How to address PMR pain while decreasing prednisone

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

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) group.

I found a new healthy (I think) cereal at Costco this past weekend. I was surprised that it didn't taste too bad. I've been taking turmeric capsules daily to help with inflammation and at one time I bought some organic turmeric powder and tried using a 1/4 tsp in a cup of coffee…yuck, didn't do that more than once. I like my coffee in the morning. 160 calories a cup without the milk so not too bad.

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@johnbishop

I found a new healthy (I think) cereal at Costco this past weekend. I was surprised that it didn't taste too bad. I've been taking turmeric capsules daily to help with inflammation and at one time I bought some organic turmeric powder and tried using a 1/4 tsp in a cup of coffee…yuck, didn't do that more than once. I like my coffee in the morning. 160 calories a cup without the milk so not too bad.

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The cereal would probably be too sweet for me but I drink camomile tea with sliced ginger root every evening and that helps

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If you buy curcumin capsules instead of turmeric you may find a different. Curcumin is the condensed form of turmeric. Good luck!

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@susie1950

I was trying Tumeric before I was diagnosed. It didn’t help me any. I hope it helps you

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@susie1950 glad you responded I was wondering if would help your condition

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@johnbishop

I found a new healthy (I think) cereal at Costco this past weekend. I was surprised that it didn't taste too bad. I've been taking turmeric capsules daily to help with inflammation and at one time I bought some organic turmeric powder and tried using a 1/4 tsp in a cup of coffee…yuck, didn't do that more than once. I like my coffee in the morning. 160 calories a cup without the milk so not too bad.

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Yuk John turmeric in coffee does sound terrible I won't do that one ……ha ha Beryl

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@sallygosse

If you buy curcumin capsules instead of turmeric you may find a different. Curcumin is the condensed form of turmeric. Good luck!

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Good to know. I will give it a try. Thanks sallygoose

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Hi all, I was just diagnosed with PMR and Temporal Arteritis (TA) today. I was diagnosed with SLE (Lupus) several years ago, which went into remission. I thought I was experiencing a Lupus flare, but no, this is a brand new autoimmune disease. Ugh! I'm taking prednisone right now, but have been managing the pain with plaquenil (my GP also thought it was a Lupus flare). I have only a few symptoms related to the TA, and they're infrequent. I hate the idea of having to take prednisone long(ish) term, meaning more than a month or so, but the risk of a problem if I don't take it – blindness – is scary! I'd like to know if anyone else here has it and what their experience has been. Thanks in advance for any thoughts.

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Hello my name is Beryl, I to have PMR and TA, and have been on Pres for a number of years , I haven't any sign as far as I know of TA any more but am still on Pres. for the PMR…..you will probably find that the Doc will adjust you meds as you go but it is necessary for you to take Pres. for your TA……just go with the flow and don't worry about it blood tests will tell the doc what's happening …….the best of British luck to you…..

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@evelyn123

Hi all, I was just diagnosed with PMR and Temporal Arteritis (TA) today. I was diagnosed with SLE (Lupus) several years ago, which went into remission. I thought I was experiencing a Lupus flare, but no, this is a brand new autoimmune disease. Ugh! I'm taking prednisone right now, but have been managing the pain with plaquenil (my GP also thought it was a Lupus flare). I have only a few symptoms related to the TA, and they're infrequent. I hate the idea of having to take prednisone long(ish) term, meaning more than a month or so, but the risk of a problem if I don't take it – blindness – is scary! I'd like to know if anyone else here has it and what their experience has been. Thanks in advance for any thoughts.

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Hi @evelyn123, welcome to Connect. I also have PMR but it is currently in remission. It's different with each of us. I have had 2 occurances of PMR. The first took me about 3 years to taper off of prednisone. The second occurrence took me about a year and a half to taper off of prednisone. I started both occurrences at 20 mg dosage. One of the things I think that helps is to keep doing some exercises but not overdoing it. Also, I would work with your rheumatologist or doctor on a tapering plan to help you taper off of prednisone.

John

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@evelyn123

Hi all, I was just diagnosed with PMR and Temporal Arteritis (TA) today. I was diagnosed with SLE (Lupus) several years ago, which went into remission. I thought I was experiencing a Lupus flare, but no, this is a brand new autoimmune disease. Ugh! I'm taking prednisone right now, but have been managing the pain with plaquenil (my GP also thought it was a Lupus flare). I have only a few symptoms related to the TA, and they're infrequent. I hate the idea of having to take prednisone long(ish) term, meaning more than a month or so, but the risk of a problem if I don't take it – blindness – is scary! I'd like to know if anyone else here has it and what their experience has been. Thanks in advance for any thoughts.

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@evelyn123 – Hi – I am Tinkerbell and was diagnosed with Temporal Arteritis – It is also know as Giant Cell Arteritis. I had my temporal biopsy on 3 May 2017 at Mayo Clinic. I was started on 60 mg of Prednisone 1 and 1/2 years ago. I took my last pill yesterday (1/2mg). It has been a long road and I have gained 12 lb. Otherwise, I have done very well. I am hoping that I will be okay but there is the chance I may have to go back on the Prednisone depending on the symptoms. Once I started on the Prednisone the headache was gone by that evening. The biopsy was done 1 day after my emergency room visit. I also have other autoimmune diseases – hypothyroid and rosacea. If you have any question just get back to me.

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@tinkerbell

@evelyn123 – Hi – I am Tinkerbell and was diagnosed with Temporal Arteritis – It is also know as Giant Cell Arteritis. I had my temporal biopsy on 3 May 2017 at Mayo Clinic. I was started on 60 mg of Prednisone 1 and 1/2 years ago. I took my last pill yesterday (1/2mg). It has been a long road and I have gained 12 lb. Otherwise, I have done very well. I am hoping that I will be okay but there is the chance I may have to go back on the Prednisone depending on the symptoms. Once I started on the Prednisone the headache was gone by that evening. The biopsy was done 1 day after my emergency room visit. I also have other autoimmune diseases – hypothyroid and rosacea. If you have any question just get back to me.

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@evelyn123. I am elderdiana.Three years ago while on vacation, I temporarily lost my vision in right eye, also jaw pain. When I got home my primary care Doc told me to go to.hospital immediately.I had no headache pain. After 2 days of tests, I was told I did not have TA, also called giant cell arteritis, said it was migraine headaches in eye. My doc insisted I should have a biopsy which was done dec 1 2015 and TA was confirmed att another hospital. I WAS PUT ON 60mg of prednasone For 3 months and methotrexate was added. Prednasone was slowly lowered until last march 2018 down to 3 mg. That is when my sed rate and c reactive protein tests began to climb. My rheumatologist wanted me to come in once a month for intravenous injections of Actemra in her office.I REFUSED. Because INTRAVENOUS USE of this drug is not allowef by FDA.for temporal arthritis. Until a few weeks ago I was still on 3 mg and my c reactive protein test hit 27.I called and said I want more prdnazone and was put on 5mg. My blood tests are improving. I HAVE A LONG TIME Primary CARE DOC I CAN TALK TOO in addition to seeing the Rheumatologist, every 6 weeks. I hope you do not have TA it is a complex disease especially with eye involvement but it is .manageable. It is helpful to read Mayo connect about others withf TA. to view their progress and also good to have a good primary care doc in addition to your rumatolagist.

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@johnbishop

Exercise is one of the keys to PMR. I hated doing it but once you get into a routine and find one that is not too difficult or that causes more pain it’s not too bad. I bought a recumbent bike, elliptical combination and use it for 30 minutes when I first get up 5 to 6 days a week and then a few times a week I use it in the evenings for 30 minutes while watching the news. It’s easy for those that have trouble or don’t like walking because it has a larger seat and pedals so doesn’t cause joint pain. I also started using a therapy band to see if I can regain some strength in my hands, arms and shoulders.

Keep working on him to exercise!

John

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I am new to the group, having been diagnosed in Sep. 18. with PMR at 67.i was very healthy and walked 3-5 miles every day. Then one day when I got up from a chair I felt a stiffness in back of my thighs and I struggled a little to get started moving. Then over a few weeks the bottom fell out for me. I am still in a state of disbelief, shock, that this has happened to me. Nights are awful.

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