Polymyalgia rheumatica

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can’t take pain meds, but do drink wine to ease pain, although I’m told no alcohol w prednisone. Anything you can share as far as info

@noahs

Hi John. Remember me … I’m the one with autoimmune attacking my lungs. Also bronchiectasis and interstitial pneumonitis … that’s why i keenly follow this bronchiectasis thread. I’m tapering my steroids now. Have been on 15 mg since June 2018. Last March
my rheumatologist
tried tapering me and we reached 10 mg But I had a bad flare up and was back to 15
Mg of prednisone . I was very sick
For six weeks and almost got
Hospitalized. Last May 2 I started tapering again and I followed one of the comments here to just do tapering 1 mg
At a time. So I’m doing that plus
My doctors advise to make TThSatSun as my tapering days and MWF I’m still
On 15mg. Plus he increased my cellcept to 3 tabs a day. In addition I was placed by my pulmonologist on prophylactic antibiotic . Meaning I take Zythromax 250 mg MWF. Hoping to stem off lung infection. It’s May 7… my low grade fever from autoimmune comes again but resolves itself. I need more rescue asthma inhalers .
But all in all, I hope things will work out well and I can go down 1 mg again after two weeks. I am “assured” when I read the stories of others having difficulty in tapering steroids but manage to get through it. My doctors emphasized that really I should start tapering the steroids fearing the side effect they can do to my liver and kidneys. So I am also psyching myself that I will succeed in. This tapering business without too much negative health issues. The goal is to get me to zero or max 5mg
Prednisone a day. Just wanted to share this.

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Good to hear from you @noahs. Sounds like you have a good plan for tapering off prednisone once your other health issues better. Thanks for sharing!

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new to this PMR , very informative

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my arms ache , my thighs , butt and stiff neck, hard to get moving in the AM . have taken tons of advil, have doc appt in two weeks

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@sidsell

my arms ache , my thighs , butt and stiff neck, hard to get moving in the AM . have taken tons of advil, have doc appt in two weeks

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Hello @sidsell, welcome to Connect. I have had 2 occurrences of PMR but it is currently in remission. I still have some problems getting started in the morning but I'm sure a lot of it is age related in my case.

Is your upcoming doctor appointment with a rheumatologist? Hope you are able to update if you are diagnosed with polymyalgia rheumatica (PMR). There is a lot experience that members can share with you.

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Hello, Sidsell. Welcome to this list. Before I was diagnosed with PMR on 8/24/18 I was having the same symptoms as you. And I was taking the maximum dose of Ibuprofen and Tylenol alternately. I also used CBD for about a week. None of these medications did much to relieve the pain. The sed rate test was within normal limits about a month before 8/24/18 and I was having all of the symptoms. The second set rate test was at 44 and clearly indicated inflammation. If your doctor checks your blood sample and it is found to be normal, I would suggest that you ask for a short trial of prednisone to help diagnose your condition.

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@sidsell

my arms ache , my thighs , butt and stiff neck, hard to get moving in the AM . have taken tons of advil, have doc appt in two weeks

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I had the same symptoms you are having, and I was finally diagnosed with polymyalgia rheumatica which is an autoimmune disease. It took three months and I saw five different doctors, four of whom were specialists, before a diagnosis was made. At that point I could hardly walk and could hardly dress myself.

When the initial diagnosis was made, my inflammation markers were quite high. Prednisone was a miracle drug in that the relief from pain was immediate and magical. My inflammation markers returned to normal quickly. However . . . as the dosage of prednisone was decreased, the muscle pain began to return. My doctor insisted that the pain was not caused by PMR because the markers for inflammation were normal. It did no good for me to keep repeating that there was a direct correlation between the decrease in dosage and the escalating pain.

After a year of fighting this battle, I got an appointment at the Mayo Clinic in Jacksonville, FL. (It was during the winter, and I did not want to deal with cold weather.) I learned from the rheumatologist at that Mayo Clinic that about 30% of patients diagnosed with PMR do not go into remission. Unfortunately, to date, I am one of those individuals. I also learned that about 10% of patients diagnosed with PMR will NOT have elevated markers for inflammation. Unfortunately, I also fall into that category as well. My dosage of prednisone was increased, and the pain again disappeared. I am currently on 11 MGS of prednisone and am decreasing it by 1 MG per month. My hope is that I will go into remission. Time will tell.

I can tell you that if it is PMR, nothing other than prednisone will control your pain. I have been most fortunate that my excellent PCP was grateful for the information provided by Mayo, and my PCP is supervising my dosage of prednisone as outlined by Mayo.

Best wishes to you as you pursue a solution to your health problem.

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@ambershe

Hi just wondering with taking prednisone is it common to get blurred eyesight and sweating more than normal, wondering if that is a common side effect?

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It has been for me. I consulted a rheumatologist at the Mayo Clinic in Jacksonville, FL. She told me that I should make an appointment with my ophthalmologist when I returned home and that he should regularly check my eyes. She also stressed that I was to quickly contact my ophthalmologist if I had changes in vision.

