Hello, I am new to this message board. I was diagnosed last March with PMR with very few symptoms. Some neck and leg problems. But a high sed rate. Started on high dosed of prednisone. Taken down fast and now I am on 10mg. with all the symptons. I can hardley lift my arms most of the day. My hips and thighs hurt and sometimes it's hard to walk.
Wouls really have to up my prednisone and don't want to as the side effects for me were awful. Doctor wants me to try methotrexate. Has anyone used it before and how were the results and side effects.
Thank you,
Susan
Hello Susan and welcome!
I would think as you are still showing symptoms that the doc has dropped you too quickly on the pred. From what I have read it should be about 1mg per month. From my own experience I have been dropped too quickly and now in an awful flare (seeing GP on Wednesday). My GP said I would have to go onto methotrexate if I couldn't get off the prednisolone. I have had no experience of this but a friend has been on it for some years (she has RA) and has had a little liver trouble. She occasionally has a rest from the drug and then goes back on. How she can still work fulltime as a hairdresser and on her feet all day, I'll never know: perhaps she has got the right combination of drugs.
Hope someone else has direct experience of the metho and can give a better insight.
Take care
Love Judi xx
I will look for answers to your questions too. I was diagnosed with PMR on Dec. 18. I had terrible muscle pain in my knees, hips and arms. I thought I had stressed my knees on an exercise bicycle and they were so stiff, I couldn't get up out of a chair and the bathroom was almost impossible. I bought a riser seat and that helped a lot. This went on for four months and I was going to a physical therapist which helped only a little.
My rheumatologist put me on 20 mg of prednisone and I saw her again last Thursday. I am to remain on 20 mg for two more weeks and then go down 2.5 for two week intervals and see her again on March 1.
She also gave me a prescription for methotrexate which I am to take 6 pills all in one day once a week until I see her again. I have to have a blood test every two weeks and take Flosmax and folic acid. Plus I am to go and get a bone scan.
She wants to take me off prednisone and methotrexate takes a while to work. Sometimes up to two months. So I guess I will be doing all of that and see then if I get off prednisone on March 1st.
I do have glaucoma, so that is why the thinking of being off prednisone. Seems that prednisone side effects are worse than methotrexate???? maybe in small amounts it is not too bad. But, one never knows just how much one will need to take.
I have had achy sacroiliac joints for years, so I don't know if it finally came full course when I stressed my knees or what. Then I stressed my shoulders by lifiting myself off of chairs, out of bed and turning over in bed.
I couldn't believe how fast that prednisone worked. I was pain free in a matter of two days, except for my right hip joint. I feel really well on the prednisone, but evidently in the long run, I can't say on it. Hopefully, methotrexate will be more gentle on my system.
Bless you, Starbright. So glad you're feeling better. Your history sounds about like the rest of us. Start at 20 mg and reduce gradually. Have a great day.
Thanks for the reply. Betsy , let me know how you do on the methotrexate. I am taking a cholestrol lowering drug which also attacks the liver.
Don't know what's better up prednisone or the other.
Judi let me know what your GP says. I am also in a big flare up. Have been for a few months.
Thanks,
Susan
Hi,
I am new at this so please bear with me.Let me tell you a little about what has happened to me in the last 18 mo.
First of all I was having pain that went down my left leg etc. So this specialist said it was my hip and it needed to be replaced. Well I had it replaced and it wasn't my hip. The pain wasn't any better. But I was doing pretty good until a year later I had a real bad fall. It seems like after the fall I just kind of went down hill. This was March of 2006. So in July of 2006 the dr decided I needed back surgery. I had a fusion in my L4 & L5 vertabraes..I guess that is what they are called.lol!!! Two days after surgery they discovered I had a blood clot that went to my lung So I had 2 units of blood. Then I was sent to a hospital closer to home for in patient therapy.. This was one week after surgery. I was there for 4 days and had terrible pain and turned black and blue in the hip,stomach and butt area on my left side. After 2 days not knowing what to do with me they discovered I had a reaction to cumadin(sp). So they started me on another transfusion and sent me back to the hospital where I Had 2 more. I almost died because they didn't know what to do with me. Finally they decidedI needed a Greenfield filter. So after another week there I was sent back for more therapty and then sent home of therapy Then I had home therapty for 2 mo nothing helped. Now we get to the possible time I may have devoloped PMR. While in the hospital I started having really bad pain in my right arm,above the elbow, that went to my shoulder. After I got home, after 24 days in the hospital and PT, it got worse and worked across my shoulders into my neck and down the left arm. Mainly the arm pain is just above the bend in my elbow. After many tests the dr now thinks I either have RA or PMR. My question is I won't take predizone. I have seen what it has done to family members while they were on it.Is there anything else I can take that has little side effects????? My pain now is also in my legs, mainly my left leg and my feet, mainly in my left foot. I am on a mild pain med but I can't see where it helps much at all. In the last 6 mo I had one day I felt decent but that night was terrible. Any suggestion at all I would appreciate. I am still waiting for he dr to tell me what to do. Trying to get any results down here is like pulling teeth!!!!
