Thanks for listening and any responses.
Hi, I did have extreme fatigue for a long time. I only stayed on pred for 7 months because for me it made me crazy. I was so sweaty and moon faced. Couldn't stand it. I did an anti iflamatory diet that made the world of difference. I have been off pred 4 years now. My pain is not as bad, but I do get extreme fatigue still. All I can do is stop and take a nap. Then I might have 3 or 4 weeks that are really good. Just depends. I watch what I eat to see if it affects me. I do not eat tomatoes, potatoes or peppers. They really mess me up. I used to come here often when my PMR first started, but like to check back to see how everyone is doing. Stress can also cause the PMR to get worse and the fatigue. So you really have to watch that. Hope this helps. I am really doing good, but still have to watch my rest and stress.
Thank you mrs UK. I will go to that site and read up. Hi Nanatjjj - fatigue is a big part of any autoimmune disease to answer that part of your question.
It's unusual to need that high a dose of pred - but what dose did you start on from your PCP? Was it lower and put up until you responded or what? As you will have seen from the site MrsUK the usual upper dose is 20mg in PMR but the crux is usually the speed with which the symptoms improve: they look for an improvement of about 50-70% within 24-48 hours and that is regarded as confirming the PMR. RA will also respond to steroids but much more slowly.
The state you were in after Christmas is absolutely typical textbook PMR - the getting out of bed and not getting up off the toilet! I do not have raised blood markers, never have. Although PMR and late-onset RA may appear very similar and PMR may later "turn into" RA, apparently it is unusual to get the bilateral muscular symptoms with RA. However - the diagnosis is often not clear. There is an excellent site called rawarrior by a young woman in the US which has a lot of info which you might also like to look at - Kelly's own info is spot on, no rubbish and gives a lot of info about diagnosis of RA which is also fraught with problems.
Hope this helps,
MrsE
Hi MrsE,
Thanks so much for posting. My PCP started me out on Prednisone 60 mg a day for 5 days. I think she was looking for a response and thought I would be fine after 5 days. I felt better after day 1 and by day 2 I felt really good (better than many prior months even). However, on day 6, with no Prednisone, I crashed. So she put me on 40 mg/day until I could see the rheumy. I got on a cancellation list and was able to see him in 2-3 weeks. During that time I tried tapering. Got to 30 mg without too much trouble, but crashed again at 20 mg. So the Rheumy has me on a slower tapering. I am now on 25 mg/day. Lot's of fatigue, various aches/pains, old OA problems, FM, etc. But I do not have the weakness or inability to get up thankfully. When I did have the acute problem, both of my knees were swollen, I had to have help standing, could not walk for a few seconds, and then shuffled to the bathroom. Both of my arms hurt like the devil too, upper arm muscles just did not want to work and felt like I had overused them exercising. I think my clinical picture pointed to PMR except for the high doses of Prednisone I have required. Also my lab work does not correspond. My sed rate is normal. My crp was 58 and is now down to 18.
Thanks for the information on the other site, rawarrier. I will look at that too. I already looked at the site mrsUK gave me. It has lots of good information.
The 5 days at 60mg was possibly the problem - overkill. The pred doesn't cure anything at all - it reduces the inflammation and that deals with the symptoms. As long as you are on a high enough dose you will be fairly pain-free but you need a dose that will control the inflammation to deal with the pain aspect. That fast response you had suggests PMR - and RA is meant to need several joints to be affected. The lab work is actually fine - ESR is not always raised and CRP is said to be much more sensitive and that was definitely raised! There seems to be a trend amongst US docs to try and get you off the steroids as if they have cured the PMR - it's not like other sorts of inflammation, it doesn't go away until the autoimmune disease process burns out and that can take its time.
PMR and GCA are believed by lots of experts to be at opposite ends of a spectrum - and I am of the opinion that means there must be cases at all points in between but there is never any mention of that! Did you have any other symptoms besides what you have mentioned? Stiff neck, headaches, cough, sore throat?? Was it just your biceps that hurt (the upper arms)? What about your thighs? I'm quite interested in all this which is why I'm asking!
hope you get sorted out soon,
Eileen
Hi MrsE.
