barbararene
@barbararene
@barbararene
Posts: 45
Joined: Feb 14, 2017
Polymyalgia rheumatica
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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beryl
@beryl
@beryl
Posts: 145
Joined: Jun 15, 2018
@barry51 Hello everyone. My name is Barry and I’m 67. I was diagnosed approx 4 years ago. Same onset as everyone else; an incredible aging overnight. This vibrant athlete went to old man in milliseconds. Anyway just like everyone else 20 mg of the the prednisone and I was my old self again. Miracle!
Then the bad news. I am hooked. I got down to 2.5 mg and crashed. I always crash below 3. Now back up to 5 today. I too was told to go on methotrexate and refused. Anyone get good results ? Cured ? Or is the pill worse than the disease. Any supplements
Help ? I don’t mean placebo but really help? It’s very discouraging because you think you’re getting close to the end. Sed rate is good but doesn’t mean anything. Still have PMR with good sed rate. I haven’t heard from one person on this site that there is hope. Only failure. Can anyone give us any hope to this terrible disease. I now have my fingers deforming and swelling. They hurt too. Some days it’s my legs, some days my neck. Always my fingers. Somebody tell me I’m not going down the drain. Thanks
Hello Barry my name is Beryl ….well I have just read your post , and by the way welcome , it's the sort of feeling that we all get ……difficult to judge about the methotrexate my Doc said it wasn't right for me so I presume that yours has thought it over and thinks it is right for you , but ask him why it is right for you ……
We all appear to be very fit before this strikes …..I asked my doc why is this so …..he said we don't know you work it out and tell me ……ok……
As for how and when you will be without PMR we are all different Barry and no one is the same ,some get over this thing in one or two years, that is what I was told at the beginning….well I am one of the lucky ones and have had it for ten ……but you know one of the things that helps is trying to feel as normal in yourself as possible …..don't stop laughing and having a good time attitude helps ……hark at me going on ……well my thoughts with many others are with you ……good luck with your recovery…..Beryl
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lioness
@lioness
@lioness
Posts: 5139
Joined: Jan 09, 2018
@grandmar. Hi I want to share some information for all fibromyalgia and Lyme disease I found I don't know how to insert the Fedupwithfatigue.com website ,click on this I guess
Fibro@Lyme are lumped together here's some things they stated go on a Autoimmune Paleo diet add to this bone broth first detox your intestines next go to a sauna , for about 10-15 minutes this sweats out the toxins .site is Everlywell.com lots of info here for pain go to Amazon for ActiPatch .Another piece of news is There's a 17 % reduction in opiods
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grandmaR
@grandmar
@grandmar
Posts: 1118
Joined: Feb 07, 2018
@lioness @grandmar. Hi I want to share some information for all fibromyalgia and Lyme disease I found I don't know how to insert the Fedupwithfatigue.com website ,click on this I guess
Fibro@Lyme are lumped together here's some things they stated go on a Autoimmune Paleo diet add to this bone broth first detox your intestines next go to a sauna , for about 10-15 minutes this sweats out the toxins .site is Everlywell.com lots of info here for pain go to Amazon for ActiPatch .Another piece of news is There's a 17 % reduction in opiods
@lioness
Thank you for the information, but I don't have Lyme disease.
I do know they are both classified as auto-immune diseases.
I know that they say that if you eat clean, it will help with inflamation.
I am trying that!
Thanks again for the info!
Have a great weekend!!!!
Ronnie (GRANDMAr)
lioness
@lioness
@lioness
Posts: 5139
Joined: Jan 09, 2018
@grandmar I didn't mean you had Lyme but some have stayed they had a diagnosis of Lyme I know going to a sauna does get rid of toxins in body which I haven't been to in awhile Going to have to start but eating the auto immune diet maybe not so restricted. Have a good weekend.:-)
Liked by grandmaR
@barry51 Hello everyone. My name is Barry and I’m 67. I was diagnosed approx 4 years ago. Same onset as everyone else; an incredible aging overnight. This vibrant athlete went to old man in milliseconds. Anyway just like everyone else 20 mg of the the prednisone and I was my old self again. Miracle!
