1. < Polymyalgia Rheumatica (PMR)

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

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angelard | @angelard | Mar 14, 2017
In reply to @momij "I have a love/hate relationship with prednisone. When my kidneys failed 5 years ago it saved..." + (show)
@momij

I have a love/hate relationship with prednisone. When my kidneys failed 5 years ago it saved my life. I was on high doses to begin with and then tapered down. The prednisone put my minimal change disease in remission... then I started weaning off and began having excruciating pain all over - I believed it to be from the prednisone withdrawal.... then I had a relapse of my kidney disease, again helped by higher doses of prednisone... then began to wean again... and then the pain again... ended up working with endocrinology to change over to hydrocortisone and taper that VERY slowly as I had been on the prednisone long enough to now have secondary adrenal insufficiency. I was exhausted and still in pain after that. I was diagnosed then with spondylitis and take 5 mg daily to help keep that and my kidney disease at bay. I hate taking it but every time I taper below 5 things get worse for me. At 5 mgs my side effects are not insignificant but are tolerable mostly - I have gained 65 lbs., have a puffy moon face and neck, thin sin, trouble sleeping, anxiety, bruising, irritability, am ravenous... at the higher doses I become much puffier, hungrier, angrier, anxious, sweat a lot, have really bad hot flashes. And though my bone density scans come back normal I have broken my ankle doing absolutely nothing and have had 2 teeth break off at the roots and needs implants.Good luck!

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May I ask how high was your dosage?

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charlena | @charlena | Mar 14, 2017
In reply to @rinron "I think this will be introducing a new topic, but I dont know where else to..." + (show)
@rinron

I think this will be introducing a new topic, but I dont know where else to do it. My husband has been dealing with PMR for two years. He's gotten down to 3 mg of Prednisone just recently. The one issue I have not seen commented on in this group are the side effects of being on Prednisone. Yes, everyone wants to get off of it, but no one says why. . .Well, I can tell you why we want my husband to be off of it--skin is so very thin he bleeds at the slightest touch! It's become a joke in our family--I'll just buy all new towels and sheets when he's through the tunnel; don't go outside without a longsleeve shirt on, and so on. And the touchy temperament; oh my. . . Can some of you pls share with us your experiences with side effects ??

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My husband is on 5 mg of prednisone daily. His skin also is so thin that he bleeds with the slightest touch and oh, the bruising! Regarding temperament- he is a very easy going, mild mannered person, but I noticed a difference in his temperament about 2 weeks after he started taking the prednisone. He developed a short temper and became somewhat hateful, both characteristics he has never had. When I told his rheumatologist about this, he said he couldn't believe my husband could be affected in that short period of time. He has been on the prednisone going on three years. He has not experienced any weight gain. He also has had vein bleeds due to his thin skin and, I must say, that is scary the first time it happens.
Thank you to everyone who shares their experiences with PMR and prednisone. It is always helpful.

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Guener | @guener | Mar 14, 2017
In reply to @rinron "I think this will be introducing a new topic, but I dont know where else to..." + (show)
@rinron

I think this will be introducing a new topic, but I dont know where else to do it. My husband has been dealing with PMR for two years. He's gotten down to 3 mg of Prednisone just recently. The one issue I have not seen commented on in this group are the side effects of being on Prednisone. Yes, everyone wants to get off of it, but no one says why. . .Well, I can tell you why we want my husband to be off of it--skin is so very thin he bleeds at the slightest touch! It's become a joke in our family--I'll just buy all new towels and sheets when he's through the tunnel; don't go outside without a longsleeve shirt on, and so on. And the touchy temperament; oh my. . . Can some of you pls share with us your experiences with side effects ??

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I have fortunately not been on Prednisone for a long time (thanks to other drugs I take for my Crohn's Disease). When I was taking Prednisone I was on a fairly high dose for an extended period of time. During those months I had an appetite that would not stop, insomnia, mood swings and hot flashes. Tapering down was difficult and at times painful. The biggest side effect I had was avascular necrosis, stop of blood flow in my hip, that caused enough damage that I had a bone graft and eventually, recently, a full hip replacement. I don't recall if my skin got thinner at the time or not, but I was in my 30's when taking the drug. It's a very powerful and wondrous drug, but the side effects are usually a problem over time.

