PMR

Anyone suffer from Polymyalgia Rheumatica? I'd never even heard of it til I was diagnosed with it about a year and a half ago. I alternate Darvocet with Hydrocone and the painkillers are the only meds that enable me to walk around at all; I hate taking them, but I'd have a terrible quality of life if didn't. Some doctors say it can go away, but others say it's a lifelong autoimmune disease. I'm 64 years old but I walk like I'm 90! Sometimes the pain is so overwhelming I cry out of sheer frustration. As they say, misery loves company, so if you have this condition or know of someone who does, please post any info you might have. Actually, in spite of the limitations PMR causes me, I'm still a happy person who views life as a gift. Good luck to you all.

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Hi Desianne
I hope today is a better day for you. We all know that each and every day can bring new battles to fight, but it certainly sounds like you have a great outlook on your situation.
I have heard of polymyalgia only once before.
My aunt was diagnosed with it and although she was well into her 80's when she was diagnosed, I believe she had it for many years prior to the diagnosis.
I'm recently diagnosed with UCTD and who knows where this may lead to, (or it could stay as is) but time will tell. I know what you mean about sore bones and joints, thank God for Tylenol 3, that's the only thing that works for me.
I'm currently off of work and will hopefully be accepted with "long term disability" insurance I have through my workplace.
I cannot bear having to return to work.
In the meantime Desianne, you have every right to complain, and who better to sound off too.
God Bless
Patti

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Hi Patti,

How nice of you to reply to me. My attitude is fairly good, I must admit, because I know there are far worse illnesses than PMR. I'm on disability - I had no choice, but it's all right as I was tired of my job anyway.

There are many disability lawyers out there - don't give up! They usually win.

I wish you the best!

Desianne

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Hi, I was just diagnosed last week with PMR. I am 61. My dad got it when he was 70. I am on 30mgs of prednisone to start and have pain but only take 1 or 2 darvocets a day because I don't like pain pills. It's amazing how fast you can lose your independence. I live alone and have no ins. and help care for my 90 year old dad. I have great determination to beat this. Like you said it could be a lot worse. I was being tested for scleroderma and lupus, at least PMR goes away. I have already started stretching exercises and hope to do weights as soon as the meds reduce inflammation. The only side effect I have had so far is the hyperness from the pred. I'm sure I'll get the weight gain, but I've lost 7 pounds this week to get ahead of it. What else can we do but fight.

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Hi. My grandmother was diagnosed with PMR a couple of years ago. She took steroids for a couple of years but now she is in remission and isn't taking anything.

The prognosis is good! I hope you feel better soon.

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Hi Ansti!

Thanks for your message. You mean PMR can go into remission? I'd LOVE that. So far, I've had it for over a year and although I don't need my wheelchair right now there is still a lot of pain, esp. when I get up in the morning.

I'm sorry about your grandmother but at least things have improved for her and I wish her continued relief.

Also, thanks for your words of encouragement - just what I needed today! Oh, fatigue is with me constantly; in fact , I have to go lie down for a bit. PLEASE keep in touch!

Desianne

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I had PMR for about 6 years and I am fine now.I have to say it was a VERY miserable 6 years..I was on Prednisone for the whole 6 years but I got off it entirely. Before you get discouraged I will tell you that my SIL had it a year ago and was over it in less than a year, 2 of my friends have had it and neither of them had it much over a year and more than 2 years is very unusual. It is usually a self limiting disease.

I could not take most painkillers because of my stomach but towards the end I started taking plant sterolins and flaxseed oil and they seemed to help. If I knew then what I know now, I would have added VitD3, tumeric and Omega3 oils.

I take all of them now and must say, I feel much better than I did 10 years ago! You have a lot of inflammation in your body and all of the above help to control it.

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I note that you are 64..I was 66 when I woke up one day and could not move my head or neck or even get out of bed. I also had Giant Cell Arterits at the same time so started out on 60 mg Pred..but it took me 3 months to find a Dr who knew what was wrong, so I had 3 months with nothing [except MISERY}.

Every day I thought to myself.."well maybe tomorrow will be better, " but it never was until after 5 years had passed and I started taking the flaxseed oil and plant sterolins and then I started to improve slowly..and then as I got better I added exercise and here I am at now..healthy as a horse!

You will be OK..I always remember the words of one of my HS English teachers who was always imparting little bits of wisdom to his 11th grade class..my favorite one was "This too shall pass". I just kept telling myself that and by golly..he was right. Hang in there..I know it's awful right now but better days are coming.