Then the bad news. I am hooked. I got down to 2.5 mg and crashed. I always crash below 3. Now back up to 5 today. I too was told to go on methotrexate and refused. Anyone get good results ? Cured ? Or is the pill worse than the disease. Any supplements
Help ? I don’t mean placebo but really help? It’s very discouraging because you think you’re getting close to the end. Sed rate is good but doesn’t mean anything. Still have PMR with good sed rate. I haven’t heard from one person on this site that there is hope. Only failure. Can anyone give us any hope to this terrible disease. I now have my fingers deforming and swelling. They hurt too. Some days it’s my legs, some days my neck. Always my fingers. Somebody tell me I’m not going down the drain. Thanks
There's hope! I was diagnosed at 57 ,great health and then PMR/GCA came into my life. Johns Hopkins suggested I take 200 mg celebrex to help me taper. (other two other attempts at tapering did not work under 5mg). It worked. I also went to an extreme diet, no dairy, wheat, sugar, soy. Anti inflammatory diet didn't help me. I finally have lost 19 pounds of the 30 I gained on pred over 3 years. I didn't think I could do it ,but whatever ,it's working. I still have a martini a few times a week and some dark chocolate.. Don't give up or you will feel more stiff and pained. Prayers for you, if you don't mind.
REPLY
John, Volunteer Mentor
@johnbishop
@johnbishop
Posts: 4897
Joined: Mar 22, 2016
@kdmorris There's hope! I was diagnosed at 57 ,great health and then PMR/GCA came into my life. Johns Hopkins suggested I take 200 mg celebrex to help me taper. (other two other attempts at tapering did not work under 5mg). It worked. I also went to an extreme diet, no dairy, wheat, sugar, soy. Anti inflammatory diet didn't help me. I finally have lost 19 pounds of the 30 I gained on pred over 3 years. I didn't think I could do it ,but whatever ,it's working. I still have a martini a few times a week and some dark chocolate.. Don't give up or you will feel more stiff and pained. Prayers for you, if you don't mind.
Hi @kdmorris, welcome to Connect. Thank you for sharing your journey with PMR/GCA and how you were able to manage tapering off. It really helps others when you can share what worked for you.
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John, Volunteer Mentor
@johnbishop
@johnbishop
Posts: 4897
Joined: Mar 22, 2016
@sidsell1 PMR sufferers , does anyone feel like you had the wind knocked out of you in the AM. , and shortness of breath ???? usually Advil will help somewhat.
Hello @sidsell1, welcome to Connect. I have PMR but it's currently in remission. When it was active I just felt pain in my joints when I woke up. I don't remember having breathing issues. Hopefully some other members here can share their experience with PMR.
Have you talked to your doctor about the shortness of breath? The reason I ask is that it might not be related to PMR.
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noosat1
@noosat1
@noosat1
Posts: 88
Joined: Dec 20, 2018
@sidsell1 PMR sufferers , does anyone feel like you had the wind knocked out of you in the AM. , and shortness of breath ???? usually Advil will help somewhat.
Yes !!
REPLY
ambershe
@ambershe
@ambershe
Posts: 13
Joined: Mar 09, 2019
@rachelp It has been for me. I consulted a rheumatologist at the Mayo Clinic in Jacksonville, FL. She told me that I should make an appointment with my ophthalmologist when I returned home and that he should regularly check my eyes. She also stressed that I was to quickly contact my ophthalmologist if I had changes in vision.
Within six months after beginning prednisone therapy, I required cataract surgery. I have had vision problems ever since beginning prednisone therapy. Currently I am sometimes experiencing double vision, and my visual acuity is like a flea. I have had to have lens changes as often as every three months. Needless to say, I have resorted to seeking out Success Vision.
Sweating has been a serious issue with me. About three times a day (especially at least once at night) I sweat from head to toe. I can feel the sweat on my scalp. It is caused by prednisone.
You might Google "side effects of prednisone." I did. I learned a lot.
Prednisone is Dr. Jekyl and Mr. Hyde. It miraculously relieves the pain of PMR and restores mobility, but its side effects are horrible.
Good luck to you as you deal with this disease.
that is amazing., seems you can't win. I am done to 4mg of prednisone just over the weekend and I feel pain in my right leg, I am hoping the pain remains manageable so I can taper right off of prednisone as yes, it is causing me to sweat more and the blurred vision is so annoying. The reason I wrote that is so amazing that i am happy that we are all going through this not to wish this on anyone, but it is exactly the same. I am not crazy and it is not just me. I wish you good luck as you deal with the polymyalgia too. thanks for the info!