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bertbiz | @bertbiz | Mar 14, 2017
In reply to @rinron "I think this will be introducing a new topic, but I dont know where else to..." + (show)
@rinron

I think this will be introducing a new topic, but I dont know where else to do it. My husband has been dealing with PMR for two years. He's gotten down to 3 mg of Prednisone just recently. The one issue I have not seen commented on in this group are the side effects of being on Prednisone. Yes, everyone wants to get off of it, but no one says why. . .Well, I can tell you why we want my husband to be off of it--skin is so very thin he bleeds at the slightest touch! It's become a joke in our family--I'll just buy all new towels and sheets when he's through the tunnel; don't go outside without a longsleeve shirt on, and so on. And the touchy temperament; oh my. . . Can some of you pls share with us your experiences with side effects ??

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Hi Rinron,
I was on Prednisone for 2 1/2 months for MP. I didn't have many side effects while I was on it. But as I was tapering off of it, my hair started to come out in clumps. I never had bald spots, but a lot of hair loss. I can only be grateful I have a lot of hair to begin with. It took almost 6 months for my hair to come back.

I wish you all good things.

Bertbiz

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angelard | @angelard | Mar 14, 2017
In reply to @rinron "I think this will be introducing a new topic, but I dont know where else to..." + (show)
@rinron

I think this will be introducing a new topic, but I dont know where else to do it. My husband has been dealing with PMR for two years. He's gotten down to 3 mg of Prednisone just recently. The one issue I have not seen commented on in this group are the side effects of being on Prednisone. Yes, everyone wants to get off of it, but no one says why. . .Well, I can tell you why we want my husband to be off of it--skin is so very thin he bleeds at the slightest touch! It's become a joke in our family--I'll just buy all new towels and sheets when he's through the tunnel; don't go outside without a longsleeve shirt on, and so on. And the touchy temperament; oh my. . . Can some of you pls share with us your experiences with side effects ??

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Hi,
I can imagine the damage it does to the bones when, in your case you were young when taking it.
I am 65 now and have been offered cortisone injection to my hip when the pain is unbearable then hip replacement.
(Been on it since Sept 2015 and still cannot get rid of it).
May I know where did they do the bone graft? around the hip? What did your doctor go by when they told you hip replacement was necessary??
My MRI did confirm oesteonecrosis of the hip but the pain is at the femur usually....I am at 10mg now and dreading tapering as I had the tapering course before and I honestly move and walk like a cripple!
I also have painful tendonitis of one shoulder - not sure if related to platelet being up and down or the prednisone. Have been told this prob last from 6 mos to a year. Dont want to rely on Tylenol all the time as pain relief so thinking about asking for medical marijuana.
A

REPLY
Guener | @guener | Mar 14, 2017
In reply to @rinron "I think this will be introducing a new topic, but I dont know where else to..." + (show)
@rinron

I think this will be introducing a new topic, but I dont know where else to do it. My husband has been dealing with PMR for two years. He's gotten down to 3 mg of Prednisone just recently. The one issue I have not seen commented on in this group are the side effects of being on Prednisone. Yes, everyone wants to get off of it, but no one says why. . .Well, I can tell you why we want my husband to be off of it--skin is so very thin he bleeds at the slightest touch! It's become a joke in our family--I'll just buy all new towels and sheets when he's through the tunnel; don't go outside without a longsleeve shirt on, and so on. And the touchy temperament; oh my. . . Can some of you pls share with us your experiences with side effects ??

Jump to this post

I had a free vascularized fibular graft done at Duke University back in 2001, so that lasted me 15 years before the hip replacement at age 51 when x-ray's showed that the hip osteoarthritis was at a point for replacement. I could not be happier with my new hip: it works perfectly and there is no more pain at all.

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jchatchett | @jchatchett | Mar 15, 2017

I started at 20 mg now I am at 9 mg.

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2 replies
crhp194 | @crhp194 | Mar 15, 2017
In reply to @johnbishop "Hello @rinron, when I was first diagnosed with PMR and was put on prednisone for about..." + (show)
@johnbishop

Hello @rinron, when I was first diagnosed with PMR and was put on prednisone for about 3 years before I was able to taper off, my main side effect was weight gain and fluid retention. My PMR went into remission for about 6 years and came back August of last year so I was back on 20 mg prednisone. I have been able to taper down to 10 mg but am struggling a bit to go below that. Knowing what my side effects were the first go around has given me extra incentive to work on not gaining more weight and trying to exercise a little more.

