I took prednisone for 6 months starting with 25 mg reduced it to 0. After a few weeks it felt likeit was coming back so I tarted taking it again. Now it seems like it doesnt work unless I take a high doseage of 25 mgs again. Should I take more than 25 and for how long?
Wow, Gary, let's calm down. More info please. When were you diagnosed. Surely from what I've read you're not telling us that you were diagnosed with PMR , a clinician put you on 25 mgs of preds and then you tapered down To zero with your clinicians knowledge and approval within 6 months? Please let me know abit more info. Christina
Not surprised you are having a relapse Gary.That is much too fast a reduction.I dont knpropose a much slower reduction plan.I doubt you will need to go as high as 25mg.What happens is you find a dose you are comfortable woth to get rid of symptoms and then very slowly reduce.w if your doctor was well versed in PMR but it seems not.Find a dose you are comfortable with to get rid of the symptoms and VERY gradually reduce from that dose.
There are people here who will advise you and
My response got in a bit of a tangle.Sorry.
I was diagnosed with Polymialgia in May and started with 25 mgfor a onth then 20 and so forth to 1mg a day that was over 6 months. My esr levels startd at 24 then down to 14 after 1 month, then to 38 and back to 24. The doctor thought maybe something else is going on so he referrd me to a specialist and my appointment is April 22. I have has lower back surgery since on Oct 1 and that seems to be going very good, but my Polymialgia sems to be coming back. o I strted taking 25 mg again nd it sees to work sometimes but not alwaysso I have been reducig to 15 a day and that is not working very well. I am trying to ge off of it but keep going bac to it. Should I go to 25 again and stick with it for awhile? Thank gary
Hello Gary. When you were diagnosed with PMR was there a reason as to why yo were prescribed 25 mgs. Most diagnosed with PMR are prescribed 15 mgs for at least 6 weeks followed by 12.5 for 6 weeks. Thereafter, the PMR Bristol plan recommends 10 mgs for 1 year followed by a tapering of 1 mgs per month thereafter. My rheumatologist however following the initial 15 and 12.5 prescribed 10 mgs for 6 months.
although ESR and CRP levels do not always tell the true story, sometimes not indicating any inflamation at all, your results appear to be all over the place, not that I'm a clinician, and that could be because your medication is not being handled correctly.
you say that you have had surgery yet you were not prescribed a higher level of prednisone to compensate for that. I believe, please look up on line, that following surgery extra stress is placed on your body so that is why prednisone is recommended, yet your surgeon or GP failed to increase the dose, hence what appears to be a flare up. When the flare up began you say that you started at 25 mgs but you still were experiencing bad days. If that was the case why did you reduce the dosage further? And now At15 mgs things have gone from bad to worse. You say that you want to get off these drugs, well, don't we all!! But I can't see you getting off them if you do not follow a correct tapering schedule, and what you're doing is not that. Wait for one of the medically trained contributiors to answer as to wether you should up the dose. However, if I was you I would most certainly be tempted. But one thing is very important if you do stay on it for awhile and then taper down with control and not quite so haphazardly. Good luck christina
Thanks I was prescribed 15 to start and tat didnt do anything so he ut me to 20 and still nothing as soon as I took 25 bingo, felt great.. By the tme I had surgry I was down to 3 mg a day and no the doc did not say to take more. I went from 3 to 2 then 1, While I was reducing at about maybe 10 a day I started to feel like it might be coming back but was not sue. Then the back thing stated and so forth. I am confused as to what to do at this point but between shakey hands, swollen face and feeling jumpy , I want to get of this stuff. Do you sugest I go back to 25 and stickwith it?
Gary - PMR is not an illness that you can take pred for and it goes away. PMR is only the symptoms of an underlying autoimmune disorder that causes your body to attack itself, causing inflammation and, as a result, pain and stiffness. As long as that underlying illness is active you will need pred to control the symptoms. Basically, either you take enough pred to do that for however long it takes or you don't bother, If the autoimmune bit is still active - the PMR will "come back".
Unfortunately, once you start to yoyo the dose it becomes increasingly difficult to control the inflammation because in some way the body becomes tolerant of the pred and you need more and more to get the inflammation under control. Either you have to educate your doctor or find another one. To have to wait until April for a rheumy appointment is a piece of nonsense.
Many experts advise that if a patient with PMR requires surgery then they may need a higher dose of pred until recovered - because surgery outs you under stress and stress almost always makes PMR worse.
