PMR at 48 yrs old

Posted by julieschiwal1972 @julieschiwal1972, Sep 16 4:44pm

Anyone else here in the PMR diagnosis under the age of 50? I have questions about treatment and side effects. I quickly browsed the questions and noticed no one is mentioning the use of Methotrexate as an adjunct to Prednisone in order to reduce the length of time you are on the steroid. Is anyone else using this approach? Thank you in advance!
Julie

I was taking Methotrexate for two months and it had no affect whatsoever and my kidney function decreased so that was the end of that. Prednisone seems to be the only medicine that helps and although we don't care for the side effects we have no choice it seems.

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@jpalexander

I was taking Methotrexate for two months and it had no affect whatsoever and my kidney function decreased so that was the end of that. Prednisone seems to be the only medicine that helps and although we don't care for the side effects we have no choice it seems.

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Thank you for sharing your experiences Jp. Yeah, I don’t even want to consider it. Basically a poison, a type of chemo. Targeted but messes with our cellular function I believe.

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Julie, I am sorry to hear about your young PMR diagnosis. I was diagnosed with PMR at the age of 45. The pain actually started when I was 44 it took many, many doctors 5 months to decide on the diagnosis because they couldn't believe someone under the age of 50 had the disease. I am positive it started from a flu vaccination. I'm 62 now and have had PMR off and on for 18 years. I have PMR pain currently and am on a small dose of 3 mg prednisone. I was not offered any other treatment except one Rhumy said I could try hydroxychloroquine. I turned in down because I know a small amount of prednisone usually eliminates the pain.

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Thank you for sharing your experiences with PMR. And really sorry you’ve had to cope with this for so long, but as you said there don’t seem to be other options. Since you feel strongly the vaccine was responsible, I’d be curious to know if you have or had an underlying auto immune issue, such as Hashimotos thyroidisis? I too can correlate my symptoms with the shingrix vaccine last summer. But my physicians say there is no connection. As you may have read in other posts, there are several individuals who have a vaccine connection to this malady.

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@karinaph

Thank you for sharing your experiences with PMR. And really sorry you’ve had to cope with this for so long, but as you said there don’t seem to be other options. Since you feel strongly the vaccine was responsible, I’d be curious to know if you have or had an underlying auto immune issue, such as Hashimotos thyroidisis? I too can correlate my symptoms with the shingrix vaccine last summer. But my physicians say there is no connection. As you may have read in other posts, there are several individuals who have a vaccine connection to this malady.

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Hi Karinaph, I am sorry to hear the vaccine may have caused your PMR, you know your own body better than anyone, you should trust your instincts.

I did not and do not have any underlying auto immune issues. I was an extremely healthy physically active 44 year old, got the flu shot and the next day I could not get out of bed. Every physician in the HMO I belong to, has sworn the flu vaccine could not cause PMR. So I continued to get the vaccine… from 2003 to 2014 I had relapses of PMR at least 4 times. I just thought it was a normal thing. Then in 2014 I got the flu vaccine and within hours my blood pressure went sky high, I could barely make it back to the car from a short hike with a friend. Then I positively knew it was the vaccine. It was/is the worst case of PMR that I had ever had. I've been dealing with it ever since. The very small dose of prednisone I take keeps me functioning without the side effects of the larger doses. I'm hoping someday the PMR will go away 🙂 In addition, my younger sister has PMR… she got it from the 2014 flu vaccine as well. AND my mother had the same PMR symptoms, they started when she turned 50 and started getting flu vaccinations. I'm not an anti vaxxer…. I believe everyone should have a choice whether or not they want to be vaccinated. For my health, I will choose no vaccines in the future. No flu, no shingles, no COVID….. nada.

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@ltta

Hi Karinaph, I am sorry to hear the vaccine may have caused your PMR, you know your own body better than anyone, you should trust your instincts.