Mayo Clinic has some information on the major, minor and unknown possible side affects here:
http://www.mayoclinic.org/steroids/art-20045692?pg=2
Drugs.com also has a comprehensive list of side effects here:
https://www.drugs.com/sfx/prednisone-side-effects.html
Hopefully others will share their common side effects.

John

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I have been on prednisone for 7 months, started at 40mgs, now down to 7mg. Gained weight at first as I could have eaten whole pies, cakes etc. Now am not gaining but find it hard to lose. I keep involved in my hobbies (I am 73) and keep involved with friends. I suppose I have had other side effects but keeping busy doesn't allow me time to think about them. I am just happy to be alive after open heart surgery and giant cell arteritis. Each person is different, however, and I feel so sorry for the ones that have bad side effects. Best to all of you-at least we are still here.

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barbararene | @barbararene | Mar 16, 2017
In reply to @momij "I have a love/hate relationship with prednisone. When my kidneys failed 5 years ago it saved..." + (show)
@momij

I have a love/hate relationship with prednisone. When my kidneys failed 5 years ago it saved my life. I was on high doses to begin with and then tapered down. The prednisone put my minimal change disease in remission... then I started weaning off and began having excruciating pain all over - I believed it to be from the prednisone withdrawal.... then I had a relapse of my kidney disease, again helped by higher doses of prednisone... then began to wean again... and then the pain again... ended up working with endocrinology to change over to hydrocortisone and taper that VERY slowly as I had been on the prednisone long enough to now have secondary adrenal insufficiency. I was exhausted and still in pain after that. I was diagnosed then with spondylitis and take 5 mg daily to help keep that and my kidney disease at bay. I hate taking it but every time I taper below 5 things get worse for me. At 5 mgs my side effects are not insignificant but are tolerable mostly - I have gained 65 lbs., have a puffy moon face and neck, thin sin, trouble sleeping, anxiety, bruising, irritability, am ravenous... at the higher doses I become much puffier, hungrier, angrier, anxious, sweat a lot, have really bad hot flashes. And though my bone density scans come back normal I have broken my ankle doing absolutely nothing and have had 2 teeth break off at the roots and needs implants.Good luck!

Jump to this post

I understand this tapering off. I seem to manage pretty well on 5b mg, but even when I go down to 4 1/2 mg, I can tell the difference. I know I need to get off of the prednisone, but I also have to be able to get up everyday and function. Very frustrating. Some days, I am almost free of pain and other days more pain. I use the scale of 1 to 10 for pain. Today I am at a 5 which is great. This last week-end it was about a 7.

REPLY
angelard | @angelard | Mar 16, 2017
In reply to @momij "I have a love/hate relationship with prednisone. When my kidneys failed 5 years ago it saved..." + (show)
@momij

I have a love/hate relationship with prednisone. When my kidneys failed 5 years ago it saved my life. I was on high doses to begin with and then tapered down. The prednisone put my minimal change disease in remission... then I started weaning off and began having excruciating pain all over - I believed it to be from the prednisone withdrawal.... then I had a relapse of my kidney disease, again helped by higher doses of prednisone... then began to wean again... and then the pain again... ended up working with endocrinology to change over to hydrocortisone and taper that VERY slowly as I had been on the prednisone long enough to now have secondary adrenal insufficiency. I was exhausted and still in pain after that. I was diagnosed then with spondylitis and take 5 mg daily to help keep that and my kidney disease at bay. I hate taking it but every time I taper below 5 things get worse for me. At 5 mgs my side effects are not insignificant but are tolerable mostly - I have gained 65 lbs., have a puffy moon face and neck, thin sin, trouble sleeping, anxiety, bruising, irritability, am ravenous... at the higher doses I become much puffier, hungrier, angrier, anxious, sweat a lot, have really bad hot flashes. And though my bone density scans come back normal I have broken my ankle doing absolutely nothing and have had 2 teeth break off at the roots and needs implants.Good luck!

Jump to this post

My dr seems to have a different way of tapering: I am at 10mg now and last 2 or 3 weeks I have been on 10mg alternating with 15 mg/d.
I know the next order from her likely will be 10mg alternating with 5mg. But I am already noticing the profound tiredness and the achiness of the body. My dr has never ordered half mg during tapering.... but interesting concept.
I also go to naturopath clinic which gives me adrenal support during the tapering days. After I take the tincture, my body feels hot...
I dread this downward 'trip'...
A

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