are transmitted by nerves to the brain. It is the brain that deciphers what the sensation is and where it is coming from.

I took gabapentin for trigeminal neuralgia which gave me the "sensation" that my face was electrified. I called it facial electrocution.
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344#:~:text=Trigeminal%20neuralgia%20(try%2DJEM%2D,trigger%20a%20jolt%20of%20pain.
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Gabapentin quieted down all my nerves in my body. I felt like I was becoming a zombie or the walking dead. I told my neurologist I felt like I was digging a deep hole for myself and I wasn't able to get out of the hole I was digging. I went to sleep one night and slept for 2 days. When I woke up, I was out of the hole. I didn't take gabapentin ever again after that nightmare.

I told the neurologist that Prednisone worked "reasonably well" for my electric shocks. The neurologist said trigeminal neuralgia wasn't treated with prednisone so I stopped going to the neurologist.

My primary care doctor was more compassionate. I once messaged him that the electric shocks were occurring once per minute and I was considering taking 100 mg of prednisone to quiet things down. I explained that I would quickly run out of prednisone if I took 100 mg for a "few days." My primary care doctor immediately called me back within minutes after he got my message. He only asked me if I was sure 100 mg daily would be enough. He agreed that one electric shock to my face every minute was too many.

The "sensation" of electricity was because the nerve impulses were being scrambled in an area at the base of my brain. My brain was unable to decipher what the sensation was so my brain interpreted the sensation as electricity. The sensation of the wind on my face would sometimes be interpreted as electricity. I wasn't really being electrocuted ... it was all in my head as they say!

Even a kiss could be electric!

Trigeminal neuralgia caused me unimaginable stress. I don't think all that stress was helping my PMR.

This gives me hope as I am now on 3 mg prednisone, changing by 1 mg per month, and have started having some pain in thighs and butt, waking up at same time as you. I think I can live with this and hope that nothing gets worst as I continue to lower my dose. I do not like the side effects of the prednisone on my skin and bones. (Basically I resent getting older and having to deal with things. But also happy I am getting older).