My husband was diagnosed with pmr was on pred for approx 18 months reducing ovdt time to 1mg then none. He was fine for about 6 months abd then started having similar symptons painful walking backache and dizzyness. Blood tests results were clear of pmr. Now on Neurontin 100mg, not helping much. Has anyone else out there had similar experience following pmr and pred?
It isn't uncommon for PMR to recur within a few months of stopping pred. Nor is it particulalry uncommon for the blood markers not to rise again. If it is PMR back then Neuronitin won't help.
There are no "tests for PMR" - it is a clinical diagnosis that may or may not be supported by the acute phase reactant markers ESR/sed rate and CRP being raised. About 20% of patients have never had raised markers - others no longer mount the response after having been on pred. No-one knows why - it just is so.
Can you persuade his PCP to try a moderate dose of pred to see if it helps at least? Then you can fight the corner if it does. Moderate is 15mg or so - he may need less if they get on with it fairly quickly.
The Dr said ot can't be pmr as no longer showing in bloods so suggested instead it was osteoarthritis in back and pain on kegs and dizzyness caused by nerves being pinched in lower back. Hence the new drug neuronitin.
Could the symptons he now has been caused by pred? Until tbe pmr he was super healthy loved walking etc and was very fit.
Your husband's story practically mimics mine. I also was very fit..walked 4 miles 3 times a week before PMR. Weaned off in October after 5 years or more (approx 2 for PMR and approx 3 for GCA). Felt good except for some muscle aches and weakness in legs going up and down stairs but Predisone can cause muscle weakness. As time went on my legs got worse and arms, and shoulders also started aching along with a stiff neck and the fatigue set in again. I went on 1 mg. which helped the fatigue for awhile but didn't do much for aching. Tried 2 mg. and felt sick so went back to 1. My adrenals were good so went back to Rheumy. She also does not think it's PMR also because my markers are fine even though we all know your blood tests don't always show anything. Went to my GP after that. He thinks I have Fibromyalgia which I understand can be as a result of having had PMR (and likely osteoarthritis is a result as well). The theory is that the Prednisone can hide other issues until you're off it. He referred me to a neurologist to rule out other stuff. Appt. is next week. I refuse to go on high dose Prednisone again until someone can diagnose this. I really feel like my body is telling me no more Prednisone. Hope your husband finds some relief. Please keep me posted.
"The Dr said ot can't be pmr"
After over 7 years of being on PMR/GCA forums I'd stand my ground that PMR obeys no rules and you should never say never.
and anapp
"He thinks I have Fibromyalgia which I understand can be as a result of having had PMR"
There is absolutely NO evidence that PMR can turn into fibromyalgia.
I really do wonder where some of these ideas come from!
I have had Fibromyalgia/ME since 1989, and know the clear difference between the PMR and fibro....I have never in the years past, ever heard that Fibro caises PMR or PMR caused fibro.........what rubbish....so many doctors are jumping on the fibro bandwagon when they can`t work out what`s wrong with their patients....such a cop out!!.....There are so many people now who think they have Fibromyalgia, when they don`t......
Its almost the exact same story for myself. I was diagnosed with Fibromyalgia in oct 2014 and given amytripoline that did nothing. Went back to doctor who then did blood work CRP 59. I was put on 20 mg of Pred and over 22months reduced to zero. Pred never competely got rid of the pain and because its in my hands and feet doc thinks its not PMR. Pain is also in my shoulders hips back chest and thighs and neck. I get tension head aches up the back of my head have constant urinary frequency. My bloods have also never raised again. My rheumatoligist says I have some kind of arthritis whatever that means. In my most recent visit to gp he has now given me cymbalta to try even though over the last 22 months I have taken lyrica and gabapentin and they did nothing for me. So I guess im on the Fybromyalgia train again lol. My Gp gives out drugs like candy and I guess if he finds one that works I will get a diagnosis and my rheumy say be thankful you dont have inflamatory arthritis. There of course is the chance I have both PMR and Fibro. So I guess I will just ride along on the train and hopefully for all of us they figure all of this out one day. Joanne
PMR does also affect hands and feet - the Leeds research people had a look and showed it was the case. And pred doesn't always leave people pain-free. Bladder problems are also common (Leeds asked PMR patients). I have pain everywhere your pain is - and no-one suggests it isn't PMR/GCA. If I stick at 15mg I feel great - don't really need that much to function though.