REPLY
Pauletta
@rachelp
@rachelp
Posts: 21
Joined: Oct 27, 2018
@beryl Hello Barry my name is Beryl ….well I have just read your post , and by the way welcome , it's the sort of feeling that we all get ……difficult to judge about the methotrexate my Doc said it wasn't right for me so I presume that yours has thought it over and thinks it is right for you , but ask him why it is right for you ……
We all appear to be very fit before this strikes …..I asked my doc why is this so …..he said we don't know you work it out and tell me ……ok……
As for how and when you will be without PMR we are all different Barry and no one is the same ,some get over this thing in one or two years, that is what I was told at the beginning….well I am one of the lucky ones and have had it for ten ……but you know one of the things that helps is trying to feel as normal in yourself as possible …..don't stop laughing and having a good time attitude helps ……hark at me going on ……well my thoughts with many others are with you ……good luck with your recovery…..Beryl
Thank you for your post. I, too, thought PMR would go into remission in about a year as did my doctor. Guess what. I am well into my third year and am currently taking 12 MGS of prednisone daily. I am tapering 1 MG per month. I appreciated your post most especially because it gave me a reality check. This disease has a mind of its own given the body it is occupying.
REPLY
Pauletta
@rachelp
@rachelp
Posts: 21
Joined: Oct 27, 2018
@becsbuddy I just hate when my vision isn’t good! I’m so sorry yours is blurry. Have you seen an ophthalmologist (not an optometrist)? Ophthalmologists are doctors who are highly trained in diseases and conditions of the eye. My vision changed 3 times last year! The ophthalmologist said that prednisone can affect vision. The doctor can also evaluate the health of your eyes and is god to add to your list of MDs. I certainly hope things go well for you and your vision gets straightened out. Becky
I am so glad you made this post. My vision, too, changed three times last year, and my rheumatologist told me that she thought it was the prednisone. She encouraged me to see my ophthalmologist regularly. While I am sorry that you have vision problems, it is helpful to know that someone else has had the same experience. I have had one lens change this year, and I think another is in my future.
REPLY
Pauletta
@rachelp
@rachelp
Posts: 21
Joined: Oct 27, 2018
@sidsell1 thank you for your advice , my appointment is a week from today (with a rheumatologist) (very hard to get ) this pain is difficult to deal with , it came on suddenly, Im thinking its because of much stress.
I agree with your thought that stress can trigger the symptoms of PMR. It did for me–in my opinion. The problem is that once it activates ,
it doesn't want to go away.
Pauletta
@rachelp
@rachelp
Posts: 21
Joined: Oct 27, 2018
@redhen Hi. This is my first message on Mayo Clinic Connect, but I've been around for awhile, reading. I need to speak up on this topic of CRP and ESR (Sed Rate) because it can delay proper diagnosis. I encountered this personally and was denied Plaquenil for years despite long term Sjogren's Syndrome — over forty years.
Somehow, a bunch of rheumatologists got the false idea that it is necessary for patients to demonstrate inflammation by having elevated markers. This is just not so, and has been proven many times. Patient surveys and academic studies show that it "just ain't so." I went through 30 years of paper and electronic medical records of metabolic tests and, no matter what I was going through at the time I have NEVER had an inflammatory marker over the normal range.
You are so right about the markers, and I am grateful for your comments. My inflammatory markers were, initially, high. After a short period of treatment with prednisone, they dropped into the normal range. After about six months of reduction in dosage, as the dosage decreased, the pain increased. My doctor(s) would not accept that the PMR was still alive and well in my body because the markers did not reflect that. After a year (and four opinions later), I went to the Mayo Clinic in Jacksonville, FL. Within a short period of time, the rheumatologist told me that I was one of the people for whom the markers had no meaning. She increased the prednisone, and the pain went away.
Because of what I experienced, I have often wondered how many patients have an autoimmune disease which is affecting their quality of life, and it is going undiagnosed because some doctors are depending entirely upon elevated markers for inflammation to make their diagnosis.
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@noosat1
In reply to @barry51
I have been down to 2.5 for several weeks. I wake up stiff and achy, but am putting up with it hoping it will get better. I do feel brighter and more hopeful after my coffee and toast. I am trying several different aids. Along with my good fresh organic diet, I am taking increased doses of turmeric and last week started on CBD oil three times a day. From what I have researched neither can hurt, even if they do not help. I keep hoping. The hardest part to endure is not to be able and active as I used to be. The most I can manage these days are short walks by the river or in a local park. 🙂
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