This is supposed to go away in a year or two. I would just like to compile info on all of us on this forum. Seems to me it lasts much longer. I don't remember hearing from anyone who was well in a year.
I've had it 2 years, been treated 15 months.
Thanks to everyone.
Hi Betsy
I have had it since June 2005. Now I am down on 5 mg per day and have a hard time trying to get below without having fatigue. Have been on 5 mg for a year.
Ragnar
Hi Betsy,
My symptoms started February 2006, was diagnosed June 2006 and started prednisone June 2006. I am down to 5 mg a day and will continue to drop 1 mg a month.
Each time I taper, I do experience some mild stiffness and sometimes a little depression.....but it all adjusts. I WILL continue to taper and get off this lovely prednisone.
Janet
I know of 3 people that have had their PMR go away! One was 1-1/2 years, one was 3ish years. The doctor that my family had 20 years ago for many years, got PMR, was treated the typical prednisone routine, and his is gone. So, for those that have had it longer, I am curious if there are other health conditions going on. ?????
Hi Betsy, First symptoms Oct 05...diagnosed Feb 06 so by my calculations 20 months. Been on 10mgs Pred for 18 months. Starting to reduce to 7.5mgs and symptoms are starting to come back. My GP told me I was not atypical (had to look that one up in the dictionary)so will have to play the waiting game. Like you its my shoulder giving me the most trouble also this is where I first got the severe stabbing pain. Not as bad as then, so here's hoping. I have spoken to a lady in my home town who is still on Pred and has been for 8 years! She is a lively lady in her late 70s and is out and about on good days and a recluse on bad days. Lyn
Lyn
I found the word atypical in the Wikipedia dictionary. Visit http://en.wikipedia.org/wiki/Atypical_antipsychotic
Ragnar
I think that may be a confusing question for some, as me.In August 2006, I rode my exercise bicycle for a half hour. Had not done that for a long time. I was walking about four miles a week. Was too hot to walk so rode the bike. The next day I was stiff. The next day was stiffer and finally in a couple weeks, my knees hurt so much I couldn't turn over in bed, so I raised myself with my arms and then my arms started to hurt.
I was going to a physical therapist because my back was hurting too. I had told my regular doctor the end of August that I could hardly move. She told me to take some aspirin, Motrin, etc.
The first of Nov. I went back and she said I might have PMR and we made an appointment for the rheumatologist. Couldn't get in until Dec. 18. She gave me 20 mgs of Prednisone and in two days the pain had all gone away. Then a catch in my back came about two weeks into the Prednisone, but went away in about four days.
I'm on 2.5 now of Prednisone and will start 2 mgs for a couple weeks and then go to one.
I might have had PMR for a year or two, because my lower back felt like it had been beat with a chain. Don't know how else to describe it, but that bony part was tender to the touch.
Wonder if I will one of the lucky ones and it goes away after 18months or so. Mary
My pmr started in early Sept '06. Am 70y/o with no other problems, i.e., RA, lupus, thyroid etc. Started on 30mg prednisone when sed rate was in the mid 70's in mid October and am presently on 6mg. Last month when I saw the rheumy the sed rate was 17. I said maybe if I am one of the lucky ones it will be gone by next year. He said it may be sooner...maybe that was just a psychological ploy but it sure helps to feel postive. I sure have a rough few weeks after I taper down a mg. Then just about the time I feel halfway decent it is time to drop again...can't wait to get off this stuff. I'm 62 and Symptoms began November 2003, (1 week after a Hep. B Vaccination).Well, I guess I feel somewhat better. We all seem to be within the 2 year range except Kiwilass2, bless her heart.
Here's the consensus:
name &n bsp; 1st symptom ; 1st treatment mg now
RDSwede ; - ; ;23 mo &nbs p; 5
Puffy & nbsp; & nbsp; 15 mo &nbs p; 11 mo &nbs p; 5
LynM &n bsp; &n bsp; 20 mo &nbs p; 18 mo &nbs p; 7.5
Kewanee ; years 5 mo &nbs p; -
Starbright &n bsp; 10 mo or more 6 mo &nbs p; 2.5
Gmama & nbsp; 21 mo &nbs p; 20 mo &nbs p; 6
Kiwilass &nbs p; &nbs p; 3 yr 7 mo &nbs p; 3 yr 4 mo &nbs p; 8 (sero negative RA with polymyalgic features)
B Rich &n bsp; &n bsp; 22 mo &nbs p; 15 mo &nbs p; 5
Results:
1 male, 7 females have PMR. The medical community did get this one right. Many more females than males have it.
Symptoms of females all started between Aug and Feb,mostly fall months, but symtoms of male started in June ( I think this is very interesting and wonder why that it)
We all currently take between 5mg to 8 mg. Kiwilass takes the highest dosage of 8 mg, but has sero negative RA which differentiates her from the rest of us.
If the medical research is true, Swede will be well in one month, Kewanee in 15 mo and the rest of us somewhere in between. There now, don't we all feel better?
