Hi im 65 female been diagnosed with polmyagia rheumatica.
Taking steriods to help the symptoms but the side affects not nice.I am 55 years old and was put on prednisone for PMR/Giant Cell
Arteritis the beginning of July. I got immediate relief, but worried about
the side-effects too. I started at 20 mg, but could not get total relief in
my chest area- it was still uncomfortable taking deep breathes and
stretching although shoulders and neck were better (had alot of testing
for heart related problems to be sure). I went up to 40 mg for awhile but
did not really feel that much better so have returned slowly to 20mg and
am now going down about 1 mg a week. Am at 16mg. Getting a little
stiffness back in shoulders, but hope to go down a bit further without too
much increase in discomfort. Yes, it does increase your appetite, so you
have to accept some hunger pains or increase your excercise if you want
to maintain your weight. I feel my face is a bit puffier and I am seeing
more facial hair. ( I also can perspire heavily at times and I had not been
having menopausal hot flashes. Has anyone else been bothered by
sweating more than usual?) My doctor says the weight challenge will be
easier as the prednisone gets reduced. I find that heat from showers and
heating pads help with the shoulders and chest discomfort when I am
especially stiff. When I saw Teri Garr on the "Today" show yesterday
talking about her life and diagnosis with MS, I liked her choice of a book
title and philosophy; "Speedbumps": When you come across those un-
welcome and un-expected bumps in your path you first "slow down, then
you just have to go over it, and then you have to keep on going". So
good luck to you.
Hi,
When I was diagnosed with PMR my dosage began at 60mg. I am now down to 8mg. The doctor has me decreasing 1mg every 2 weeks until I get to 5mg and then I have another checkup. The hotflashes/sweating has been awful for me. Sweating from head to foot. I was diagnosed at age 49 and am just 50. I also am experiencing some puffiness in my face. I have been able to somewhat maintain my weight but it has been a real struggle. I have difficulty with my right shoulder and arm but if I take advil it really helps so I am hoping that with the decrease in prednisone I will maintain the comfort level I have and that the PMR does not kick in again. My neighbor got down to 3mg and her PMR acted up again so we will see. It is interesting to hear how all of your doctors are treating each of you and how they set up the decrease in medicine. I find it interesting also that each of us started at different dosages. My doctor keeps telling me that I must decrease the prednisone very slowly or the symptoms will come back and I will then have to start all over again with the treatment so I have been very careful to do as he says. My thoughts are with you all and I am so glad that there are people posting because it really helps to talk to others and share our stories. Thanks.
Hi,.
I am still trying to figure out what is wrong with me, but ih ave a lot of these symptoms, and rpednisone really helped while i was on it. but i have other strange symptoms, like tightness in my feet and hands and my upper thigh and groin. Do you have these symptoms at all?
My name is gail. I am 55 and was diagnosed with PMR last July. I started on 20 mg prednisone and am now down to 12 1/2 mgs. I have a ferocious appetite and I can feel the weight piling on. My symptoms are identical to everybody else. Nyali, thank god I was not imagining things with my feet. From the day I was diagnosed with PMR my feet have been so sore. It feels like the soles of my feet are badly bruised and it really hurts when I walk. I still walk anyway because Ive got to try to keep the weight down. I have been on other message boards and you are the first one to mention your feet. Now I know I'm not alone.
Take care everybody, I'm still trying to figure out how to use this message board
Gail
I am also glad to read that others have had foot pain. I went to the doctor many times complaining that the bottoms of both my feet hurt and my arms and legs felt like the veins were swollen.
My sleep apnea doctor thought I had fibro and I was sent to see a Rheume Doc. Long story short I got a very bad ear infection that went to my mystoid so believe it or not I added an ENT doctor to my list. I was put on prednisone for 5 days. All of my pain went away including my feet. I shared this with my Rheume Doc and he said even though my SED rate did not definitely show polymyagia he would try the prednisone.
I started on 20 but came down too fast and had to back to 20. I am now down to 14. I am concerned about my weight gain but on the other hand my quality of life was going down hill.
Hi,
I'm brand new to this forum thing, so I hope I'm doing it right!
I'm a 62 year old female, finally diagnosed with PMR in Jan 2005. I began with 15 mg. Prednisone and over the year went down to 5 and back up to 10 and holding my own for the most part.