Sorry for being so long winded!!
Thanks!!!!! Mary Lou
PS.
I forgot to tell you my age. I am 73 and had jus
Thanks..Mary Lou
| welcome to club.....am so sorry for u and I have no solutions to offer, I am 74 and have had arthritis????fibro, polymyalgia, osteoarthritis diagnosed over the past 5 years...was on pred for 1 and 1/2 years, finally off it last month....Since Oct. I have had severe pain in shoulders, neck, up back of head......Last May & Sept had cataracts removed....I am now on Advil, went for physiotherapy (no results)...also have had two back ops (lumber lower) over the years. right now I am really fed up and begining to think I will not overcome this pain in my lifetime.....sorry to be negative but I certainly know how you feel both in body and mind....I don't think they know what is going on from GP, Rhumatologist, eye specialist,,,,,,think I am about ready to go to psychaitrist (sp)...am so tired of it all......my sister-in-law has been down this road for a long time, now she is being tested for Cushing Syndrome......I think you get this from pred. use....anyway my prayers go out to you and hope you get some good news from someone of this forum......take care.....from ROSE from Canada...god bless |
This is why they call it practicing medicine! Personally I'd just as soon they practice on other people and just get it right when they work on me!
Mary Lou I'm sorry to hear you are in such pain. Have you tried Aleve? I'm not sure if you have clotting issues and if you do you probably can't take Aleve but it's what's working for me right now.
I will pray you can find some relief.
Daisyuc
Thank you to both Rose and Daisyuc!!! I am happy to hear from someone that doesn't think I am crazy when I tell them about my pain and how it started. As for taking Aleve no I haven't and if it has aspirin in it I probably can't. They even cut my daily adult coated aspirin to baby aspirin after this happened. Now the dr that ordered the blood work etc won't get back to me with the results. Last week he said they hadn't taking my sed rate so intil he got that he couldn't say what he thought it was. Well he had it just didn't see it. So to make a long story short he has known he has had it since last Friday and nobody has called or answered my calls. Now this is supposed to be a good dr. Granted just a GP but good. Do they have any idea what it is like not knowing what is wrong with you? No, or they don't care!!!!! My nerves are about shot!! He tested me for a lot of things, some he ruled out but it depends on my sed rate to whether he thinks it is RA or PMR. Would you say he is guessing??
Thanks girls for the support and the best of luck to both f you!!!
Mary Lou
I hurt so bad today and during the night. My arms, shoulders, thighs and butt. This is so miserable.. How much advil can I take durning the day with prednisone? I am only on 10mg. as the side effects weren't great on higher dosages.
The doctor is not too informative. He gave me Clinorill to try. It didn't do much good. Also he wants me to try Methotrexate. Maybe I will have to.
Susan
Hi Susan, I asked my GP for darvocet for bad days. It helps me so many times. I couldn 't work some days if all I had was advil. You can't take it everyday of course or you wouldn't know if the prednisone is doing it's job. Darvocet, they say is mild, but it surely helps me through the flareups. If your doctor won't give it to you, find one that will. Good luck.hi guys
I'm 67 yrs. old and have been diagnois with PMR. He has me on prednisone but has told me to decrease as soon as possible. Which I have. He started me on 20 mg. a day. within a few days I decreased the pills by 8 or 40 mg. a week. I take an advil in between, it seem to help. Last week I decreased again 75 mg. a week. This is not doing so hot. I have pain again. Not as bad but it is there. As i said in a previous letter, I have had this before, or so I think this is what I had, at the age of 28. Lord so much easier to handle at that age. As for Mexothrexate. Hubby took it for Arthritis. It didn't seem to help him. He is not on Enbrel. That has worked wonders for him. The side effects are so horrorendous. The doc put me on Boniva for osteo but I may be having massive side effect. Couldn't really tell as other things were happening at the time. Thinking twice before I go on that pill. Trying to eat high calcium foods. I thought this disease went away on its own sometimes. WHEN!!!!
Sorry this is so long. another question before I go. Do any of you have swelling the legs?