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Raindancer, thank you! You just gave me a lot of good news and encouragement!! I believe you and my doctor says pretty much the same thing, except for my specialist who says I'll have it for life. NOPE. I believe my regular doctor and you! Was fatigue part of your illness? All I want to do is sleep and I used to be active. My inflammation level had been 98, then 92, then 65 -- with prednisone -- then I found out "normal" is 20!! So yes, that's a lot of inflammation. You don't know what you did for me tonight - sometimes I get so discouraged, but seeing your message put me back in my usual hopeful attitude. Thanks, and I hope to hear from you again.

Desi

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Goodness, my mind is failing me, did I respond to this nice post of yours? I'm 64 but don't look a day over 80 :)

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oldvettechick, I'm getting mixed up here - did I respond to you earlier? I've had a rough day and haven't been able to concentrate very well. Taking care of your dad is a wonderfully loving thing. I took care of both my maternal grandparents towards the end of their lives and I have such precious memories of them.

You're on more pred. than I am; I'm on 15 mg/day. Raises my sugar sky-high! I hate that. I really give you credit for taking care of your dad and having to deal with your own disease at the same time. Good luck and please keep in touch.

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Desianne, Thanks for answering. I don't need credit for taking care of my Dad. It's my job. I tell him all the times that he hauled me and my friends around and helped me when I was 30 and had cancer. I owe him. I felt honored to take care of my mom before she died. I don't have children or nieces or nephews, just 1 older sister and my bro-in-law. I have to go to the PCP this p.m. Do you have any suggestions question-wise? I felt really good the 1st couple of days on pred. but now my hip is involved and I can hardly walk. I know that 30mg is in the middle for starting doses but I'm afraid he's going to raise it now. I watched what pred did to my dad after 7 years on it. My sed rate was 47 I think so it wasn't horrible but they could tell something was going on. It started in October with an infection on my fingers. Because of no ins. he took conservative route. Beginning in Jan, 2010 I noticed it was harder to lift my leg in the car and my arms were getting weaker. Also had different kinds of rashes everywhere, but not sure I can attribute them to PMR. Didn't get hip pain til this week. How did yours start? Where is your primary pain. It would take hours to explain my knowledge and misinformation from when my Dad had it, but he was and is very stubborn and when a doc. would tell him he didn't have it anymore and it was osteoarth. he would quit going to them. Being 90, he can't remember much of how it was in the beginning. I'm wondering if you can make it worse by pushing yourself too much. Did you gain weight? I've lost 7 pounds in the last 2 weeks which I'm hoping will give me a jump on it when the hunger starts. I remember my Dad gained 100 pounds so I'm really aware of that side effect. I have to say I love your attitude. My fiance died 5 wks before our wedding 12 years ago and I really felt sorry for myself for about a year, but now my attitude is Thank God I had him for 7 years, some people don't even have that. So I'm always happy to see others like yourself that realize no matter how bad it is, it could be a lot worse. Hope you have a pain free day. Dani

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oldvettechick, your message is wonderful and I'll reply to it later on. I was so happy to hear from you, as your post is full of hope and charity. I, too, was honored to take care of my grandparents, who pretty much raised me. (I must admit living with my mother was not a good thing when I got older. My stepdad had died and he'd held the family together. Once he was gone, it all went downhill and I moved out, though not in anger and not far away. Then eventually I returned to live with my beloved grandparents.) Will talk to you later when I have more time and I hope your day goes well. People on here are so nice :) This place truly does "inspire".

Desianne

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Desianne :)

I am responding to your cry for help because my friend busyteacher asked me to. I have had PMR for a about two years. I belong to a PMR group on another on-line on another site and the common thread in there seems to be that we all had some kind of trauma or a serious of traumas before we got stuck with PMR.

I am 54 now, but was 52 at the time. My son was getting married, there were huge family problems outside of my own little family, and to top it all off, I had a bad fall and busted up my face about three months before the wedding. By the time the wedding came around, I could hardly use my left leg and my right arm was very sore. I'd had a very stiff neck and shoulders for years, so my rheumy feels that I had 'silent PMR' for years and the trauma brought it all to painful head.

Anyway, after my son's wedding in May of 2008, I could hardly walk and by the time I went to see the rhuemy I have now (I saw some jerk before that, who misdiagnosed me first) I could hardly walk, but refused to use the cane I had at my disposal. I was put on pred, and got immediate relief to some degree. It felt like I had been oiled and could finally move a bit.

It's been a long road full of ups and downs and pain, but I have done pretty well. I was told this could last 2 years or until it runs it's course. I don't take painkilers expcept for the occasional Ibuprophen, which contains anti-inflammatories. I refuse to go that route. I started on 15mg of pred and am now down to 6mg and doing okay. I still have days of pain, but not as many as before. I keep moving, go to the gym three times a week when I can, and use some alternative meds to help me get by.