About a 30 pound weight gain
Has anyone had PMR long enough to see a correlation between cooler weather and an increase in pain? I think there is one, at least for me. I keep trying to keep a good balance between activity and enough rest.
I'm looking forward to checking this forum and to see how you are all doing! The good news is that this affliction will go away from us one day (they say)!
Bye for now.........
Another newbie. I am male, 56, very athletic, intent on denying age... ah, the naivite of it all. Odd thing about my PMR is that I had minor bouts four and then two years ago, but nothing like this... The image I cannot shake is: ground-up glass in my joints. Or sand. After toughing it out for August and September, I finally got the mooshy PMR diagnosis, started at Pred 20 and am down to Pred 5 (I'm trying to impress you all with DocSpeak, not that I'm fawning over the profession. My rheumatologist (sp?), one of the hotshots in my hometown of Boston, MA, needs to be reminded who I am with each visit). I am also taking the maximum OTC ibuprofen. The prospect of two years (or more?) of this is a downright bummer. I have tried augmenting conventional treatment with alternative gigs - acupuncture, nutrients, etc. Success has been marginal at best. A good Website to sniff out red herrings in the huge alternative med industry is QUACKWATCH.com. Has anyone had success with unconventional treatments? As you look back on your medical history, have any of you had previous, minor run-ins with the condition? Nice to find this forum. So this is what a chat room is all about...
HI
I have major sweating on my face and neck. I sweat so bad that my glasses fog over. I ask my Rheumatologist about the sweating and he told me that the combination of Prednisone and the PMR causes the sweating. I have also gained 50 pounds since I was diagnoised with PMR two years ago.
Ineca
Pemi
Just read your message and discovered that you lost out on 2 counts. Firstly, you are reasonably young to have PMR, the average age being 70. I'm 55. Secondly, it effects mainly women. It is apparantly rare for a man to come down with this condition.
When I was first diagnosed last July I was determined to brave it out and not take prednisone because of all the evil side effects. However, my rheumatologist advised me against that plan because it left me vulnerable to the effects of giant cellarteritis which can cause blindness. I started on 20 mlg daily and now I'm down to 12 1/2 mlg. I have days when I feel a bit achy but mostly its quite manageable.
Probably the best advice I could give is:- whatever medication you are prescribed, google it to find out about side effects etc and dont be afraid to ask questions. I'm sure if you start bombarding your rheumatologist with questions he might start remembering who you are. Next time when you see him/her, wear a name tag. With what they charge for a consultation you deserve a bit of recognition at least.
Hope its not too cold in Boston at the moment. I'm enjoying a beautiful Australian summer's day on the south coast
Keep warm and take care
Gail
Pemi
I'm in the Boston area as well and being see at Brigham and Women's Hospital's Arthritis Clinic.
I'm 58 and in June 2005 woke up one morning with pain and stiffness. Got a diagnosis of PMR once they looked at the sed rate but they're still not 100% sure and have decided for the time being it's atypical PMR but might also be an atypical form of some other type of arthritis. Prednisone at 20 mg didn't do the job so I ended up at 30 mg/day. Went down at the rate of 2.5 mg per week and got all the way down to 2.5mg/day I gave up and had to go back up 14 mg/day where I am now but still having symptoms. Started out in muscle/tendon areas around knee, hip and shoulders - now it's mostly hamstrings and now hand and fingers have started acting up during the last week - there goes the guitar !
I've tried a bunch of alternate nutrients and am still on them but can't say I've noticed any difference by being on them but feel it can't hurt and may help in the long run including in addition to multi vitamins and minerals: Omega 3 (6 and 9), "Turmeric Force", Ginger. "Zyflamend", Astragalus, Coenzyme Q-10, "Host Defense".
Regards with "PMR in Boston",
Domino
I wish to announce to everybody that my New Years Resolution is that I am going to lose weight. I have been gaining it steadily since being on prednisone and I have been blaming it for everything (even yesterday's record temperature). I am a life member of Weight Watchers and lost about 18 kilos the last time around and this time I would like to lose about 10 kilos (its approx double that in pounds). I'm going back on the points program and I'm determined.
Yesterday we had our hottest day on record. Inside the house it was 42 degrees celcius (about 114 farenheit). Outside it was much hotter. We dont have air conditioning only ceiling fans and it was like sitting in a fan forced oven. Today is much more pleasant.