What I remember is that my legs/knee, etc just did not want to work. I'm not sure if it was mainly the knees or the hips too. But I just could not stand. I thought the arms were sore from pushing off to get up, but actually the sore arms happened concurrently, not after the fact. I think it was just biceps. I dont remember my thighs hurting per se, but I did not seem to have any strength in them.
The other problem I have is an increase in my stress incontinence, which no one seems to think is related to anything. I wonder if it is just more muscle weakness. I already had the problem, but now it is much worse. They checked me for infection and yeast, both negative thankfully. So I am trying to do Kegels, which I have not done in 30 years. Hope that helps.
I was sick with viral bronchitis/asthma in December. Had just finally gotten over that. The cough was almost gone. Then a few days after Christmas I started to go downhill with this problem.
Was the return of the stress incontinence related to you going on steroids? Or did it happen when the PMR (or whatever it is) appeared? I think a lot of people have very varying bladder effects both with PMR and with steroids (I think I've seen it mentioned in possible side-effects). That applies to several things that are said to be side-effects of steroids - they can be part of the PMR picture too! Great disease!
I felt weak in that as soon as I tried to do anything that required even minimal effort I was exhausted and bathed in sweat. Even washing the pots after breakfast nearly finished me and I had to sit down for half an hour to recover!
It's also very common for PMR to be triggered by another infection (or any stress of any sort, injury, emotional etc) and appear soon afterwards.
MrsE
Thanks for the info MrsE. Since I went on the Prednisone pretty quickly (from the PCP) I dont know if the incontinence worsened with the onset of the poss PMR or the steroid use. AT least I know now that others have had various bladder effects from both PMR and steroids. Maybe I have a chance that it will improve! I am not a surgical candidate (age/obesity + whatever is going on now) so I have to try and attack the problem another way.
Boy I know what you mean about the weakness. I cant seem to do much of anything without sitting down for a rest period. I must be pacing myself better because my heart does not seem to be racing as much (with any kind of exertion).
Nan, I can't help with the incontinence but may have some insite about the fatigue. When I was trying to taper too fast the fatigue really put me down literally. I became so weak that all I could do was lie on the couch. I would start yawning and I had no choice but to go to sleep. Once we got the steroids back on track and slowed my taper things have improved. I don't think our bodies like big jumps with the steroids.
Nanatjjj, I thought the incontinence thing was just menopause hitting me -- I had asked my rheumy if prednisone could cause incontinence and she said "no" ....I knew it had something to do with the pred, because even though I'm in menopause it had not been a problem at all for me until I started the prednisone.
freesia2011-02-28 15:18:29Hi russellcat. i have wondered about the tapering. But I started out on much larger doses than most of you. I am still on 25 mg/day for a couple of days then I move to 20 mg/day. I am a little worried about that since last time I tried 20 mg (down from 30 mg) I crashed. Maybe this time it will be better since I will have been on 25 mg for 2 weeks. If I have any trouble (well, more trouble that is) I will call the rheumy to see if I can try 22 1/2 instead of 20.
freesia, many people on this forum seem very knowledgeable. I am not sure if my increased incontinence is the pred or the PMR. But I am not much of a believer in coincidence and my increased problem started with this PMR flare up or the start of the pred (they occurred close to each other). I have a hard time believing it got so much worse for no reason. I am past menopause, so I knew that was not my problem. Just hoping it gets better over time and with Kegels (yuke!).
Hi Nanatjjj,
I'm sorry about the trouble you are having with exertion. It does sound like you started out on a higher dose of pred than most of us here, but maybe your doctor had a good reason for that.
Trying to taper too fast can really mess you up! I found that out--and started getting pain so bad it was almost like when I was first diagnosed. About a month ago, I had gotten all the way down to 5.5 mg/day and BOOM! Terrible stiffness and pain again, 24 hours a day. My rheumy had me go on 15 mg for 3 days, then taper to 10, then 7.5. I can't believe it---I went from feeling like I would die to feeling great. Still on 7.5 and I'm doing okay. But anyway, didn't want to talk about me, but I can't even believe I am feeling this good after soooooo much pain. I'm just waiting for the other shoe to drop--but trying to enjoy this reprieve from suffering..I never thought I'd get out of pain at all, so have faith, it will happen.