I did not and do not have any underlying auto immune issues. I was an extremely healthy physically active 44 year old, got the flu shot and the next day I could not get out of bed. Every physician in the HMO I belong to, has sworn the flu vaccine could not cause PMR. So I continued to get the vaccine… from 2003 to 2014 I had relapses of PMR at least 4 times. I just thought it was a normal thing. Then in 2014 I got the flu vaccine and within hours my blood pressure went sky high, I could barely make it back to the car from a short hike with a friend. Then I positively knew it was the vaccine. It was/is the worst case of PMR that I had ever had. I've been dealing with it ever since. The very small dose of prednisone I take keeps me functioning without the side effects of the larger doses. I'm hoping someday the PMR will go away 🙂 In addition, my younger sister has PMR… she got it from the 2014 flu vaccine as well. AND my mother had the same PMR symptoms, they started when she turned 50 and started getting flu vaccinations. I'm not an anti vaxxer…. I believe everyone should have a choice whether or not they want to be vaccinated. For my health, I will choose no vaccines in the future. No flu, no shingles, no COVID….. nada.

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Hi Itta, very interesting, and so sorry for those in your family too. I think the #’s of people getting this should be a research focus. As the MD ( on this site) who first mentioned the caution from researchers last fall in Ohio, it appears this is acknowledged in the scientific community but our FDA perhaps is doing a risk analysis, which I get but inform us so we can assess the risks. He mentioned the adjuvant which helps activate our immune response being a possible source of our reaction, and btw his too. I’d love to get this information to some researchers out there to do the clinical study and look at those who have reacted by getting PMR.

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I actually got a call after all my testing came back and he changed it from PMR to RA. I feel like my symptoms are PMR…and it seems the medications are the same either way. My Rheumatologist is tapering my Prednisone pretty quickly which I am happy about however I have to say it feels like the pain is creeping back in some days. Is that just the way it will be from now on? The pain is always there…just tolerable? And with the newer medications for RA will I be spared some of the symptoms of RA like the destruction of my hands? I don't have any hand symptoms yet…and I work with my hands so it scares me a bit.

Liked by karinaph

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@julieschiwal1972

I actually got a call after all my testing came back and he changed it from PMR to RA. I feel like my symptoms are PMR…and it seems the medications are the same either way. My Rheumatologist is tapering my Prednisone pretty quickly which I am happy about however I have to say it feels like the pain is creeping back in some days. Is that just the way it will be from now on? The pain is always there…just tolerable? And with the newer medications for RA will I be spared some of the symptoms of RA like the destruction of my hands? I don't have any hand symptoms yet…and I work with my hands so it scares me a bit.

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@julieschiwal1972, You might want to discuss a slower tapering schedule for the prednisone with your rheumatologist. Everyone is different when it comes to tapering off of prednisone for PMR symptoms. If he thinks you now have RA instead of PMR I would ask some questions to get a better explanation of why RA especially if the prednisone is addressing the pain symptoms. My first time with PMR took 3-1/2 years to taper of with a minimum amount of pain. My experience with tapering off has been to live with a minor amount of pain. I kept a daily log of the dosage and a pain scale I was feeling for that day from 1 to 10 (10 being the highest amount of pain). For me if it was more than 3, I went with a less reduction in the dosage when tapering. I typically went down by 2-1/2 mg a week but the last year I switched to 1 mg/weekly and the last six months I had to go back and forth between 1 mg and 1/2 mg until I could finally stop taking the prednisone and not be in a lot of pain.

Do you keep a daily log of your dosage and a pain scale?

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@karinaph

Hi Itta, very interesting, and so sorry for those in your family too. I think the #’s of people getting this should be a research focus. As the MD ( on this site) who first mentioned the caution from researchers last fall in Ohio, it appears this is acknowledged in the scientific community but our FDA perhaps is doing a risk analysis, which I get but inform us so we can assess the risks. He mentioned the adjuvant which helps activate our immune response being a possible source of our reaction, and btw his too. I’d love to get this information to some researchers out there to do the clinical study and look at those who have reacted by getting PMR.

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Hi Karinaph, I too would love to have some researchers do a clinical study to look at vaccine reactions = PMR. If I had known they could do such damage I would never have consented. It seems my mother's, sister's and my PMR reaction is hereditary. My son took my grandchildren in for flu shots yesterday. I just cringe thinking they could have a reaction and have to deal with a chronic condition.

Liked by karinaph

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Hi Itta, it does make one a bit concerned, yet I am always a vaccine supporter and have never had a real bad reaction, but this vaccine seems a bit different. I have not yet received my flu vaccine, and I’m a bit on the fence. Of course the flu can really be horrible, but if my body over reacts again, I don’t know what would be worse. Who else got the flu shot and still treating their PMR with prednisone (actively)?