Have a happy New Year everybody
Take care
Gail
Domino, I would love to share further (a weird phrase indeed to use in a chat room). Bill Docken of B&W Hospital is my doc. He just added methotrexate to my medication. The stuff scares the dickens out of me. I am on 5 mg Prednisone daily, down from 20 in early sept., and have tried a zillion alternative medicines that have had no effect except on my wallet. I came down with this thing in July. You and I do not fit the PMR profile as men in our 50s. I am about to hit 57. I believe this is my third - and by far most debilitating - bout with this thing. Feel free to email me directly at northwester@comcast.net. Best, PemiTo all of you on the forum, thank you, I needed to hear more about PMR.
Iam 55, fairly fit from swimming and walking and in the past cycling. I have had chronic lower back pain and felt that some really long walks (about 8 hrs) that I did aggravated this problem. I slowly was walking less, unable to pick things off the floor and unable to manage work as a community nurse. I had pain in my groins, behind my knees, low buttock pain, and tingling in my feet and lower legs mostly when I lay down or sat after being up for 1/2 a day or so. I looked good standing!!!
When finally diagnosed Dec 6th I was started on prednisone 15 mgms, felt better within a few days and am now down to 9mgms. The rheumatologist found my thyroid function was low and i have now started on thyroxin.
As i had lost muscle strength and tone in my legs and back he sent me to a physio.Basic exercises that I thought I would never progress but they have been my saviour of sanity.
I am also having massage and acupuncture ( seek out a real pro) which helps enormously.
I still get heaviness in my legs and tingling in my feet and i seem to be helped with 2 panadol a day.
Interestingly I was drinking at least 700mls (approx 23ozs) of milk everyday for about the last 18mths. Wil now stop since reading the forum and see if any difference.
I am also very glad that i have not had to work recently as the exercises and the rest are helping. I do not smoke.
to all keep your chin up and work on basic health issues and keep talking on the forum. Peaches.
I am 62. Diagnosed five years ago with PMR. IN some ways feel my life ended at that point. I used to be fit and active now I never feel well and If I go down below 5mgs prednisilone feel ill and stiff. Rheumatologists don't seem to understand the feeling ill. One even told me if I had it or longer than two yeras it wasn'tpolymyalgia. I am just in the middle of another bad bout hence the doom and gloom. Normally I do manage to stay reasonably cheerful I have a great deal of sympathy with those whose rheumatologists don't recognise them.Hi, Sonia - I sent you a private message yesterday, but will add something. This board has not been very active lately.
I've been doing some research on the internet about DHEA and it appears that declining levels of DHEA as we age may have something to do with the onset of various autoimmune diseases, such as PMR. DHEA, a substance naturally occuring in our bodies, is quite common in the US, touted as an "anti-aging" supplement. What triggered my interest was a note that someone with PMR achieved a complete remission by taking supplemental DHEA. Anecdotal, but worth investigating. Also, studies have been done with Lupus (SLE) patients - taking DHEA supplements has enabled many of them to reduce or eliminate their need for prednisone. No such studies that I'm aware of for PMR, but I'm trying DHEA myself (too early to say - only a week) to see if it will help me reduce my prednisone dosage. I'm on 7 mg., down from a max. of 15 mg., and have been on the medication since the end of Feb/06.
If you are interested in some of the information I've found on DHEA, let me know and I can send you links or copies.
HI All newbie here!
I was 49 when diagnosed. Hit me like a train. one day healthy next day could not even comb my hair or put my sweater on. Turning over in bed was impossible....etc etc. Arms and legs mainly.
Had it for 2 years. Was on pred for that long. 2.5 good years followed. Now it is slowly creaping up on me again although the stiffness in my arms and legs are less than before. Now however my fingers and wrists are much more involved than before. Going on 15mg pred and will try to come off it fast. The pred gave me horrendous headaches (had GCA biopsy aswell (negative)). I know so well what you all are going thru. I was so happy when it was gone was on top of the world till 2 weeks ago when I felt it again
if anyone want to talk email me (since i am a "experienced"
Like most people, you've probably experienced stiff and sore muscles occasionally — maybe after a strenuous hike or a weekend of yardwork. Now imagine feeling that way all of the time. That's what it's like to live with polymyalgia rheumatica (PMR), an inflammatory disorder that causes widespread muscle aching and stiffness, primarily in your neck, shoulders, upper arms, thighs and hips.
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