Author Topic: Update on Polymyalgia Rheumatica  (Read 174 times)

Carolina

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Update on Polymyalgia Rheumatica
« on: July 22, 2020, 04:18:34 AM »
Dearest Sjogren's Angels,

After 5 years of increasing pain, I was diagnosed with Polymyalgia Rheumatica.

I began treatment in late January of this year, started with 16 mg of Medrol, daily.  And the pain was gone!  Which verified the diagnosis.

The plan was to taper slowly, and if I was one of the lucky ones, the PR would be gone at the end of the taper.

Unfortunately the PR pain returns as soon as I go below 10 mg Medrol/day.  I'm working closely with my Rheumatologist in the process.

So I go back to 10 mg, and start the taper over again.  I've been doing this now for 6 months, and the Medrol is taking a toll on my body and my temperament.

My skin is breaking down with increasing huge red spots (Actinic Purpura) and the skin on my arms and legs is very thin and tears easily.  I am struggling to keep from gaining weight, but I cannot lose the 10-20 pounds more than I have been aiming for.  I did lose over 30 pounds before I started the Medrol, so just maintaining is a big plus!

In addition, l I am irritable and short tempered.  I easily become outraged by the stupidity, laziness, and failures of those around me.  I do my best to control expression of my anger, and I KNOW that there's no point in getting stressed over things I can't control. 

This irritability and anger aren't really part of my usual personality.  So I really think the Medrol is the cause.

I would like to completely taper the Medrol, endure the pain for a while, and then try the taper again.  My body needs a rest.  But the pain is pretty intense.  It wakes me up at 3 am, and I can't go back to sleep.  This has happened again today.

I'm at 8.5/mg Medrol a day now, and clearly I will have to either endure the pain and continue to taper the Medrol, or go back up.

It some times takes up to two years of this process to finally stop the PR from returning.  I know I can't stay on Medrol the way I'm going for the entire two years.  I need a break.

Just venting, sorry.

Regards, Elaine
Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Co-Q10-D3-Omega 3-Naltrexone-Omeprazole-

meirish

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Re: Update on Polymyalgia Rheumatica
« Reply #1 on: July 22, 2020, 07:04:37 PM »
Sorry to hear that you are having such a rough time. Is there any reason to purpose that would cause you to taper off the Medrol and add the Prednisone at the same time. I do't know if the prednisone would have less side effects.

Seems like it is hard to get old and to be ill at the sea time. Hard to keep the spirits up. I know I am much more of a loner than I used to be and get lonesome but at the same time visiting and dealing with lots of activity wears me out so bad. It is a rough place to be in that is for sure.

Keep us posted on how you are doing. We can't fix you (can't fix myself either) but we can listen to your issues and hopefully give some relief. Take care. Hugs meirish

Linda196

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Re: Update on Polymyalgia Rheumatica
« Reply #2 on: July 23, 2020, 06:23:43 AM »
I actually managed to develop PMR while on a maintenance daily dose of Prednisone of 7.5 mg. For the initial presentation, the Pred was bumped to 20 mg/day for 10 days then a gradual taper to the original maintenance, but not a one way taper, it was up and down several times.

Since that time (and I hesitate to tell you this, but that was more than 6 years ago), I continue to have flares, becoming less and less frequent, thankfully, Each flare is treated with a Pred bump to 20 until symptoms respond then 3 more days, then gradual taper to maintenance.

At least now, I recognize the flare symptoms more quickly and don't waste time wondering if it's any of the other possibilities (you know the drill, cold and flu, strain, arthritis, unnoticed injury, and so on). In my case it's a very specific pattern, thighs and outer hips, then upper arms and between the shoulders. If I let it progress to stiff neck and headache it makes it very difficult to resolve.

Sometimes people do react differently to different forms of steroid, so maybe Prednisone to replace Medrol might help, but higher doses would be required to allow for relative potency.
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Carolina

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Re: Update on Polymyalgia Rheumatica
« Reply #3 on: July 23, 2020, 08:47:59 AM »
Thanks Irish and Linda,

My Rheumatologist did mention that sometimes PMR continues to be troublesome in flares no matter how long one has been treating it.

She chose Medrol, I think, because I have been on a regular dose of 2 mg/day to control reaction to IVIG since 2013!  And to think my Immunologist freaks out at 2 mg/day! 

Linda, I don't have the pain in my hips and thighs part, just intense pain in neck, shoulders and triceps.

My Rheumatologist told me that sometimes it is the husband who brings his wife to the doctor because she has trouble dressing herself, the pain is so disabling.

It's good to know that now that I recognize what is happening, I can seek treatment and relief at the first sign.  I had PMR for FIVE YEARS!  Because I have degenerative disk disease I thought the neck pain, which is where PMR starts for me, was due to that condition.

I even sought possible neck surgery from my orthopedist, who ruled out surgery.  My neck wasn't 'bad enough' for surgery. 

It was my Immunologist who diagnosed PMR a year ago.  I thought i was suffering from chronic inflammatory disease, but I had none of the blood factors for CID.

Thank god for smart doctors, who actually pay attention.  A rarity, I know.

Thanks again for sharing and support.

Elaine
Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Co-Q10-D3-Omega 3-Naltrexone-Omeprazole-

jazzlover

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Re: Update on Polymyalgia Rheumatica
« Reply #4 on: July 24, 2020, 03:04:19 PM »
Is there a certain test that determines the diagnosis, or is it a clinical diagnosis.

I have a friend who is struggling with severe neck pain. She has osteoarthritis.
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Linda196

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Re: Update on Polymyalgia Rheumatica
« Reply #5 on: July 25, 2020, 03:04:16 AM »
Jazzlover, the only lab test abnormality is often elevated inflammatory markers like SED rate (ESR) or CPR, but that isn't necessarily positive, or, in my case where it runs minimum 3 times normal range, can't be determinate.

Diagnosis usually depends on a constellation of symptoms including pain in specific areas, usually referred to as "shoulder and pelvic girdles).

Imaging tests like MRI can be used to rule out other conditions that may cause the pain.
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jazzlover

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Re: Update on Polymyalgia Rheumatica
« Reply #6 on: July 25, 2020, 03:38:10 PM »
OK, thanks so much!
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease