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

@susie1950

Yes. 40mg for 2 days than dropped me to 25mg today. I woke up stiff again. We will see how I do on 25mg. Having all this background from others sharing makes it less scary. I am very active and not being able to go mow my lawn is hard on me

Jump to this post

@susie1950 there's no golden rule for tapering down on prednisone. I'm sure they are trying to lower the dose as quick as possible but you might want to raise it up to 30 if you are still in pain when you drop to 25. 40mg to 25mg is a pretty big jump. I was started at 20mg for both occurrences of PMR and I tried to go down by 5 every week or 2 weeks then if I had any pain I would go back up for 3 days to the previous dosage, then go down 2-1/2mg instead of 5 to see if that worked OK. I'm sure your doctor will work with you to come up with a tapering plan that works for you. We are all different so there's no one answer that works for everyone. It is really good that you are active. With PMR it's important to keep doing some exercise but just not over do it.

Liked by Dee

REPLY

@johnbishop with your PR. Have you tried the ginger-Tumeric tea?Id be fine interested to know how it affected you 😃

Liked by Dee

REPLY
@lioness

@johnbishop with your PR. Have you tried the ginger-Tumeric tea?Id be fine interested to know how it affected you 😃

Jump to this post

I haven’t tried it yet. My daughter was supposed to pick some up for me but I forgot to ask her today.

Liked by Dee, lioness

REPLY
@susie1950

Yes. 40mg for 2 days than dropped me to 25mg today. I woke up stiff again. We will see how I do on 25mg. Having all this background from others sharing makes it less scary. I am very active and not being able to go mow my lawn is hard on me

Jump to this post

Hello Susie 1950 my name is Beryl and I am one of the unfortunate ones that has had PMR for a number of years …..most people I believe get over this thing in a couple of years or less so don't be discouraged at the longevity that some of us have taken to recover…….keep warm and onwards and upwards…..best of luck…..

REPLY
@susie1950

Yes. 40mg for 2 days than dropped me to 25mg today. I woke up stiff again. We will see how I do on 25mg. Having all this background from others sharing makes it less scary. I am very active and not being able to go mow my lawn is hard on me

Jump to this post

Yes Susie 1950 you will see that the frustration of not being able to go and do things in the garden and being as active as we would like to be is common with us all …..but be good and do not over do it in any way give yourself a chance to recover …..Beryl

REPLY
@lioness

@johnbishop with your PR. Have you tried the ginger-Tumeric tea?Id be fine interested to know how it affected you 😃

Jump to this post

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

REPLY

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.

IMG_2613

Liked by lioness

REPLY
@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.

Jump to this post

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

REPLY

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

REPLY
@susie1950

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

Jump to this post

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

REPLY
@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.

Jump to this post

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

REPLY
@sallygosse

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

Jump to this post

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

REPLY

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.

REPLY

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…..

REPLY
@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.

Jump to this post

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

REPLY
Please login or register to post a reply.