How do you know the difference between the the two conditions without some kind of marker? I'm going to 3 different types of doctors and not one of them can tell me for certain. The symptoms are ridiculously similar and similar to a couple of other conditions as well. In any event, I believe I misquoted my GP. I think what he was saying was that some autoimmune disorders, of which Polymyalgia is one, are associated with higher incidence of Fibromyalgia, not that it causes it. I agree there's a lot Drs. don't know, but there are so many conditions that mimic PMR I'd think it near impossible to give a correct diagnosis without some kind of marker. In any event, those of us diagnosed with Fibromyalgia have something. I'm not at all sure my diagnosis is correct but it doesn't matter to me what name they give it if they could just find a way to get rid of it or at least lessen the symptoms which are very real and at times very debilitating. Not everyone with Fibromyalgia experiences the same depth of pain...which is probably true of many other conditions, but from what I've read, particularly true of Fibromyalgia. You've had it a long time. How does it manifest itself in you and how do you deal with it?
Beginning to sound like if someone has had PMR and weaned off it and still has pain, Fibromyalgia is the go-to diagnosis. I don't know why the Drs. don't think it's a return of PMR or GCA. That was my first thought. I am not taking anything other than Tylenol now which doesn't do much. It's the fatigue that gets to me more than the muscle pain although that in itself can be pretty limiting some days. My GP usually also gives out needed meds without a problem but he did not suggest anything. My Rheumy said there were meds that could help but I really don't want to take anything that has potential bad side effects unless I have to so trying to stick with Tylenol for now. Can't take anti-inflammatories due to gastritis. If any of us get this figured out we should pass on the info.
I had to really have a think about how to explain the difference between Fibro and PMR....but to go back to the beginning of PMR for me (5 years ago ) and remember pain can sometimes be percieved differently from one person to another....
Having had fibro so long with of course the bonecrushing fatigue....it has what I would call more of a nerve pain....sore skin...headache, blurred vision.....smell/noise/light sensitivity...even if someone gave me a hug, my skin would really hurt.....also my doctor would be able to touch the "points" which were extremely painful....IBS.....I have always struggled to take any medication because of "sensitivity" my worst being noise......
When I was getting more pain in ankles, shoulders, hips....I just knew there was a change....it`s hard to explain that I`m afraid, only that I would have to walk around my house before attempting to go upstairs to bed, because of stiffness as well...
I went to my doctor, which I didn`t really used to, because I couldn`t take any meds she offered me....she knew alsmost straight away with me explaining how I felt, and told me what she thought it was....and when the blood test showed raised markers she was right, because Fibro does NOT show it....I was really pleased to think I could at last maybe take something (had to in fact!) to feel better!...I felt like a car with a new engine (husband `s words) energy, which I hadn`t had for a long time (a false high of course) and pain relief....the side affects of pred have been horrendous for me, and still are....I started at 15mg, and I`m still on 11mg....having had flares....very sensitive to drops in pred......m
MY doctor and physio say I`m complicated because of having both conditions.....and I agree!
Have got a useless rheumie, but she did say at the start, one comes from the spine, and the other from the brain...but in process of changing to another rheumie soon I hope....
Sorry to ramble on, but couldn`t think of any other way to explain, and will probably think of other things later, due to the foggy head which fibro has always given me!
I don`t deal with it too well some days, but better others...I am often house bound....which makes me quite low....then I bounce back other days....just wish I could lower the pred to lessen the side affects, and be able to drive more. I am hoping a new different rheumie will help me with that!
Hope this helps somewhat.....good luck...
Thank you for that desription. Pain is very hard to put into words. I dont know if I have both PMR and Fibro confusing for Fibro because I dont have the fatigue. I am really exausted at the end of the day but its not that feeling of fatigue theres a huge difference. I know because it was one of about 20 side effects I always got while reducing Pred. For me I was forced off the Pred as my markers are normal and I have pain in my feet and hands. Therefore according to Rheumy and GP I dont have PMR and neither would give me a presription for PRED. As Eileen says there are numerous articles out there that quote patients having pain in their hands and feet for PMR. Its been the same since the beggining my hands and feet are painful and at the end of each day or on a bad day my hands go red mostly accross the large knucles and I have slight swelling (edema) I have been off PRED since the beggining of Oct and no better off. There have been no good pain days and I feel its getting worse. I still try to make it swimming every day because it feels so good to get into the cool water. Its the getting dressed and driving there that is the tough part. Odd the last reductions of PRED were done very quickly which was somewhat my bad temper as I am so frustrated with my doctor. I went from 4 to zero in a 2 months. So the pain is worse but the side effects from PRED reduction were less. I thought my markers would go back up but they didnt.
Hope you are feeling better soon Best of luck and thanks again for the desription. Joanne
It is all very complicated for us, and sometimes I think for the medics too, because they seem to (not all thank goodness) go by the markers...mine are now very low, but I still have pain, but then the steroids must be lowering them surely....
