Author Topic: Polymyalgia Rheumatica: really getting me down.  (Read 222 times)

Carolina

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Polymyalgia Rheumatica: really getting me down.
« on: October 26, 2019, 06:42:20 AM »
Dear Sjogren's Angels,

As you may recall, my immunologist diagnosed PR at my last appointment on September 11.   I had 'self treated' the pain, fatigue and depression with additional Medrol (Methylprednisolone), 4 mg/day.

https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/symptoms-causes/syc-20376539

1) She put me on an extended Medrol taper, which ended earlier this week. She hates for me to take Medrol because she knows the dangers of steroids.  I do, too, but I'm 77 and miserable!
 
2) Referred me to a Rheumatologist because she (My immunologist) doesn't treat PR.  PR is a Rheumatological not an Immunological condition. Sigh.

The FIRST appointment I could get with the new Rheumatologist is January 21!

The taper is over and I am truly miserable.  Wake up in the middle of the night with intense neck, shoulder upper and lower arm pain: soft tissue throbbing.

I began taking 'extra Medrol', only 2 mg in the middle of the night.

The TREATMENT for PR is doses of 20 mg of Prednisone, on a slow taper.  Once the taper ends if the PR is still present, the taper starts again.  This can take up to a year, but should 'end' the PR.

If the PR doesn't remit after a year of steroid tapers, methotrexate is the next possible treatment.

I am just moaning to you guys because 1) I'm miserable  2) I hate this wait  3) I do NOT WANT TO MEET A NEW DOCTOR! 

I'm too old, too complicated and it's just too late in the game to start over 'explaining' myself.

I understand why my Immunologist won't treat PR, it's not in her 'area'.  But I'm not sure how I can bear to wait until January 21.

I have to tell my Immunologist that I'm self treating again, at only 2 mg a day.

I can do this because she gives me a supply to use for 'flares'.  My Immune system makes me CRAZY.

Grrrrr, Elaine
« Last Edit: October 26, 2019, 06:44:56 AM by Carolina »
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araminta

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Re: Polymyalgia Rheumatica: really getting me down.
« Reply #1 on: October 26, 2019, 07:11:28 AM »
I'm so sorry you're going through all this, and yes January does seem quite a long way off.   I suggest phoning the rheumatologist's office, explaining how you feel, and asking them to let you know if they get any cancellations before then.

I don't know enough about PR to make any useful suggestions to keep you comfortable, maybe others here will have some ideas.

Keeping you in my thoughts and hoping the pain starts to improve.
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Linda196

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Re: Polymyalgia Rheumatica: really getting me down.
« Reply #2 on: October 27, 2019, 02:26:32 AM »
Feel free to vent! If anyone is going to understand, it's the great folks who make up this community!

I fully empathize , I was DXd several years ago, and by the time i got in to my doc (only 3 day wait but I was getting either desperate or impatient) I had already started the first round of 20 MG Prednisone daily (I'm on forever steroids so they were here) with a plan for slow weans and contingencies for relapse. He approved all of it, and wrote an new script to cover the increased use, and things settled pretty well, dealing with flares as they came up, and waiting out what I expected to be 18 months to 2 years until it burned out. I don't like telling you this, but it still flares, rarely, and I still go to the burst and taper. He actually told me he'd been waiting for me to come in with those complaints, because he fully expected my various AIs to cause PMR at some point.

One thing I found was that if I pampered the involved joints, especially the shoulder and neck area, they became stiff to the point of immobility, so I made a point of exercising those areas more frequently, if less strenuously, while they were flaring.

Since I was already on Methotrexate and Plaquenil when it started, I'm not sure there actually is a next step, rheumy didn't seem to think there was much research into biologicals to treat PMR, and he's usually pretty much up on new things.
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Carolina

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Re: Polymyalgia Rheumatica: really getting me down.
« Reply #3 on: October 27, 2019, 07:23:19 AM »
Thanks to ALL of you who have supported me and provided great ideas!

Araminta:  I have called and called the Rheumatologist's office: always 'voice mail', NEVER a call back, the one time I talked to a 'person' I got cut off!

Not a very encouraging start, and I'm in so much pain, fatigue, etc. this is all so much more annoying.

Linda:Ouch, the way you've described the progression of your PR (long treatment, return periodically) is rather what I expect.

I have severe degenerative disc disease in my neck, and both shoulders are at the point of recommended artificial joint surgery.  Of course I don't want joint replacement surgery and am waiting until the PR is treated to even consider that surgery.  I would do knee joint replacement first.

So, I can't really 'do' much direct exercise of my neck and shoulders.  I do understand that PR would cause 'pampering'.  When the PR got to the point that the muscles in my upper arms were in pain, I thought it was over exercise, but it's just the PR.  It is still hard to exercise my upper body, due to severe OA.

i must go back to using the arm part of NuStep exercise, because my upper arm pain isn't really the result of over exercise.

The fact that both knees and both shoulders are now at point of needing joint replacement really adds to my stress.

I also take Low Dose Naltrexone for pain, since I can't take  NSAIDS, OPIOIDS, and my Immunologist refuses to allow regular higher doses of Medrol. I'm not sure how effective the LDN truly is, at this point.  But it can't hurt!

https://www.ncbi.nlm.nih.gov/pubmed/30821677

Regards, Elaine

 
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susanep

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Re: Polymyalgia Rheumatica: really getting me down.
« Reply #4 on: October 28, 2019, 11:42:17 PM »
Elaine,
I am so sorry to hear you are in so much pain. You are in my prayers. All the tissue pain along with the pain in joints and other bones is a lot for anyone. I hope someone will give you something more for pain.

susanep :(
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Kathy57

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Re: Polymyalgia Rheumatica: really getting me down.
« Reply #5 on: November 05, 2019, 10:19:37 AM »
Elaine

I hope you are feeling better and sorry to hear about your suffering.  I remember having to wait 3 months before I could get into see my Rheumatologist for the first time.  It was awful!  I finally got in on a last minute cancellation on someone else!

Hopefully you can get in sooner!  Keep calling them!
Kathy
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irish

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Re: Polymyalgia Rheumatica: really getting me down.
« Reply #6 on: November 05, 2019, 07:43:04 PM »
Elaine, Sorry to hear that you are suffering so much. The only positive thing I can add at this point is that I am really glad that you got moved into your new abode when you did. Mentally it is great not to have to worry so much about keeping up with the chores when living in a house. Even having to get on the phone and call someone to do the chores is discouraging. We all keep some thoughts in our heads of the "young me".

I hope that your illness will sort of burn our and give you a reprieve. Hope your hubby is doing well. Irish




ohiolady

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Re: Polymyalgia Rheumatica: really getting me down.
« Reply #7 on: November 07, 2019, 07:18:08 AM »
Elaine, if you feel better with a low dose of medrol, why won?t they just let you take it? My daughter is only 40, with lupus and her rheumatologist wanted her to take 5mg long term. I strongly urged her not to because of the difficulty in weaning. But, at your age, if it brings you relief, why not? I am sorry you are suffering so.

Anna
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