Within six months after beginning prednisone therapy, I required cataract surgery. I have had vision problems ever since beginning prednisone therapy. Currently I am sometimes experiencing double vision, and my visual acuity is like a flea. I have had to have lens changes as often as every three months. Needless to say, I have resorted to seeking out Success Vision.

Sweating has been a serious issue with me. About three times a day (especially at least once at night) I sweat from head to toe. I can feel the sweat on my scalp. It is caused by prednisone.

You might Google "side effects of prednisone." I did. I learned a lot.

Prednisone is Dr. Jekyl and Mr. Hyde. It miraculously relieves the pain of PMR and restores mobility, but its side effects are horrible.

Good luck to you as you deal with this disease.

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@lindapc

@johnbishop – I was interested in your comment John regarding when you went off the meds that you still had some sort of stiffness. It will help to know that I may not be completely pain free and able to stay off the meds. But, in saying that I have made my decision once off that unless I get to a state where it really affects my life then I would rather put up with the stiffness and stay off prednisone. I keep giving my body positive affirmations that this condition will leave me and I will be rid of it. Hopefully my body listens to me. 🙂

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I love your attitude. I am adopting it.

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@rachelp

It has been for me. I consulted a rheumatologist at the Mayo Clinic in Jacksonville, FL. She told me that I should make an appointment with my ophthalmologist when I returned home and that he should regularly check my eyes. She also stressed that I was to quickly contact my ophthalmologist if I had changes in vision.

Within six months after beginning prednisone therapy, I required cataract surgery. I have had vision problems ever since beginning prednisone therapy. Currently I am sometimes experiencing double vision, and my visual acuity is like a flea. I have had to have lens changes as often as every three months. Needless to say, I have resorted to seeking out Success Vision.

Sweating has been a serious issue with me. About three times a day (especially at least once at night) I sweat from head to toe. I can feel the sweat on my scalp. It is caused by prednisone.

You might Google "side effects of prednisone." I did. I learned a lot.

Prednisone is Dr. Jekyl and Mr. Hyde. It miraculously relieves the pain of PMR and restores mobility, but its side effects are horrible.

Good luck to you as you deal with this disease.

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thank you for your advice , my appointment is a week from today (with a rheumatologist) (very hard to get ) this pain is difficult to deal with , it came on suddenly, Im thinking its because of much stress.

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@sidsell1

thank you for your advice , my appointment is a week from today (with a rheumatologist) (very hard to get ) this pain is difficult to deal with , it came on suddenly, Im thinking its because of much stress.

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Hello @sidsell my name is Beryl as you have seen you are not on your own with PMR although you feel like you are the only one in the world and nobody believes you that you are in such pain even though you can't walk and you feel that they think you are putting it all on …..I know been through the hoop with it …..but talking to the people that are and have suffered can give you the confidence you need to carry on……
You have an appointment I believe at the Mayo Clinic where you will be helped and looked after…….the very best of luck with your recovery …….Beryl

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@rachelp

It has been for me. I consulted a rheumatologist at the Mayo Clinic in Jacksonville, FL. She told me that I should make an appointment with my ophthalmologist when I returned home and that he should regularly check my eyes. She also stressed that I was to quickly contact my ophthalmologist if I had changes in vision.

Within six months after beginning prednisone therapy, I required cataract surgery. I have had vision problems ever since beginning prednisone therapy. Currently I am sometimes experiencing double vision, and my visual acuity is like a flea. I have had to have lens changes as often as every three months. Needless to say, I have resorted to seeking out Success Vision.

Sweating has been a serious issue with me. About three times a day (especially at least once at night) I sweat from head to toe. I can feel the sweat on my scalp. It is caused by prednisone.

You might Google "side effects of prednisone." I did. I learned a lot.

Prednisone is Dr. Jekyl and Mr. Hyde. It miraculously relieves the pain of PMR and restores mobility, but its side effects are horrible.

Good luck to you as you deal with this disease.

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@rachelp The trouble prednisone causes! Don’t I know! I, too, had vision changes which meant new glasses—not cheap. I have been seeing an ophthalmologist because of another vision prob so he watches out for cataracts. As for sweating problems, I had those, also. I get so warm and uncomfortable, but never actually sweat. I barely used a blanket this winter! Night sweats went away after awhile, thank heavens. I’ll be glad when I can taper off!