I know the American Medical Assoc. will just be clamouring to put this info in their journal. Well hey, it's just as accurate as what they have in there now, right?
Here's a key thing: The people that did get well are most likely not still participating in the forum. I wish they were, it would be an encouragement. Most likely, they are out having a painfree life instead of compiling wothless information like this. Nevertheless, I am encouraged by what you all shared. Thank you. There is still hope for us. I pray for healing for each of us and freedom from this awful pain. Love
Well, that sure didn't all come out in understandable rows like I typed it. Dang! It was really impressive too.WOW!! Thank you, Betsy...this was was very informative, interesting and encouraging.Boy Betsy,
Thank you all. I don't know why it came out all jumbled. Some things that were supposed to be words didn't spell anything. Knitwit has a good idea about sharing with the medical community. But then, you know how they are. If we didn't do a certified, double blind study which we hermetically sealed in a amayonaise jar for 7 years, it wouldn't be acceptable. I've often wondered if rhematologists ever read these forums. They would find for one thing that much younger people than they think are suffering from PMR
I was surprised to find that all but 1 of us is still under the two year mark. My nurse practioner told me that all their patients were well in one year except two. One took two years and the other relapsed. I hope she's right.
Knitwit flawed my theory that men get PMR in the summertime while women get it in fall or winter. She and Swede both presented in June, but then she has degenerative disk problems too. So, we don't know exactly how to count that. Maybe we will hear from more folks. Georgaianna, Rose, Sharon, where are you?
I'm flying out to NYC at 5:30 in the morning to have the greatest mother's day weekend ever. Hope you all will be relatively pain free so you can enjoy it, too. I did remember to pray for all of us last night. Hope you did too. Til next week, love to all of you.
Hi Betsy
I mentioned that I was diagnosed in June, but it all started when I was in Athens, Greece in the beginning April when I felt lousy and got a bad cold. The cough lasted for almost two weeks. My guess is that I had a virus. It took until the middle or end of June to get the diagnose. When in Athens, I went up to the Akropolis one morning, because I probably wouldn´t have made it in the afternoon. Now I have mowed the lawn with an electric lawn-mower that I have to push. I have to do it in 5-10 minute rounds as I get tired and sweat very much.
Hope you have that great weekend that you hoped for!
Ragnar
Betsy and all,Hi Betsy:
Mine started in March 2006 with pain in hips, girdle muscles, arms, pretty much everywhere. Started out on 20 mg prednisone and now down to 5mg (maybe--pain in shoulders very bad!). I was 52 when dx. I, too, am praying this goes away YESTERDAY!!!
Good luck with your survey.
Marla
I was diagnosed at the end of Feb 2006, several weeks after the symptoms started. I had begun walking the dog up and down hills in January, started getting stiff hamstrings, which progressed to stiff hips. At first the doctor said osteoarthritis, but I knew that OA shouldn't make me feel like I'd been hit by a truck. I could barely turn over in bed, or wash my feet in the shower, and my arms started getting really stiff - so I'd found a description of PMR and went back to the doctor, but as soon as he heard my arms & shoulders were involved, he said "Polymyalgia".
Today is my 57th birthday, so I was 55 at the time of diagnosis. The highest daily dose of prednisone I've had is 15 mg. I was down to 4 mg. last fall, had to go back up again due to getting migrating inflammation in my wrists & hands in Feb., and am now reducing from 11 to 10. So far, so good.
I started in mid November 06, aged 59. It started suddenly the day after aI had a knee operation in august 2000. In september I got really stiff in shoulders arms hips and legs. Turning over in bed? Forget about it! Washing my hair? nope! Dressing? nope! Getting out of the bathtub? Nope. Thank god I had a husband to help. Diagnosed with PMR. Started at 30mgs pred. slowly down to 0. Took almost 2 years but it went away. July 2006 my hands and wrists became stiff and painfull but sed rate normal. I wake up a little stiff nowadays but in comparison with 2000 it is nothing! Aleve helps a lot!
So I am one of the people that had it and went away. I truly believe ALL OF YOU are going to beat this just like me!
Hi Margaret
Thank you very much or the info on your tapering experiences. I had a feelilng this next drop to 5 was going to be a bit harder, and then probably harder still as the proportion increases. I also have the 2.5 and 1 mg and will probably end up doing it a bit more slowly like you are...I sure don't want a relapse and have to go back up. My rheumy is pretty flexible too, thank goodness. I am 71 and retired but take care of my little 3 year old granddaughter almost every day..have had to cut back a bit on that, only 3-4days a week now. She will be starting preschool in the fall so I need to hang in there a bit longer. Ironically, and hopefully, I will be doing even better by then...and you too..see you at the finish line!
Thank you, thank you..I get very discouraged. I am in my 7th month.I really have got to believe this can be beat-or at least tamed. I am at 9 1/2 mg-reducing 1/2 mg every 3 weeks. Tell me your decreasing method. And did you gain weight with the predisone? And, what about the weight and please say that it come off--but when????I just now am having fatugue issues. My sed rate is 11 as opposed to the 46 in November 2006..
