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

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

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@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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@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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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.

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@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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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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@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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Amkaloha. See your Optometrist immediately. Advice by my primary and my rheumatoligst gave warning about any eye problem
My primary doc. called me while on a fishing trip to come back right away to see my optometrist. Good luck Brother, Ron.

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@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 am seeing a Retina Specialist who diagnosed my fluid on the retina. I asked him about the coincidence of the lymphodema and the fluid on my eye. He said he’d think about that if it were in both eyes. Mine is just in the left eye. Thanks for the reply.

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@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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Thanks Charlena for your reply. We definitely share similarities in our husbands. I failed to mention the bruising; oh my gosh! And, our rheumatologist confirmed my suspicions that Prednisone can cause dramatic personality and temperament changes. My husband recently went from 4 mg to 3mg and has not experienced the return of any pain 🙂 He started the Prednisone about 2 yrs. ago. We understand that the PMR can go into remission but, like others here, can likely return. It was good to hear from someone else who shares our issues.

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@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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I am now on 4 mg of prednisone. I am going to try this for a month, then try to go down to 3mg. I have not had any success in the past getting past 3 mg. (seems insane doesn’t it). I think sometimes you have to figure out what works for you. I don’t think my physician really knows what to do that is effective, so I am doing a little experimenting on my own. I was having a lot of pain in my feet, now it seems to be mostly in my upper arms (biceps). That is what is happening this wee, who knows about next week. I hope more studies are done to identify and cure this illness.
Keep moving people!

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@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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wow – sorry to hear you have such hard time even from 4 to 3mg (such low dose). I am currently on 10 and I doubt this dose is supporting or sustaining my platelet. Therefore I am thinking about asking tmy doctor to consider 10mg one day and 5 next day type of tapering…I am so fearful of this downward trip from past experience.
My tendonitis at shoulder is keeping me in throbing pain 24/7- I do take Tylenol but it is not an anti-inflammatory drug. ?Aleve is anti inflammatory but the pharmacist seems to think it (Aleve) may drag down platelet. I sure dont need that at this point.
I use LivRelieve and I use Voltaran and I use Traumeel gel (homeopathic). 2 days ago I got hold of a medicinal balm contarining 500mg THC in 30mL. The THC cream only tried once and I had an odd sensation from it so I stopped. (I never smoked marijuana.)
So far I feel all of the topical stuff only ease the pain very temporarily……
Bottomline is I am quite miserable….

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@jchatchett

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

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I sure hope tapering works.ill b curious to see how you do once you get to 5. Go slow!!

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@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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I haven’t thought of the the cream. Probably can’t access that Bc I’m n Texas. Worth looking into. I’m a believer in medical marijuana.

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@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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I have found a cream online called deep blue rub. It is a little expensive but that’s what I’m using

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Hi @rinron here is the message you shared with me that was meant for everyone in the group.

Hi Everyone. I want to thank all of you who responded to my call for help regarding my husband’s particular side effects from Prednisone. Seems only a few of you had similar thin-skin issues and volatile temperaments. I read all of your posts outloud and he appreciated them. That being said, he is not one to sit at the computer and you wont be seeing him here. He’s now down to 3 mg. with no discomforts. We still walk on eggshells :-).

Liked by Marlenea

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I also started on 20mg/day got down to 15mg then 5mg in the morning & then 5mg in the evening. When the monsoons came in 2 weeks the pain increased so I am back up to 15mg/day 10ng in the morning & 5mg in the evening. This PMR is difficult to deal with so work closely with your care provider. As far as taking the prednisone I usually have 1 glass of wine in the evening & it has not had any effects on me but be careful not everyone with this condition reacts alike.

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