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

@sammiesarah

Hi:I am a 53 year old female , diagnosed with PMR when I was 51. We are both very young to have PMR from what they tell me. Stress can play a part in PMR, but I think genetics and environment are equally blamed. I have been tapering for the last two years on prednisone. Be very cautious to not come down too fast. It can really set you back on progress. I hope you have better luck with all of this than I have. It has been a tough 2 years but from what the doctors tell mew I have a very stubborn case of PMR.

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Hi, I wondered if we were considered young to have PMR. I was told it can start when you hit 50. Mine started 8 months ago, and I am 52 yrs old. I agree that stress will play a big part in this. I just got back from a week long vacation to Mexico and a day before I left lowered the prednisone to 5.5mg. I had no issues at all lowering the meds, which makes me think that having no work stress etc is what caused a lot of this in the first place. I am wondering now if I should lower the prednisone again or if it is too fast, as last time I got done to 4.5mg but was in a fair amount of pain.

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@ambershe and @sammiesarah – my first onset of PMR happened when I was 64. Here's some information from the linked article below.

"Polymyalgia rheumatica is seen mainly in people of north European ancestry, although it can occur in any ethnic group. It is almost never seen in people under the age of 50, and its prevalence increases with increasing age. The average age of onset is just over 70, and 75% of patients are women. The incidence of the disease in patients over 50 is about 100 per 100 000."

National Institutes of Health – Polymyalgia rheumatica
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2287267/

I've had 2 onsets of PMR which is currently in remission. What I've learned about tapering off of prednisone is that each of us are different in how we are affected and tapering slow worked best for me. The first occurrence took me 3 years to taper off. The last six months of those 3 years was going between 1 mg and 1/2 mg dosage. The second time around I was able to taper off more quickly – 1 and 1/2 years but the last six months or so was going from 5 mg to 2-1/2 mg to 1 mg and then off. I would work with your rheumatologist or doctor on a tapering schedule that works for you.

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@ambershe

Hi, I wondered if we were considered young to have PMR. I was told it can start when you hit 50. Mine started 8 months ago, and I am 52 yrs old. I agree that stress will play a big part in this. I just got back from a week long vacation to Mexico and a day before I left lowered the prednisone to 5.5mg. I had no issues at all lowering the meds, which makes me think that having no work stress etc is what caused a lot of this in the first place. I am wondering now if I should lower the prednisone again or if it is too fast, as last time I got done to 4.5mg but was in a fair amount of pain.

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I think early onset may be more common than is reported but is misdiagnosed as the more common pattern is 70+. I am 73 and recently dx’ed. Going through medical history with my med team, it is obvious I had a much earlier onset.

IMHO, nothing is gained from a quick reduction in dose that 2 weeks later still leaves you in pain. You have to adjust doses to your every day life, everyday stress and all.

For me, I journal daily in an app that allows me to track exercise, nutrition, rx dosing and notes on pain level, stress or anything else noteworthy.

Doctors rely on data points to guide decision making.

I found this article helpful:
https://www.practicalpainmanagement.com/amp/16020

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@johnbishop

@ambershe and @sammiesarah – my first onset of PMR happened when I was 64. Here's some information from the linked article below.

"Polymyalgia rheumatica is seen mainly in people of north European ancestry, although it can occur in any ethnic group. It is almost never seen in people under the age of 50, and its prevalence increases with increasing age. The average age of onset is just over 70, and 75% of patients are women. The incidence of the disease in patients over 50 is about 100 per 100 000."

National Institutes of Health – Polymyalgia rheumatica
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2287267/

I've had 2 onsets of PMR which is currently in remission. What I've learned about tapering off of prednisone is that each of us are different in how we are affected and tapering slow worked best for me. The first occurrence took me 3 years to taper off. The last six months of those 3 years was going between 1 mg and 1/2 mg dosage. The second time around I was able to taper off more quickly – 1 and 1/2 years but the last six months or so was going from 5 mg to 2-1/2 mg to 1 mg and then off. I would work with your rheumatologist or doctor on a tapering schedule that works for you.

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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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@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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I take drops for elevated eye pressure, and do notice that vision is worse while taking prednisone. I don't know whether my occasional sweating is caused by medicine or just too many bed clothes. 🙂

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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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Hello @ambershe my name is @beryl …..I think there could be more than one reason for your eyes and sweating it would be a good idea to mention these things to your Rheumatolgist ….good luck with your recovery……Beryl

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@ambershe Welcome to this wonderful group we aren't Dr,s but help where we can with what helps us I use for drugs http://www.drugs.com they are pretty good with the meds but you should talk with your rheumatologist tell him your symptoms.

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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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Hi @ambershe, I never noticed any eyesight side effects from the 2 occurrences of PMR that I have had but that is one of the side effects listed. Have you discussed this with your rheumatologist or doctor?

Prednisone (Oral Route)
https://www.mayoclinic.org/drugs-supplements/prednisone-oral-route/side-effects/drg-20075269?p=1

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@johnbishop

@ambershe and @sammiesarah – my first onset of PMR happened when I was 64. Here's some information from the linked article below.

"Polymyalgia rheumatica is seen mainly in people of north European ancestry, although it can occur in any ethnic group. It is almost never seen in people under the age of 50, and its prevalence increases with increasing age. The average age of onset is just over 70, and 75% of patients are women. The incidence of the disease in patients over 50 is about 100 per 100 000."