My sister is many years younger than me...she`s 50, and has zero negative Rheumatoid arthritis...but in a lot of pain on and off..(we`re a right pair!) She does have painful feet and hands....my fingers swell, and go red, but are not painful....neither are my feet painful, but uncomfortable....which restricts my walking...
I have mentioned my sister has RA, but they say it`s not what I have because it`s come up zero negative!!...by another rheumie......you just can`t win.....I have learned it`s (pardon the expression) a minefield to get through!......
I must admit I do like answers, and like to think I`m doing something about it....Physio/Bowen/Acupunture whatever....
Keep swimming if you can, moving helps......
Lastly I have to say, I have never known over the years, and I know many people, and been to lots of groups....anyone with fibromyalgia that dosen`t have fatigue.....sometimes that is what is rated as the most debilitating of all....as we say, some peple can take a pill for pain, but there is nothing for fatigue....only that awful thing that we have to do too much of....REST!
I don't know...I can't tell much difference in the pain between PMR and Fibro (if that's what I have). I definitely have severe fatigue which makes me totally lethargic some days and I have IBS. Of course I had the "all day on the sofa" fatigue with each reduction from Prednisone as well. But for the most part it doesn't hurt to touch me...not even in the hot spots that are supposed to confirm Fibro. I just ache, legs, arms and from shoulder to shoulder with weakness in arms and legs. Could still be PMR...who knows? My markers were never high and now they are non-existent, thus diagnosis of Fibro. I don't want to go to over 10 mg. again to see if it is PMR which the Pred. would help as I have osteoporosis of the spine and under 10, or is it 5mg? no longer attacks your bones. Plus if I don't have PMR, don't want to go back on Pred at all. But not to fond of what I've heard about lyrica side effects and don't know much about gabepentin. Just hoping for some clarity after I finish all my doctors appts. Funny you mentioned sensitivity to noise...I never thought of it but noise absolutely drives me crazy these days. I try caffeine (which I never drink because it gets me wired) but sometimes it's the only way to get through a day. I feel like the girl in the theme song of Valley of the Dolls. Pills to sleep; caffeine to wake up.
There are 18 (9 pairs) of trigger points in fibromyalgia. If pressure on these trigger points does not elicit pain in 11 of the 18 one of the criteria for a diagnosis of fibromyalgia is not fulfilled. Some of them almost overlap with the trigger points that form in myofascial pain syndrome although I think the structure is different - and when I finally spent 6 months researching what on earth had left me so disabled for the last 5 years it was difficult to tell which it was. 15mg removed 80% of the problems in a week. The remaining pain which wasn't "just" PMR. it was the bursitis and synovitis/tendonitis that is often found in PMR but is not universal, took a few months to go away. But it did go away. Fibro pain wouldn't have - that's what my friends who have both also say.
There is evidence that even 3mg of pred still has an effect on bones - however, I have been at above 10mg for about 5 of the past 7+ years - and have almost no change in my bone density. Osteoporosis occurs in 40% of patients on pred, osteoporosis is found in over 30% of women over 50in the US anyway. It is even higher in other gene pools. Was it pred? Was it going to happen anyway? Unless you had a dexascan BEFORE you took any pred neither you nor anyone else can know.
You don't have to stay on over 10mg pred for long - if you try a week of 15-20mg/day you can stop or go back to your previous baseline dose immediately, you need no weaning after so short a time. Pain that goes away with that isn't fibromyalgia - pred has no effect on fibromyalgia, the mechanism doesn't respond to pred. When you have that answer - you can make an informed decision. It isn't always simple.
Sorry you went through so much Eileen. Glad the bursitis, etc. symptoms resolved for you.
I did have a bone density scan before I went on Prednisone and twice since. It did worsen in areas. I have osteoporosis of the spine and had a spinal fracture just standing up from the sofa and do not want to repeat that ever. I can't take osteoporosis meds for a while yet due to dental work and I know my Rheumy doesn't want me back on Prednisone either.
I agree with your review of Fibromyalgia and that's why I really don't think I have it. Only one spot that Dr. touched was painful.
Think I mentioned when I did the dead slow from 1mg., went to 4 days off and 5th day on. The 5th day pill made me feel worse so that's when I stopped. Because symptoms arose again went back on 1 mg. which only handled the fatigue so went to 2mg. which, again, made me feel worse so back down to 1. Another reason I'm not anxious to go on a "real" dose of Prednisone. But I will check with Rheumy and/or GP again after Neuro visit based on your info.
Gosh...this Prednisone really makes a mess out of all of us doesn't it.