This link:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
will take you to another thread on this site. In the first post there are several more links to a site where you will find a lot of info, all medically approved, as well as another forum. The final link in the post is to a paper written by experts in PMR/GCA to help GPs diagnose and manage patients with PMR. I suggest you take this to your doctor and ask him very nicely to read it - because he needs to learn that PMR isn't a) complicated to diagnose if you go about it properly not is it b) an acute illness that a couple of months of pred will "cure". So his idea there is something else going on is probably unfounded - he just went about it incorrectly.
The paper tells you (or rather your GP) quite clearly how to go about it - but if you want to be reasonably pain-free you need to accept you will need pred for probably a couple of years. As a bloke you may be lucky - men often get through pMR much more easily and quickly than average. Yes, we'd all like to be off pred tomorrow - but PMR doesn't work like that.
Thanks We spoke here about 8 months ago when I first started taking pred. you were quite helpful. It seemed to go well for 6 months but as I stated the back injury seemed to not help and it kind of came back. Not as bad as it was but still uncomfortable. Like you said for the last 2 months I have been yo yoing. I am away from my home in Canada for 6 months and do not have a doctor here in the USA I will be going home in April, that is why the specialist appointment in April.I think I will go to a doctor here and get my prescription filled for prednisone and start taking 25 mg again for 1 month and then down to 23 for another. Then maybe 20 for awhile until I get home. Does that sound like a good idea?
Yes, Gary ---- it is wishful thinking that PMR goes away, and reducing fast makes it worse to deal with.
I am trying to reduce from 20 to 15 and had a difficult time. I mg at a time for a month hopefully will do it.
Luckily this website is VERY helpful with kind advise.
It certainly sounds better than trying to stop very quickly. Are you tall and well built - if so then you will likely need a bit more pred than a small person. Also, I know the advent of winter in Canada is making a few people struggle with the cold - are you far enough north in the USA for that to apply as well?
The fact it went well for 6 months was probably because you were still taking some pred. The trick is to find the lowest dose that works and when you reduce slowly and carefully but steadily that dose may be as little as 4 or 5mg. Some people do get off pred in a year or so -but they are then more likely to relapse at a later point than people who go about things mroe slowly. The idea is to keep the total dose of pred as low as possible - but if you rush you often actually end up doing the opposite because you have to go back to a much higher dose to control the inflammation.
Eileen I am going to go to 30 mg a day as 25 seems to not quite be working as good as it did when I took it 6 months ago. I dont have real pain, only discomfort in my joints. Can you advise me as to how long I should stay at 30 and when to cut down to what? Thanks Gary
Remember you need to balance the downsides of the pred with the benefit you get - 30 is a high dose so a lot of downsides to take into account.
Many people never become totally pain-free even on pred and PMR does change. Plus higher doses of pred can affect your tendons and ligaments, especially if you are also trying to do too much. If it were me I'd give the 25mg a bit longer though first - a flare does often take a bit longer to settle down.
The important thing we were trying to get through was the importance of reducing in smallish steps, not more than 10% of the current dose at a time so 2.5mg to start with down to 20mg. Then you reduce slowly looking for the dose that still controls the symptoms well - neither I nor anyone else can tell you what that will be, everyone is different. But even a dose of 3 or 4mg may be enough to prevent a flare for some people - which is why you need to be SLOW and use small steps after about 10mg. It is no good reducing every couple of weeks at that stage - you will miss the point that is controlling the inflammation and end up as you are now again.
Thanks again Eileen I found that 25 mg a day seems to be a good dosage for me now. I have been up and down for about 6 weeks at 20 to 30 trying to find it. Now that I am here, can you tell me how long more I should stay at 25 and when should I go to 23 or 22 and for how long at that level? Thanks Gary
It is a good idea not to reduce until all your symptoms that responded to the pred have stabilised. Once that has happened you could start to reduce very slowly - 1mg at a time every couple of weeks at that sort of dose should be fine.
In the 5th and 6th posts of this thread on this forum:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
you will find the very slow reduction I, and a lot of other people, have found successful. It explains the thinking behind it and how to use it. If you can't get 1mg tablets then you can get a pill cutter at most dispensing chemists so you can cut 5mg tablets in half. The reduction plan will also work for 2.5mg reductions - you just make sure you start at 1 day new dose and at least 6 or 7 days old dose. Be aware of any returning discomfort and mark time for a few days, i.e. don't reduce any more until you feel better.
Good luck.
