PMR

[Stormy Kromer]

Well, I've seen two doctors, had 14 lab tests done, 2 MRI's and have an appt. with a neurologist.

I'm coming to the internet for the real answer to my problem.

Starting in June I hurt everywhere and ignored it for a couple months while taking care of my ailing mother. After she passed a couple days later I couldn't get out of bed. Hurt too much.

I drank a lot of water and tried to work it off. Didn't help. Over the counter pain medicine doesn't phase it. I went to a Dr's office and they think I have PMR. (thats a shortcut for the real name). Its a type of muscle inflamation. Anti-inflamatory pills aren't working, I see the Dr again in a week and they may beef it up to a steroid like prentizone.

Anyone here have any experience with it ? Suggestions and advice would be appreciated.

I am seeking medical care and will continue to. I have learned that hearing from people with similar problems is valuable too.

Thanks everyone. Don't take feeling good for granted.

 

[badatmath]

It looks like you should be going to a rheumatologist and that steroids offer some hope of relief https://rheumatology.org/patients/polymyalgia-rheumatica.

I have not ever heard of it before now I'm afraid. Hope it turns out to be easily controllable.

 

[Koolau]

Anything that comes on that quickly and has such profound effects sounds serious. It's frustrating that doctors have to play the game of tests and ruling things out to get to a definitive answer. Too often, it seems, once they arrive at an "answer" they don't know how to treat it. I hope that's not your case. Good luck and always consider a 2nd opinion.

 

[captain3d]

My very active mum in her 80s had something similar at the start of lock down. Suddenly everything ached and she could not do anything.

Lots of pain killers etc prescribed. Some theories out high iron. Nothing really fixed anything.

Finally she just stopped taking the meds and slowly returned to normal as life opened up again.

I think it was the sudden slow down of her normal activities

 

[eytonxav]

How is this diagnosed? Sounds similar to what was termed Fibromyalgia, a not well understood disorder.

 

[LateToFIRE]

Do auto-immune conditions run in your family?

Edit:

Also, are you having any muscle weakness, numbness in limbs, difficulty walking or maintaining balance, difficulty using hands, etc?

If yes to any of the above, I suspect the neurologist will be in the best position to diagnose.

 

[pacergal]

I do not have PMR or know anyone with it, but agree with Neurologist consult, and if they are leaning towards PMR, then a rheumatologist is your best bet.
So sorry you are experiencing this. It can be frightening to have symptoms and no confirmed diagnosis.

 

[Stormy Kromer]

How is this diagnosed? Sounds similar to what was termed Fibromyalgia, a not well understood disorder.

Physical examination mainly. The blood tests ruled out a lot of possibilities but showed EXTREMELY high levels of inflamation on a couple tests. The DR ordered MRI's, the results ruled out some more possibilities (found a benign brain tumor though, Dr. said it was nothing to worry about)

The PMR diagosis was narrowed down by ruling out other options. They don't want to prescribe the steroid medication til after our meeting on the 21st. I have a neurologist appt. in November.

Its a beast right now, but I've been told PMR can be treated successfully in about 96% of patients. I'll keep you posted.

 

[eytonxav]

Its a beast right now, but I've been told PMR can be treated successfully in about 96% of patients. I'll keep you posted.

Hope treatment gets you some relief. Chronic inflammation in itself can be quite debilitating.

 

[CaptTom]

A shot in the dark, but the symptoms sound vaguely similar to Lyme disease. I assume they ruled that out?

 

[Stormy Kromer]

A shot in the dark, but the symptoms sound vaguely similar to Lyme disease. I assume they ruled that out?

The blood check ruled that one out. It was high on the list though.

 

[flubber]

My mother had PMR. She concurrently had GCA (Giant Cell Arteritis) as well. They are frequently seen together. Both are serious and fall under a Rheumatologist's umbrella. That is who you should be seeing. I was her caregiver and have dealt with these issues on a daily basis.

A biopsy of the temporal artery should give you a diagnosis, or rule out PMR if that isn't it.

If it is PMR (Polymyalgia Rheumatica is its full name), prednisone is your friend. My mother began on a low dose at 15 mg but eventually required 60 mg to keep the symptoms at bay. Since such high doses of prednisone can lead to nasty side effects, as soon as she would stabilize, the dose would be lowered gradually as is commonly done with steroids.

Should you develop GCA as well, it can lead to blindness, as happened to my mother in spite of excellent medical care. Stroke (aneurysm) is also a possibility, which also happened to my mother and was the cause of her demise.

Here's a link to the Cleveland Clinic's information about both ailments. Perhaps you've already seen it but I thought it might be helpful for anyone who is interested in learning more about either or both of these issues.

https://my.clevelandclinic.org/heal...a-rheumatica-pmr-and-giant-cell-arteritis-gca

I sincerely hope that you don't have PMR but I'm very glad you're getting on with getting a diagnosis. Wishing you well and I hope you'll come back here and update us on the ultimate diagnosis.

 

[Stormy Kromer]

My mother had PMR. She concurrently had GCA (Giant Cell Arteritis) as well. They are frequently seen together. Both are serious and fall under a Rheumatologist's umbrella. That is who you should be seeing. I was her caregiver and have dealt with these issues on a daily basis.

A biopsy of the temporal artery should give you a diagnosis, or rule out PMR if that isn't it.