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@julieschiwal1972

I actually got a call after all my testing came back and he changed it from PMR to RA. I feel like my symptoms are PMR…and it seems the medications are the same either way. My Rheumatologist is tapering my Prednisone pretty quickly which I am happy about however I have to say it feels like the pain is creeping back in some days. Is that just the way it will be from now on? The pain is always there…just tolerable? And with the newer medications for RA will I be spared some of the symptoms of RA like the destruction of my hands? I don't have any hand symptoms yet…and I work with my hands so it scares me a bit.

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Interesting Julie. I’m not an expert, but when I read about PMR and RA one of the classic distinctions (that I read) from a “symptom” level is when pain, discomfort, lack of mobility occurs. With PMR it is earlier in the day, whereas RA is the later in the day/eve it is worse. It was one of the observations my docs considered when giving me a diagnosis, since my blood work was not “classically” PMR. Also the bilateral immobility/pain is also a PMR symptom. Is your pain worse in AM or PM?

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You have my attention. I am a woman in my mid 60"s. I have Sjogrens. My whole family is fraught with RA and a whole host of other autoimmune conditions. Over the years I never had my blood work definitively show a diagnosis for many mystery symptoms. But one morning in early August 2018 when I had been feeling great, happy, spectacular weather, I woke up and couldn't raise my arm. fine when I went to bed! Few days later woke up and couldn't raise either arm. I tried to tell my doctors it wasn't a normal pain or ache and I hadn't done anything to cause it, that this was sudden onset. What followed was weeks of painful unnecessary PT. My husband had to dress me waist up. Certain movements like putting bra on and off not possible. Finally got diagnosed with PMR and put on step-down program of Prednisone which I hate. But it really helped. Still on low dose after 2 years. Step-down is slow. But it is true that it would be worse in the morning! As day progressed it would ease somewhat. I think that is what alerted my rheumy. I have to be on prednisone for bronchiectasis flare ups that occur only with illness and fortunately are far and few between; also thought to be autoimmune connected. Never smoked. So good luck to everyone with this stuff. No one believes you unless you are sick enough to wind up in an ER. My friend who is a doctor said I need to go to Mayo. Maybe when this pandemic is over.

Liked by karinaph

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@karinaph

Hi Itta, it does make one a bit concerned, yet I am always a vaccine supporter and have never had a real bad reaction, but this vaccine seems a bit different. I have not yet received my flu vaccine, and I’m a bit on the fence. Of course the flu can really be horrible, but if my body over reacts again, I don’t know what would be worse. Who else got the flu shot and still treating their PMR with prednisone (actively)?

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I just posted a reply to this string but saw your vaccine concern. I get flu shot every year. I think it has saved my life more than once. I have autoimmune connected lung disease, Sjogrens, PMR…. I have been getting treated for PMR 2 years now on slow step-down. Since I am a very reactive person to everything I too asked my rheumy if vaccines safe to get with PMR and she said get them. All my docs say the preventative is far better than getting sick. Myself I wouldn't worry. The flu with pneumonia is the worse! And as soon as Covid vaccine comes out they can stick that in my arm with that too. Realize everyone is different but I am a firm believer in vaccination.

Liked by karinaph

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@karinaph

Hi Itta, it does make one a bit concerned, yet I am always a vaccine supporter and have never had a real bad reaction, but this vaccine seems a bit different. I have not yet received my flu vaccine, and I’m a bit on the fence. Of course the flu can really be horrible, but if my body over reacts again, I don’t know what would be worse. Who else got the flu shot and still treating their PMR with prednisone (actively)?

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Hello @karinaph. I am new to this page. I was referred over from the Mesenteric Panniculitis page (which I also have). I have been on varying doses of Prednisone for the past three years and have not had a reaction to the flu shot. I hope this helps! I also had the Shingles vaccine a few months again without any reactions….yet….

Liked by karinaph

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@kimh

Hello @karinaph. I am new to this page. I was referred over from the Mesenteric Panniculitis page (which I also have). I have been on varying doses of Prednisone for the past three years and have not had a reaction to the flu shot. I hope this helps! I also had the Shingles vaccine a few months again without any reactions….yet….

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Thank you Kim for your experience. Sorry to hear that you too are having unexplained pain etc. I hope you get relief and resolution. Is Mesenteric Pannicultis auto immune? Were you referred here due to the treatment by prednisone or some crossover between these two maladies?

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