So glad you are doing "well" looking forward to the time I can say the same.
Lonna
Hello All,Lonny ....I went down, when I got to 10 , 1/2mg every 2 weeks. I did always take less than needed because I was so scared to get osteoperosis (despite being on fosamax) so I suffered a lot for the 2 years. When I finally reached 1 mg it suddenly went away. I did have continueing headaches for 6 months (thinking withdrawel form pred?) I remember going to another doc for my headaches and he could not believe I have PMR at 49. He was such an *ss. Looked at me if I was crazy. He said...no way you had PMR at your age it must have been something else.
Regarding weightgain...I never gained an ounce. Just my face was a little rounder (and went back to perfectly normal when I was down on a low dose.) so I have no advise for you as to how to control that. I did not get hungry from pred as I have read a lot do. I guess controlling one's cravings is a must.
Knitwit....I doubt pred would have fastened your cure. Pred is like a bandaid not a cure. PMR goes away with or without pred so cannot see it having made any diff.. Or...maybe I am wrong.? Hate those insurance companies though!
Reni,
I know Dr. Bennett if it is the same that was at the Portland, Or. Health Sciences Center.
He was at the Univ. when Mt. St. Helens blew her top.
He is the one that spearheaded the Fibrositis studies, as it was called, research there. I was a participant in one of those first studies.
If he diagnosed you with anything but Fibro. that is a good diagnosis for sure and you are doing well to get it.
Doc's that do studies seem to never depart from what they are trying to establish.
Fibro. can be a wastebasket diagnosis and just given to so many so easily when they don't know what is going on with you and labs are pretty much clear.
Back then in the 80's Fibro., with Dr. Bennett, had not grown to what it is now. They have stuffed everything into it so now the 14 criteria they had, has grown to include almost every symptom of every disease you can think of.
I so respect Dr. Bennett for not having a narrow mind in any direction but looking beyond what was his personal interest.
What is the hypermobility thing about? I don't know what that is.
You know I've wondered about the other autoimmune disease connection too.
I have Sjogrens Syndrome. Have been told Lupus, but I don't think so, unless it's the neuro./muscular system.
Something else attacking my muscles and nerves maybe?
I was so elated when I saw you speak of Dr. Bennett and Portland. I miss it there but family was in NE.
Maybe someday I'll return.
I've seen people go there and not get the good med. attention you did. Good, glad you did and that you got in to see Dr. Bennett in four months!
It didn't used to be hard to get an appt. Lot's more people I guess.
Best Wishes Reni,
~Kewanee
Kewanee,
Yes, it is the Dr. Bennett at the Oregon Health Sciences University. I tseems that my primary care dr. was treating me for fibro for about a year, without ever telling me that's what she thought I had. So many of my friends, and many with fibro, kept asking me if that's what I had. Somehow I knoew it wasn't. And when Dr. Bennett came in the room to examine me, he just looked at the extensive form I had filled out and said, "You don't have fibromyalgia." I figured with him being the head of the rheumatology dept., and all the work he's done, he outgh to be able to ferret things out, so was very blessed to have been able to go there, and especially blessed when he came in for the consult. A friend of mine who has fibro, said I was very "lucky" to have gotten to see him, as he was semi retired even at that time.
Hypermobility syndrome is a condition in which the joints are very mobile, to the extreme. Thank goodness my knees aren't involved, but I passed 6 out of 9 criteria for it (pretty good for my "advanced" age, as things have gotten stiffer as I've aged, but still hypermobile compared to teh general public). It's always been kind of a paradox when I go in to the dr. and complain of stiffness. They do all the tests, and I can bend so much farther than most, that they think I'm nuts, and nothing is wrong. I do think that is part of my aches problem, because my muscles have to work harder to support the overloose joints. One can be hypermobile, without having hypermobility syndrome. The syndrome tag comes when one has pain with the hypermobility. Aren't we all learning a lot from this forum?
Reni,
What a nice invite. I loved parts of Oregon and I even learned how to say it right.
I liked Bend and the three sisters was it called up there on the way to Portland....those mountains?
I remember prarie dogs, cattle and sheep....and Rose's restraunts .
Small world isn't it?
~Kewanee
Yep, and there is a Rose's in Sherwood where we rented a hosue before moving to Aurora. Not to far from here, and on the "backroads" drive from Sherwood to Wilsonville, on a clear day, one can see a gorgeous view of Mt. Hood, Mt. Jefferson, and Mt. St. Helen's. We can't see Mt. Hood from our house, but if I walk a block or two, I can spot it. It's wonderful. So, any time, come on over!!
can I come too?
and if anyone wants to come to Colorado.....this is my view from my house!
http://smg.photobucket.com/albums/v391/dutch1952/house/?acti on=view¤t=gladeglutch016.jpg
Thank you Reni. I remember the Willamette Valley and I used to drive into Portland from Forrest Grove.That topped hill is "the sleeping Indian"
horses???? sure look! http://smg.photobucket.com/albums/v391/dutch1952/house/?acti on=view¤t=Dsc05553.jpg
Marianne,