Thanks
Anna
Hey Anna, I don't quite understand how many miligrams you're cutting at a time, but can tell for sure you're going way too fast. That's why the pain is back. From what I can tell, most of the folks on this forum start with 20mg, then go down 2 1/2 every l to 2 months til you get to 10mg. Then, you only go down 1 mg per month down to 0. If you cut it too fast it will come back with a vengence. It takes a long time, like a year to 1 1/2 years. Listen to me, I've turned into a doctor, now! Don't mean to be pushy. It just hurts me so badly to see how people suffer becaue their doctors cut them too fast or rely entirely on sed rate for a dxsis. I can see a distinct pattern from reading posts on this forum. We are all just like you, awaiting the magical disappearance of the DFH we have. Disease from hell.I was started at 40 for three days then 30 for three days 20 for a month and then 15 where I stayed for awhile. But I had very littel symptons then. It's hust now. The doctor said sometimes it takes weeks for symptoms after your sed rate starts to elevate.
Susan
hi
It's me again. I guess i kind of confused the issue with the pred. I will try to clear it up. The doc put me on 20 mg. a day which is 4 pills consisting of 5 mg each. After a week I started skipping a day every 3rd. day. In other words I would take pred for 2 days and skip one. Last week I went from 4 pills to 3. So now I take 15mg. for 2 days and then skip a day, then again for 2 skip one. I have noticed that the pain comes back on the days off pred. I try to make sure I take an advil on my day off the pred. I do want to get off this medication as soon as possible. It is raising hell with my osteo and my sugar. I also have a breathing problem which as of now after 9 yrs is still undiagnoised. Mystery woman i'm called by the doc. OH give me a break.
thanks for the quick answers
Anna
hi
i'm still the same person as above. i have a lap top and a regular puter and for some reason couldn't get on my lap top with the same name so had to change. so either one of these names is me.
lord it sounds like im getting senile.lol
In answer to your question about swelling legs. I do if I sit to long, walk to much and some times not even have to do anything. My one leg gets worse then the other and my one foot also. I do have varicous veins so I dont know if that is the problem or not. They not only swell but are very painful some times!! Heck I don't even know I have PMR!!! It may be RA. I wonder how some of these dr's ever made it thru medical school!! If you don't know the problem admit it and send me to some one that might know. Might is the magic word!!!!!!lol!!! I also have a problem , not all the time, but a sore spot below my shoulder blade that feels like someone is sticking me with hot needles. Anyone have that problem?
I pray 2007 will be better for everyone!!!!! I know I am old but darn it my problems were nothing until a year and a half ago. Maybe 2 years because my back was giving me fits and they said it was my hip.
Here I am being long winded again!!!!! Try and have a good day!!!!!!!
Mary Lou
hi
Just me again. Well seems 15 mg for two days then none for one day is not working. Wake up with a lot of pain in arms and butt. So yesterday went back to 4 or 20 mg. I do so want to get off this stuff. I hate taking pills. I feels like i'm anchored to a pill bottle. today i'm very tired. It seems I could go back to bed and sleep the sleep of the dead. I wish it would go away. It took over 2 yrs. last time and I was young then. Course at 67 with one foot in the grave and the other on a banana peel I should welcome the pain.lol OH well things could be worse. Take each day as it comes and handle it. Have to go to a surgeon on the 23 of January for the swelling in my legs. They are trying diagnois Lymphedema. I know my veins are all right so that is a good sign.
OK enough whining.lol I hope you guys are doing better. Thanks for the info Brich and Mary Lou. i'm so glad I found this message board.
Anna
Anna,HI guys
Well went to my surgeon yesterday. I was so sure he would say I have to wear those darn support hose for a while, which by the way I will have to do, but I also have to have a vein collapse. Wasn't what I expected and is a total bummer. Now this doc does not know that I was dx with PMR and that I was on pred. I just wish just once these doctors would talk to each other and let each other know what in blazes is going on. It is not as if my two docs office are that far apart, probably a quarter of a mile. They both go to the same hospital each day and quite sure they see each other. Of course i'm not there only patient but GEEEEEZZZZZ. Oh well one day at a time.
How is everyone feeling? I hope we are all having a good day.
take care
Anna
hi everyone, Iam 43 years old and have had pmr for 1 year. I was on prednisone for 9 mths. I am off prednisone now and can barely roll over in bed. My primary md diagnosed me and put me on prednisone 60mg.I felt instant relief. My symptoms came back when med below 20mg so he sent me to a rheumatologist. I have been seeing her since august, but she doesnt believe I have PMR because I'm under 50. She wants to send me to a neurologist. I'm wondering if there's anyone else out there with PMR in their 40s. I'm also wondering if anyone is controlled on motrin. thanks, cathypHi Cathy!