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Hello everyone. My name is Barry and I’m 67. I was diagnosed approx 4 years ago. Same onset as everyone else; an incredible aging overnight. This vibrant athlete went to old man in milliseconds. Anyway just like everyone else 20 mg of the the prednisone and I was my old self again. Miracle!
Then the bad news. I am hooked. I got down to 2.5 mg and crashed. I always crash below 3. Now back up to 5 today. I too was told to go on methotrexate and refused. Anyone get good results ? Cured ? Or is the pill worse than the disease. Any supplements
Help ? I don’t mean placebo but really help? It’s very discouraging because you think you’re getting close to the end. Sed rate is good but doesn’t mean anything. Still have PMR with good sed rate. I haven’t heard from one person on this site that there is hope. Only failure. Can anyone give us any hope to this terrible disease. I now have my fingers deforming and swelling. They hurt too. Some days it’s my legs, some days my neck. Always my fingers. Somebody tell me I’m not going down the drain. Thanks

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@barry51

Hello everyone. My name is Barry and I’m 67. I was diagnosed approx 4 years ago. Same onset as everyone else; an incredible aging overnight. This vibrant athlete went to old man in milliseconds. Anyway just like everyone else 20 mg of the the prednisone and I was my old self again. Miracle!
Then the bad news. I am hooked. I got down to 2.5 mg and crashed. I always crash below 3. Now back up to 5 today. I too was told to go on methotrexate and refused. Anyone get good results ? Cured ? Or is the pill worse than the disease. Any supplements
Help ? I don’t mean placebo but really help? It’s very discouraging because you think you’re getting close to the end. Sed rate is good but doesn’t mean anything. Still have PMR with good sed rate. I haven’t heard from one person on this site that there is hope. Only failure. Can anyone give us any hope to this terrible disease. I now have my fingers deforming and swelling. They hurt too. Some days it’s my legs, some days my neck. Always my fingers. Somebody tell me I’m not going down the drain. Thanks

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Hi, @barry51 I’m sorry to hear about your autoimmune disease. Sure puts a kink in getting older! I had so many plans, now I’m just looking at modifying them. I’ve told myself that this is the new me and my new reality. I have CLIPPERS disease which affected everything. I don’t have pain, but… I would suggest that you take the methotrexate as recommended by your doctors. Several people with my disease use it and they’re doing OK. I use rituximab twice a year and hope to taper off prednisone. I know that this will be a lifelong condition I have 😪 and rituxan is helping! Long-term prednisone has its own problems, so have a good discussion with your doctor about methotrexate. I wish you the best. Becky

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@barry51

Hello everyone. My name is Barry and I’m 67. I was diagnosed approx 4 years ago. Same onset as everyone else; an incredible aging overnight. This vibrant athlete went to old man in milliseconds. Anyway just like everyone else 20 mg of the the prednisone and I was my old self again. Miracle!
Then the bad news. I am hooked. I got down to 2.5 mg and crashed. I always crash below 3. Now back up to 5 today. I too was told to go on methotrexate and refused. Anyone get good results ? Cured ? Or is the pill worse than the disease. Any supplements
Help ? I don’t mean placebo but really help? It’s very discouraging because you think you’re getting close to the end. Sed rate is good but doesn’t mean anything. Still have PMR with good sed rate. I haven’t heard from one person on this site that there is hope. Only failure. Can anyone give us any hope to this terrible disease. I now have my fingers deforming and swelling. They hurt too. Some days it’s my legs, some days my neck. Always my fingers. Somebody tell me I’m not going down the drain. Thanks

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Hi Barry
Mine started 2 years ago the same way. I was the most active woman i knew…travelling solo to India and Kenya…had my own business..building rock walls and gardens..etc etc. Then such a sudden screatching halt! The pain from head to toe, debilitating fatigue, i couldnt even bend over. 20 mg of prednisone and voila! I was back to myslf. I have been trying to reduce ever since and am now at 7mg. Today i am in pain but will take a T3 and that will clear up the day without upping the pred. I dont know that i will ever get completely off it, but i take comfort in knowing the side effects under about 9mg are negligible. I tòo have pain in my fingers and cant wear rings anymore because of the swelling. But
…..i give thanks everyday that it is not worse…and that it is not life threatening. Good luck with your reduction! I hope one day to be off it too!

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Hi Barry @barry51, welcome to Connect! I can really relate to the feeling of incredible aging overnight. Except in my case I finally found the old guy. I've had 2 occurrences of PMR which is currently in remission. The first them it took me three years to taper off and the second time 1-1/2 years to get off. Don't be discouraged. You mentioned getting down to 2.5 mg before crashing. Is it just a little more pain or is it the full blown aches and pain that come back?

When I was tapering the first time I was stuck at 1/2 mg, going back and forth between 1 mg and 1/2 mg for about six months before I was finally able to stop taking prednisone and only have some minor aches. The only advice I can give to anyone who is diagnosed with PMR is don't push yourself to do stuff that you used to do. You need to rest, accept your limitations, and look after yourself. I do think cleaning up one's diet and eating healthier makes a difference but is not the total answer. Here's an article that may be helpful.

What to eat if you have polymyalgia rheumatica
https://www.medicalnewstoday.com/articles/321683.php

Hoping some other PMR warriors will jump in and offer some tips on how to deal with what I call Mr. Nasty. Here is another discussion you might want to join and meet others with PMR.

> Groups > Autoimmune Diseases > PMR Anyone?
https://connect.mayoclinic.org/discussion/pmr-anyone/

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