How long has PMR lasted - I'm trying to find the average

Posted by shannaam @shannaam, Apr 16, 2022

I've had PMR for just over a year now and I'm trying to reduce the Prednisone as I hate taking pharmaceuticals. Just wondering how long I'm going to have to put up with it! My doctor has said very little as they don't seem to know why people get only to take Prednisone to ease the pain. Also that it can last between 1 & 5 years! Just trying to find out from people who have it or had it - to get an average.

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@kimmur

How long does this last? I’m 61. I started having issues with pain in May of 2021 after Covid vaccines. I could hardly walk 1/2022. I can’t take Prednisone due to severe depression with it. I am Soooo over this!!!!!

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Each individual is different, and at different stages of physical and physiological response. at 78 I'm experiencing my 3rd round of PMR, the 1st time without Prednisone, and took nutracueticals with support from my naturopath. lasted around 2 yrs. the 2nd time, 10 years later; this time I had to go on Prednisone due to potential GCA - about 2 years until weaned off. 3rd time, again 10 years later, went onto prednisone immediately, with excellent results and no side affects, its now about 15 months and I have been weaning off very conservatively. and at 5 mg I decreased 1 mg per month, then at 3 mg decreased by 1/2 mg per month. You've probably read this many times from this amazing group, but your body really will let you know what it needs. Sometimes "timetables" don't match our health journey; sometimes you may find that you need to stay on a certain dosage for longer until you start to decrease again. Or, in some cases, you find the sweet spot at say 2 or 3 mg and stay on that indefinitely. My challenge was not getting caught up in other peoples "shoulds" - Quality of Life is the goal for many of us.... May I ask if you are getting some support counselling around this? Please know you are not alone in this...this is an amazing group of compassionate people who are experiencing this condition. Keep reaching out.

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@kimmur

How long does this last? I’m 61. I started having issues with pain in May of 2021 after Covid vaccines. I could hardly walk 1/2022. I can’t take Prednisone due to severe depression with it. I am Soooo over this!!!!!

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My depression went away as soon as I started taking prednisone. That is because my pain was mostly taken away. I also could do the activities that I used to do and enjoy living. Prednisone has its downsize but makes me feel so much better emotionally and physically. It is worth it.

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@loyal

My depression went away as soon as I started taking prednisone. That is because my pain was mostly taken away. I also could do the activities that I used to do and enjoy living. Prednisone has its downsize but makes me feel so much better emotionally and physically. It is worth it.

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A side effect of prednisone for some people is severe depression and that is how it effects me. The side effects of prednisone for me is worse than this horrible disease. I will need to pursue alternative treatments.

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@sashakay

Each individual is different, and at different stages of physical and physiological response. at 78 I'm experiencing my 3rd round of PMR, the 1st time without Prednisone, and took nutracueticals with support from my naturopath. lasted around 2 yrs. the 2nd time, 10 years later; this time I had to go on Prednisone due to potential GCA - about 2 years until weaned off. 3rd time, again 10 years later, went onto prednisone immediately, with excellent results and no side affects, its now about 15 months and I have been weaning off very conservatively. and at 5 mg I decreased 1 mg per month, then at 3 mg decreased by 1/2 mg per month. You've probably read this many times from this amazing group, but your body really will let you know what it needs. Sometimes "timetables" don't match our health journey; sometimes you may find that you need to stay on a certain dosage for longer until you start to decrease again. Or, in some cases, you find the sweet spot at say 2 or 3 mg and stay on that indefinitely. My challenge was not getting caught up in other peoples "shoulds" - Quality of Life is the goal for many of us.... May I ask if you are getting some support counselling around this? Please know you are not alone in this...this is an amazing group of compassionate people who are experiencing this condition. Keep reaching out.

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Would you share what nutraceuticals you used that you found to be helpful.

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@kimmur

Would you share what nutraceuticals you used that you found to be helpful.

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@kimmur, Here is a list of diet and supplements for PMR that may help but I would discuss them with your doctor or rheumatologist.

Diet and Supplements for Polymyalgia Rheumatica (PMR): https://www.arthritis-health.com/blog/diet-and-supplements-polymyalgia-rheumatica-pmr

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@kimmur

Would you share what nutraceuticals you used that you found to be helpful.

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I was one of the first people to try RECOVERY (a porcine serum polypeptide nutritional ) for PMR. The company was located near me on Vancouver Island so I was fortunate for the team there to work with me. If I understand this correctly it helped the matrix of the cells to stop my body attacking itself. But keep in mind that this was 30 years ago and I am sure there are many other things that could help. I did not take it for my second experience with PMR as my CRP marker was very high and I was near to having giant cell arteritis and it was too risky. I hope that helpsAnd I always urge people to research and discuss with knowledgable people before embarking on anything like this

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@sashakay

Each individual is different, and at different stages of physical and physiological response. at 78 I'm experiencing my 3rd round of PMR, the 1st time without Prednisone, and took nutracueticals with support from my naturopath. lasted around 2 yrs. the 2nd time, 10 years later; this time I had to go on Prednisone due to potential GCA - about 2 years until weaned off. 3rd time, again 10 years later, went onto prednisone immediately, with excellent results and no side affects, its now about 15 months and I have been weaning off very conservatively. and at 5 mg I decreased 1 mg per month, then at 3 mg decreased by 1/2 mg per month. You've probably read this many times from this amazing group, but your body really will let you know what it needs. Sometimes "timetables" don't match our health journey; sometimes you may find that you need to stay on a certain dosage for longer until you start to decrease again. Or, in some cases, you find the sweet spot at say 2 or 3 mg and stay on that indefinitely. My challenge was not getting caught up in other peoples "shoulds" - Quality of Life is the goal for many of us.... May I ask if you are getting some support counselling around this? Please know you are not alone in this...this is an amazing group of compassionate people who are experiencing this condition. Keep reaching out.

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Thank you for your information. I was diagnosed in March after about 3 years of pain episodes that were difficult to diagnose. Prednisone has improved my pain considerably. I am learning to live the best quality of life I can. Unfortunately I also have issues with back pain due to degenerative disc's. Tylenol for arthritis helps . Life should be about the best quality of life for each person.

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John, I reviewed the list of foods in the diest mentioned and I am between the proverbial rock and a hard place. Because of 45 yrs of Crohn's, my small intestine will not accept much roughage. I do take MSM and I think it helps. My sed rate and CPR are normal. (But the PMR is still active so do they really tell us anything?) I had hopes for turmeric but eventually it inflamed my nether regions. (Putting it delically.) So I do what I can, as we all do.

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@c75

Thank you for your information. I was diagnosed in March after about 3 years of pain episodes that were difficult to diagnose. Prednisone has improved my pain considerably. I am learning to live the best quality of life I can. Unfortunately I also have issues with back pain due to degenerative disc's. Tylenol for arthritis helps . Life should be about the best quality of life for each person.

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Thankyou for caring!

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think there is a british study that says the median is 7 years

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