National Institutes of Health – Polymyalgia rheumatica
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2287267/

I've had 2 onsets of PMR which is currently in remission. What I've learned about tapering off of prednisone is that each of us are different in how we are affected and tapering slow worked best for me. The first occurrence took me 3 years to taper off. The last six months of those 3 years was going between 1 mg and 1/2 mg dosage. The second time around I was able to taper off more quickly – 1 and 1/2 years but the last six months or so was going from 5 mg to 2-1/2 mg to 1 mg and then off. I would work with your rheumatologist or doctor on a tapering schedule that works for you.

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I have PMR and have had difficulty tapering down to 5 mg of Prednisone. My Rheumatologist recently added Meloxicam and I feel great at 5 mg.

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@gll104

I have PMR and have had difficulty tapering down to 5 mg of Prednisone. My Rheumatologist recently added Meloxicam and I feel great at 5 mg.

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@gll104 have you tried tapering down by 1 mg dosages? That helped me taper off once I got down to where I felt good. I'm taking Meloxicam as part of the after medication regime after my knee replacement surgery on April 5th. He gave me about a 3 week supply. Currently I'm taking 7.5 mg in the morning and one in the evening for inflammation.

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Hi Alan @alanbruce, I thought I would answer your private message in the Polymyalgia Rheumatic discussion so that others may also be able to offer suggestions or share their experience with Turmeric.

Your message said you are finally going off Prednisone this week after being on it for 20 months and on 1 mg for the last 6 weeks. Your Dr says it's time to go off. You said that you also have arthritis and tears in both shoulders and your Doc says that the Prednisone has helped you with non PMR caused pain but you may have more discomfort after this week. The Doc suggested IB Motrin or Tylenol. You mentioned having seen a lot of conversations about Turmeric and wondered if I had experience with it.

My PMR is still in remission and I do take a turmeric supplement daily – 1000 mg liquid turmeric with bioperene. I think it does help with inflammation but it's anyone's guess if it will help keep PMR at bay. You mentioned your doctor is "taking" you off of prednisone because it's time? Is your doctor a rheumatologist? I have no medical training or background and am not trying to second guess the doctor but I would be asking questions about if you are still having pain why is he taking you off of prednisone. Is it the side effects? It would make sense if you are no longer having pain from your PMR. I just wasn't sure if I read your message correctly.

John

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Thanks John, Very sorry I miss quoted my Doc and she did not say " because it's time" that was all my Thought. All of my test continue to be in the normal range (CRP and sed rate among others). The results of my recent MRI was not good. My pain is mainly in one arm ususally after i slept on it. I continue to work with a PT to increase my flexibility. I have slowly tapered over the last 20 months as directed by my rheumatologist and now on 1mg every other day and will go off Prednisone soon. I had a relaspe last year and had to go back to 5mg and I realize may have to go back on prednisone at some time in the future.
I very much appreciate all you do.
Alan

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@alanbruce

Thanks John, Very sorry I miss quoted my Doc and she did not say " because it's time" that was all my Thought. All of my test continue to be in the normal range (CRP and sed rate among others). The results of my recent MRI was not good. My pain is mainly in one arm ususally after i slept on it. I continue to work with a PT to increase my flexibility. I have slowly tapered over the last 20 months as directed by my rheumatologist and now on 1mg every other day and will go off Prednisone soon. I had a relaspe last year and had to go back to 5mg and I realize may have to go back on prednisone at some time in the future.
I very much appreciate all you do.
Alan

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Thanks Alan @alanbruce. I'm happy it's not the PMR. I have had similar experiences because I sleep on my side. Normally it will be my left arm and I will wake up with it feeling completely numb. So I just shake it off for a few minutes and roll over to the other side. My MRI was also not good as I have osteopenia. The doctor put me on 1200 mg of calcium daily but it plugs me up pretty bad so I went off for awhile and now found some calcium chews that don't seem to have the same effect as the tablets. I try to eat more calcium rich food and drink more milk but it's a struggle for me. I also had a bone scan which is when the doc put me on a calcium supplement.

Hoping you can finally get off of the prednisone. Don't be discouraged. We are all different. It took me a little over 3 years to taper off the first time PMR showed up. I was going between 1/2 mg and 1 mg for the last 6 months before I was able to stop taking it with just a little discomfort for pain.

John

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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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I just hate when my vision isn’t good! I’m so sorry yours is blurry. Have you seen an ophthalmologist (not an optometrist)? Ophthalmologists are doctors who are highly trained in diseases and conditions of the eye. My vision changed 3 times last year! The ophthalmologist said that prednisone can affect vision. The doctor can also evaluate the health of your eyes and is god to add to your list of MDs. I certainly hope things go well for you and your vision gets straightened out. Becky

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@johnbishop

Thanks Alan @alanbruce. I'm happy it's not the PMR. I have had similar experiences because I sleep on my side. Normally it will be my left arm and I will wake up with it feeling completely numb. So I just shake it off for a few minutes and roll over to the other side. My MRI was also not good as I have osteopenia. The doctor put me on 1200 mg of calcium daily but it plugs me up pretty bad so I went off for awhile and now found some calcium chews that don't seem to have the same effect as the tablets. I try to eat more calcium rich food and drink more milk but it's a struggle for me. I also had a bone scan which is when the doc put me on a calcium supplement.

Hoping you can finally get off of the prednisone. Don't be discouraged. We are all different. It took me a little over 3 years to taper off the first time PMR showed up. I was going between 1/2 mg and 1 mg for the last 6 months before I was able to stop taking it with just a little discomfort for pain.

John

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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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