About the incontinence--I'm 63, almost 64, so I actually have been through menopause, I guess? Is it called "post-menopausal" ? Not sure how they figure this. Anyhow, I think I was developing PMR in stages for a whole year almost, before I got diagnosed--it was so vague it never could have been diagnosed in the early stages. Anyhow--during that year I never had a problem with incontinence--it started after several months on prednisone. So I am pretty sure the prednisone is the cause. I think the Kegels will help!
freesia
Hi freesia, I am 63, almost 64 too!!!! Went through menopause in my late 40's. Wow, maybe if the increased incontinence is related to the Prednisone, it will get better sooner than I expected. I really dont think it is fair that I should have to be doing Kegel's this late in my life!!!!! I dont think my PMR has been coming on gradually, it seemed to hit me like a boom! Though you never know looking back over the year. They think I might have RA or PMR. I am the age for PMR and I fit the clinical picture, just have required larger doses of prednisone and my labs dont agree. Just a suggestion here - I have just had a urine culture done because I had this suspicion I had a urinary tract infection and it is very positive for bacteria!! This started last summer when I felt the stress incontinence was different in some way but the GP here in Italy wasn't convinced and didn't suggest a culture. I struggled on (on a slightly higher dose of steroid) until November when I was back in the UK and asked my GP there. She just handed me trimethoprin and sent a sample away - bingo, positive and right antibiotic and I felt better. This month I had the feeling it was back - never what you would say a rip-roaring attack, not doubled up in pain or anything but something not right.
PMR can creep up on you or just appear overnight out of the blue. And the bloods are pretty immaterial - about a fifth of patients with PMR have no abnormal blood tests. And about the same need higher doses. The only common factor with PMR seems to be that when you do get given steroids the symptoms improve dramatically (like more than 50%) within a very short time (24-48 hours). I took my first dose at 10 am and walked downstairs like an adult not a toddler, one step at a time, at 4 pm!
cheers all,
MrsE
Hi MrsE, My PCP checked for urinary infection a couple of times now and fortunately it has been negative. Also checked for yeast and it was not a problem. So I am left thinking it is muscular in nature and have to do those darn Kegels!
Thanks for all the info, i.e percentages of those with no abnormal blood work. So about 1/5 also need higher doses too? I thought maybe that was rare that I have required higher doses. I do fit right in with the dramatic improvement in 24-48 hours. I even stopped using my cane for my bad right knee (that has no cartilage). Of course, I was on 60 mg at the time. I wonder if I would have had the more than 50% improvement in 24-48 hours if I had been given 10-15 mg.?
The recommended starting dose is 15mg, upping it to 20mg if the typical response is not found. Some people get a lot of relief straight away with the 15mg but it then takes a few weeks to build up further as bursitis takes rather longer to resolve than say muscle pain. It used to be common to start patients with suspected PMR on higher doses, 30 or 40 mg a day, but some researchers looked at it and felt that this was unnecessarily high and as good results came at the 15/20mg level so that was where the dose level came from. The dose of 60mg is usually kept for patients with temporal arteritis (giant cell arteritis) because of the risk of losing your sight - in some places they even give even higher doses via an infusion for that. Then they reduce it very quickly down to about 30 or 40 and then reduce at a slower rate.
High doses of steroids for a very short time are not a problem - you can reduce it quickly and the adrenal glands will just take over again. The problem is when you have a middlish dose over several weeks or more and then the adrenal glands need much more time to adjust back to normal. A lot of the problem is possibly that PCPs have to know a bit about a lot of things and don't keep up to date with current thinking. PMR isn't a rare disease but it isn't common either and many PCPs maybe haven't treated a case for a few years and are out of the loop. That said - so are some rheumys it seems! There have even been changes in the recommendations from the British Rheumatology Association in the 18 months I've been involved in the forums - for the better. And probably because of the group of women who started the UK charity for PMR and GCA who have brought things to their attention. You do hear them say - I haven't come across that. But think about how much time we get with our doctor to say anything or to ask about things. The biggest group of people who know what PMR is about, what it is like to have it, has been muzzled in practical terms!
hope you get some good answers soon.
MrSE
MrsE, thanks for the infor. Between these forums and the information I am reading, I am getting more knowledgeable too. I feel fortunate to like my rheumy and his PA, who sees me each time. On my first visit, she is the one who first said it looked very much like PMR. But he (the rheumy) questioned the high dose of Prednisone needed, so they did not confirm that dx.
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