If it is PMR (Polymyalgia Rheumatica is its full name), prednisone is your friend. My mother began on a low dose at 15 mg but eventually required 60 mg to keep the symptoms at bay. Since such high doses of prednisone can lead to nasty side effects, as soon as she would stabilize, the dose would be lowered gradually as is commonly done with steroids.

Should you develop GCA as well, it can lead to blindness, as happened to my mother in spite of excellent medical care. Stroke (aneurysm) is also a possibility, which also happened to my mother and was the cause of her demise.

Here's a link to the Cleveland Clinic's information about both ailments. Perhaps you've already seen it but I thought it might be helpful for anyone who is interested in learning more about either or both of these issues.

https://my.clevelandclinic.org/heal...a-rheumatica-pmr-and-giant-cell-arteritis-gca

I sincerely hope that you don't have PMR but I'm very glad you're getting on with getting a diagnosis. Wishing you well and I hope you'll come back here and update us on the ultimate diagnosis.

Thanks, but its confirmed. I was relieved it wasn't a worse one such as ALS or MS or even more. Thanks for everyone's concern. I will fight it and keep you posted if I can help at all.

 

[Koolau]

Best wishes for a good treatment program with a doctor you trust. Keep the faith! We are pulling for you

 

[ivinsfan]

Thanks, but its confirmed. I was relieved it wasn't a worse one such as ALS or MS or even more. Thanks for everyone's concern. I will fight it and keep you posted if I can help at all.

Well the way you describe it I'm not sure I'd use the word confirmed

 

[flubber]

Thanks, but its confirmed. I was relieved it wasn't a worse one such as ALS or MS or even more. Thanks for everyone's concern. I will fight it and keep you posted if I can help at all.

Perhaps I missed something. I didn't realize that the diagnosis was confirmed. So you have had the definitive temporal artery biopsy?

I gathered they didn't want to begin steroid therapy until after your 8/21 appointment. That surprises me as time is somewhat of the essence with PMR. I'm also confused as to why you are seeing a neurologist for this as it's an autoimmune vasculitis problem.

In any case, I hope that your treatment goes well.

 

[Jenna]

Dr Derrick Lonsdale, Elliott Overton, Dr Constantini....High Dose Vitamin B1 for Parkinsons, MS, Autoimmune, FM

 

[Stormy Kromer]

Well the way you describe it I'm not sure I'd use the word confirmed

My internal medicine Dr. told me...".Stormy, based on our days of research, exams and blood tests and your multiple MRI's we have ruled out everything else. You have PMR." "We aren't treating you for anything else" 8/16/2023.

You maybe know this DR. at CCMC in Montevideo, MN. I believe him.

 

[Jerry1]

My internal medicine Dr. told me...".Stormy, based on our days of research and your multiple MRI's we have rule out everything else. You have PMR."

Then I would want the test to absolutely confirm it.

FWIW, I have a type of vasculitis and I felt better knowing with certainty what I had. They did a biopsy (not fun, especially with how I felt at the time) and confirmed the diagnosis. I've been on steroids for over a year now along with a couple infusions and a medication specific to my illness. The infusions and the medication allow them to reduce the steroid. I'm down to 4mg per day.

I wish you well on this journey. Like you, it helps to realize that it could be much worse ("ALS or MS"). We all have a journey and this is yours. Do your best.

 

[ivinsfan]

My internal medicine Dr. told me...".Stormy, based on our days of research, exams and blood tests and your multiple MRI's we have ruled out everything else. You have PMR." "We aren't treating you for anything else" 8/16/2023.

You maybe know this DR. at CCMC in Montevideo, MN. I believe him.

I'm a big fan of that system...they saved my DHs life...I just meant I'm not a fan of the last man standing diagnosis.

 

[Stormy Kromer]

I'm a big fan of that system...they saved my DHs life...I just meant I'm not a fan of the last man standing diagnosis.

I'm a fan too. Just wish they would do something sooner than wait for symptoms to get worse before they "confirm" their diagnosis when they have ruled out everything else.....They have told me they have ruled out everything else...PMR you've got it.

 

[ivinsfan]

I'm a fan too. Just wish they would do something sooner than wait for symptoms to get worse before they "confirm" their diagnosis when they have ruled out everything else.....They have told me they have ruled out everything else...PMR you've got it.

I understand and I'll pray for you to get some relief soon. It's hard when you farmer types don't feel well.

 

[Stormy Kromer]

Saw my internal medicine Dr on Monday. After another blood test and exam and he said "we'll begin treatment for PMR" I got a big shot and a prescription for a moderate doze of pretnizone. I noticed some improvement already. For the first time in weeks I feel like there's hope.

I waited too long to see the Dr. If you have symptoms more than a few days go in.

 

[Koolau]

Saw my internal medicine Dr on Monday. After another blood test and exam and he said "we'll begin treatment for PMR" I got a big shot and a prescription for a moderate doze of pretnizone. I noticed some improvement already. For the first time in weeks I feel like there's hope.

I waited too long to see the Dr. If you have symptoms more than a few days go in.

So glad you can now see some relief. Blessings on your treatments. Keep us posted. We care about you.

 

[pacergal]

Glad the prednisone is helping.
Keep us posted and know we all are pulling for better health for you.
Take Care.