I have the same problem going down from 25 mg to 22 1/2 mg. It is still a struggle with painful sciatica and piriformis syndrome. I will follow Eileen's advise with the 1 mg reduction rather the 2 1/2 every couple of weeks.
Hi Eileen Me again I cant seem to find a dose that takes away the symptoms of the . I started at 30 again and it works for awhike like 3 days then comes back. I keep going down and up trying to get it. Should I keep going up until I see some results? When I first started 9 months ago 15 didnt work then 20,no good and then 25 worked great. Then after 6 months of reducing and still feeling ok I had back surgery and one month later I started taking it again but cant find the right dose. ???????
Cant find the right doseage?? Should I go higher until it works?
I think there are two possibilites here, one has two aspects. One is simple: it isn't actually PMR, or at least the version we discuss here, pred-responsive PMR. There are a lot of things (arthritises mainly I mean here) that would respond some to pred but if they are progressing then they will reach a point where the pred doesn't cover it.
There are a few things that are often found alongside PMR which aren't fully relieved by oral pred, or only at a high dose. There is myofascial pain syndrome for one. Or piriformis syndrome - or bursitis in the various joints. Local cortisone injections work better than oral pred, physio/mobilisation of trigger points, osteopathy and Bowen therapy are all options I have used and helped me.
The other is that you are developing a resistance to the form of corticosteroid you are on. I was originally put on prednisolone and was fine, reduced to about 9mg before any problems. Then I got two new batches of pills, enteric coated 5mg and 2.5mg. For the first time they were loose, in a bottle, instead of in blister packs so obviously a different manufacturer. I finished what I had and then started on the 5mg ones. Within days I developed a flare. I tried with the 2.5mg ones and was fine, back to the 5mg ones and back came the pain. By then I was living here in Italy and the rheumatologist switched me to Medrol (methylprednisolone) and to start with I was fine at 10mg. Then the effect got less and less - or the PMR was flaring BIGTIME. Anyway, I got to 20mg to get any effect and I had to take it at night to get any effect before lunchtime. I got awful side effects, massive weight gain, a beard, hair and skin went mad. Eventually my GP put me onto another form of steroid, a new form of prednisone which is the only other option here.The first day she told me to take 15mg - I had the same magic response as originally. I have reduced steadily to 4mg with no problems. It might have been coincidence - I don't think so.
I don't think you should keep increasing your pred dose, this needs more than just the same action over and over again with the same result - that way lies madness. The fact this last lot came up after back surgery suggests it could be muscular mechanics, maybe in addition to the PMR. In which case my first approach would be Bowen or a physio.
I think there are two possibilites here, one has two aspects. One is simple: it isn't actually PMR, or at least the version we discuss here, pred-responsive PMR. There are a lot of things (arthritises mainly I mean here) that would respond some to pred but if they are progressing then they will reach a point where the pred doesn't cover it.
There are a few things that are often found alongside PMR which aren't fully relieved by oral pred, or only at a high dose. There is myofascial pain syndrome for one. Or piriformis syndrome - or bursitis in the various joints. Local cortisone injections work better than oral pred, physio/mobilisation of trigger points, osteopathy and Bowen therapy are all options I have used and helped me.
The other is that you are developing a resistance to the form of corticosteroid you are on. I was originally put on prednisolone and was fine, reduced to about 9mg before any problems. Then I got two new batches of pills, enteric coated 5mg and 2.5mg. For the first time they were loose, in a bottle, instead of in blister packs so obviously a different manufacturer. I finished what I had and then started on the 5mg ones. Within days I developed a flare. I tried with the 2.5mg ones and was fine, back to the 5mg ones and back came the pain. By then I was living here in Italy and the rheumatologist switched me to Medrol (methylprednisolone) and to start with I was fine at 10mg. Then the effect got less and less - or the PMR was flaring BIGTIME. Anyway, I got to 20mg to get any effect and I had to take it at night to get any effect before lunchtime. I got awful side effects, massive weight gain, a beard, hair and skin went mad. Eventually my GP put me onto another form of steroid, a new form of prednisone which is the only other option here.The first day she told me to take 15mg - I had the same magic response as originally. I have reduced steadily to 4mg with no problems. It might have been coincidence - I don't think so.
I don't think you should keep increasing your pred dose, this needs more than just the same action over and over again with the same result - that way lies madness. The fact this last lot came up after back surgery suggests it could be muscular mechanics, maybe in addition to the PMR. In which case my first approach would be Bowen or a physio.