Anyway, I feel for you. Are you taking pred? If not, why? It's hard on the stomach and so on, but it really does work. Hard to get off, but it can be done. I know a good few folks who have done it and I'm doing it myself. You just have to reduce really slow . . .

Feel better soon. Don't despair. You are not alone in this. If you ever need to talk, let me know. I'm here for you.

Bev :)

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glad to read all the comments. i was diagnosed with pmr 15 months ago. i had a very positive attitude early on because i was told it would last a year or two and go away. now doctors are telling me it will be longer and probably have a couple of other autoimmune things going on as well (crohns, sarco, etc). the dosage of pred is adjusted, but the lower dose brings back the pain, weakness, fatigue and fever. the pred is causing cushings and diabetes. i am very discouraged at this point. i want my life back. because i have several things going on, i have several doctors who can't seem to decide what's best for me. i have shortness of breath on exercision all the time. this makes it difficult for me to get around, and certainly can't exercise. any words of encouragement would be greatly appreciated. i was diagnosed at 52 and the doctors say it's young, but does happen....like in my case.

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Hi Huckie & P1 and all who kindly answered me:

Your support has been priceless. My rheumatologist is slowly weaning me off the pred and I don't feel any different. Since it seemed not to help me, I don't want to take it as it raises my sugar very high (diabetic here). I have good days and bad days; you know how it is. But when a person has the support from great folks like you, things are much easier to bear. Love, peace and Happy Easter to all.

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Please Note: This is the former Desianne; my computer crashed and I couldn't get my regular nickname back so I added an extra "s". Luma, Tinman, Patti, Montanafontaine, please add me as friend again. Thanks so much.

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Hello Dessianne,
I also have PMR. Two years ago I was diagnosed and took prednisone for 6 months. At that time I went into remission and was pain free for 2 years until about 4 weeks ago. It came back. I am 62 and sometimes walk around like a 90 year old. I have an appt. today with a Rheumy and am anxious to hear what options I have. I don't want to take prednisone again. Surely there is something else out there to take. I take Tramadol for pain. I hope by the time you read this, that you have some relief. Just wanted to let you know that there are more of us out there. Shelia

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Wow, all these posts I could have written myself. I'm 68 and have had PMR since Oct 09. It came on 3 days after I had a flu shot which my Rhuemy said probably was the trigger. I'm finally down to 4 1/2 mgs of pred a day. When I couldn't reduce the pred without a lot of pain my rhuemy put me on Methotrexate, 10mgs once a week and that's working. When my Rhuemy told me about PMR he said DON'T STOP WORKING! The worse thing is not being active, then you stiffen up. I work 3-11 shift in assisted living and I'm better at night. The mornings are the hardest time for me so I take 1 Aleve every night.
Dessianne, please ask your Rhuemy about the Methotrexate. Good luck to everyone and keep writing.

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Hi woodsos & kobie & all who wrote me - I got the original spelling of my nickname back (Desianne - one "s") thanks to a kind moderator.

I was given Methotrexate but it didn't do a thing, I'm sorry to say. I'm weaned down to 5 mg of pred per day now and hope to be able to cease it altogether soon. I know it's a great med for many things but in my case, nope. I'm moving around somewhat better; stairs are still very difficult for me and without my husband's help I don't think I'd get up them at all. Thankfully we live in a ground floor home (I never go into the basement any more). Tramadol didn't help me either and I have no idea why as it seems to work for many. I wish you all the best - and I think it's important to keep in mind that although this disease is a terrible discomfort, there are far worse things. My attitude remains positive (99% of the time). I know how you feel and I know it's not easy to cope with this illness. But with the support of others here on Inspire.com, we can keep on giving each other the strength we need. Don't hesitate to write me if I can do anything for you. Take care! Desianne

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I'm glad to see a posting by someone who is helped by Darvocet. Until today, the only web site I found with PMR discussion groups was in the UK, and no one mentions Darvocet there. Those are wonderful websites, though! Anyway, I was diagnosed with PMR at the end of January, 2010. Starting with an injection and then Prednisone pills at 40 mg, I got down to 10 mg by early May and was feeling great - until the doctor reduced my Pred to 7.5 mg and a relapse occurred :-( . I'm currently at 15 mg and need the Darvocet to get me through each day and night. I can't help wondering what will be next, when I see my Rheumy on the 17th. The Darvocet defnitely seems safer than the Prednisone, so here's hoping I can tolerate the discomfort as the tapering continues. How are you doing these days?

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