If you choose look at the last six months and choose page 3, you see a thread called Am I the youngest? There has been a discussion before that the central arthritis organizations should go out and tell doctors that there are many under 50 with PMR
Ragnar
Hi, Cathyp,Hi
Is motrin ibuprofen? If so, then no, but I do take another NSAID, lodine for my RA. Before the PMR it was "just" keeping the worst of the RA at bay (been on a whole gamut of NSAIDS in my time, felt best on celebrex before it was banned). Now nothing is doing anything except the higher dose of prednisolone and dihydrocodeine.
BTW I was dxd last Oct aged 47.
Hoping you are having a grat evening.
Love Judi xx
Hi Judy, If you don't mind my asking, why do you say something neurological is going on? As I said , my rheumatologist wants me to see a neurologist. cathypHi Cathy
My neurological symptoms (burning, numbness, stroke-like episode, tremors, ataxia, slurred speech, optic neuritis, legs not doing what you tell them to do, and latterly spasms so violent in my legs that they fold up on me so I fall to the floor, spasms around my midriff, sometimes so tight that that I can hardly breathe) all started long before any PMR symptoms started. I had RA dxd about 5 years ago as I was having a lot of problems with my ankle and knee. So I saw the neurologist long before I saw a rheumy. As I was being investigated for SLE, when I had my stroke-like episode, I saw the rheumy at the hospital but apart from some vasculitis changes in the brain around my speech centres and motor centres he (the rheumy) said it wasn't SLE but probably MS. When I did get an MRI which showed some white areas the outcome was "well, we don't really know, wait and see" and the geriatic specialist (I was 43 at the time) I was under as my face was numb and I showed stokelike symptoms said "it is an expression of my inner psyche brought on by stress" (I nearly nutted him but was too shocked to react). I've had a lot of things going on at the same time: at least four different "diseases" - vasculitis (I still suffer from phlebitis in my leg), RA (very active at the moment), PMR (newly dxd but may have had it for 5-6 years) and (?) MS which I may have had since I was 15 when I showed the first symptoms of visual disturbances.
So I am a bit complex: mercifully all my gynae problems have been resolved with a total hysterectomy (instant menopause at 40) and no HRT as I have a history of pulmonary embolism. Through it all I have maintained that I am upright, living, breathing and praising, so I don't need for anything else. I am thankful I am alive and able to work and look after my family, only the Lord knows how I manage it some days.
I am interested why your rheumy thinks you need to see a neuro. Does your rhemy specialise in PMR or is he a joint man?
Hope you are having a great weekend. Beautiful sunshine here, blue skies but cold (6 deg C). Going to be a big frost tonight. Brrrrrr!
Take care, Love Judi xx
Boy Judi,
Judi,
Have you ever been bitten by a tick? If so, have any of your dr's ever considered Lyme Disease? I know that Lyme can affect a person's brain and quite frequently MRI's show white spots. Lyme does a lot of things, really, and mimmics almost any disease. Very few dr's are really knowledgeable about the disease and there are probably thousands who go undiagnosed or misdiagnosed. In a health system where one has to get permission from one dr to see another dr, I don't know how one would ever get diagnosed correctly, unless he was to see the dr while the bulls-eye rash was present, and if you were bitten by a tick, it sounds like it might have been many years ago.
Just a thought.
Faye
Hi Faye
I can't ever recall being bitten by one, though my eldest daughter was a few years ago. I'll get her checked out as she has been having some neuro symptoms and joint pain recently.
Thanks for that. I'll look into it.
Hope you are having a good evening.
Love Judi xx
Judi25
Have they check you for Scleroderma or Scleromyxedema. I hope they find what is wrong with you soon. It is not fun to suffer.
Anna
It is me again. Surgery didn't go thru as I came down with cold symtoms so this is put on hold for a bit.
I have a questions or probably two. Does PMR have symtoms that effects your breathing? Does sleeping pills also have side effects with pred? I would ask the doctor but would get that " gee, I don't know". I went to the doctors the other day and found out that when I was 32 (so many years ago but seems like yesterday sigh) the doc was trying to dx me polymyositis. I did not know this, but the pain sure feels almost alike. He was suppose to have muscle biopsy taken when I had my gallbladder out but forgot and didn't tell my surgeon. It was all right with me as the pain and the disease was going away. I was on pred at the time also. I would get inflamation in certain areas, it would real warm and swell, the pain would be unreal. It seemed like the pain had to peak and then it would start to go away. I have not had this with this pmr.
Thanks for the help on the questions.
Anna
Hi Teeger, sometime when I take deep breaths in, I feel the PMR. It feels like flu without the fever...like your lungs are stiff too. I've always said I think it goes all the way throught your body.
Anna and Betsy,