i am pleased more experianced members have posted help ,i do hope things improve ,i do find the other forum slightly daunting but the recent changes here did not improve the format and many drifted away ,but thank goodness they come back to help when needed carolk
Have to increase dose again!
Carol - at least I'm pleased to see that they have reverted to putting our names back under the logo - whatever was that about when they started appearing broken up down the side of it last week? MrsO
I forgot to add that the forum you are asking about is pmrandgca dot forumup dot co dot uk (put the dots in full as posting websites is not allowed until they've been checked, so hopefully this won't be noticed!MrsO
Hi Mrs O,
Of course it was noticed
There is no problem posting this or the full link. It is posted in various threads but here it is again with the NE general site.
http://pmrandgca.forumup.co.uk - forums
http://www.pmr-gca-northeast.org.uk/ - general site
And as a PS we hope to get the private messaging live very soon and the return of the "sticky" threads so certain threads can be kept at the top of lists.
Alan - Just testing! :D
hi - during the recent discussions about increasing and reducing steroid dosage, i believe someone mentioned the name of a certain 'system' or guidelines for reduction - named after a doctor or originator of the guidelines anyway? does anyone recognise what i'm groping for? please post the name if you do.
meanwhile, tamar had to go up from alternating 6 and 7 to 11daily before getting relief. now we are thinking about reduction - have a spectrum of views from people here already, but would like to pin down that name before raising the issue with our rheumy. thanks.
arty48, you are probably thinking of Ragnar's method. That was named after Ragnar the Swede, one of the forum members.
There might even be a separate topic with his exact method if you look around here and at the other site..I believe he has been on all 3 forums. Or at least 2 of them.
arty48, Ragnar's method is at pmr-gca-northeast dot org dot uk backslash stories. (Have to write the link that way because posting a real link results in review of post and delays message).
Sorry, arty, that's a forward slash, not a backslash !!!
arty, scroll upward to previous discussion and you will see the moderator has put the links in, bless Alan.
The method you are looking for is Ragnar's method and is fully explained on the website. Your Rheumy will never have heard of it, but a load of people have followed it and it has worked for them.
But and this is a big but, PMR & GCA have a mind of their own, they come when they want and they go when they want. Pred does not cure, nothing does. It just alleviates the symptoms and the aim is to get down to the lowest possible level that you can live with successfully.
Current medical head honcho's thinking is no more than a 10% reduction at a time. Eileen has written about this on t'other forum. Remember the story about the tortoise and the hare, the hare lost out.
Hope this makes sense.
thanks for that ; Ragnar it is. now i see why you said our rheumy would not have heard of him! an 'anecdotal amateur' rather than a professional source.
our rheumy's system for reduction was pretty gradual and 'tortoise like', so do appreciate that approach. his suggestion, which we followed:
from 15 down by 1 mg per fortnight till down to 11; then by 1 mg per month till down to 9; then by half mg till down to 8; then by about one-third mg till down to 5.
Tamar got as far as alternating 7 and 6 and then had to gradually climb back up to 11 to get relief. so now we have the question of how exactly to reduce from this first instance of having to go back up. i've emailed our rheumy including the following:
"So the next question is about reduction. I understand that standard, 'average' guidelines notwithstanding, this can vary from one person to the next; and Tamar seems to be rather atypical in many regards anyway. I have read a spectrum of advice on how to handle this now - reduce slowly again, as per your method of one-third mg per month; reduce more rapidly until reaching previous low again (but at what rate exactly?); and go straight back to previous low once symptoms under control again.
I appreciate that there is probably no simple answer to the question of reduction from here - nevertheless, what might your suggestion at this stage be?"
the essence of Ragnar's method is in this paragraph, which is really one more individual's 'recipe' for managing this:
"I reduced the Pred by 2.5 mg every 3-4 weeks until I reached 10 mg. Then I reduced by 1 mg every month until I reached 5 mg. I tried to reduce below 5 mg during a whole year, but every time I had to go back to 5 mg due to fatigue. I thought it was no idea to go around being tired all the time when I didn´t have to. Unlike most persons with pmr, I had fairly little pain. When I had slight pain, it could be anywhere in legs or arms. After a year, I thought I would test a new regime. I took the lower dose 1 day, the old dose 2 days and repeated this once more. After about a week I took the step and lowered the dose each day. By doing this, my body reacted positively and I could start going down below 5 mg but only about 0.5 mg at a time. I had 2.5 mg tablets and cut them by hand in four parts, so it really was 0.6 mg at a time. If there was a problem, I just continued 1 day low dose, 2 days old dose for another week or so."
Would be interested in your Rheumy's re-action.
What we all forget is that the pred is not curing it, it is alleviating the symptoms so that you can live life as comfortable as possible, till PMR decides to take a hike - it does have a mind of its own.
arty48, some people never get below 5mg and are on that dose forever. 5mg is thought of as a low dose.
This is so complicated to explain as everybody is different in metabolism, medical history, lifestyles and the hardest thing of all is to accept that you cannot 'win' against PMR, it is a question of living with it.
My brain hurts so if this doesn't fit ignore me!!!!!
There are two aspects to reducing the dose of pred. One is that there is a dose somewhere that is the minimum dose that controls the symptoms of your disease process at the present time and that is the dose you are aiming to find as you reduce. The other is that we all react to a reduction in the pred dosage differently. The minimum dose is simple enough to fit into the picture I think. It's the ideal dose for you now.
The reduction bit seems to be more complex. Some people seem to be able to reduce any old how and get their dose down to something acceptable to their doctor. Some doctors suggest a reduction scheme of 2.5mg or even 5mg at a time down to 7.5mg or even 5mg/day and it works for that patient. They are the patients we never hear about on the forums - they had no problems.
Then there are the cussed ones. We don't fit with anyone's preconceived ideas. Some of us eventually discover that reducing 1mg at a time or even 1/2mg at a time makes it possible to get lower than we ever managed with bigger steps. One thing such small steps does definitely achieve is that when we get to the border between a dose that works for us and one that doesn't, we don't overshoot the mark by very much and if niggles appear we can pop back up to the dose that we were happy at very easily. For some people this needing to go at a snail's pace happens after a dose of about 10mg/day but for others it starts much sooner - 50s girl found she had to crawl from 20mg/day - although that was after a failure with reducing at a far quicker rate and the second time round she got well below 10mg/day before having problems. Certainly, if you try to reduce too fast and cause a flare it is likely that the next attempt will be more problematical. Noone knows why but it is mentioned in the medical research review literature.
The other aspect to bear in mind is that the pred is only controlling the symptoms of an underlying disease process which cannot be measured by any parameters - if they work for you, the ESR and CRP blood values are indicators of the amount of inflammation - the cause of the symptoms, not the disease itself. The autoimmune disease process may wax and wane, it may even go into remission for a time. But there is no way to know other than by reducing the pred - and that may or may not be successful. You may be in remission and not know it because it has happened whilst you are on a moderate pred dose which masks the improvement. And by the time you have reduced your pred dose it may have flared up again. There is no way to tell. That is the problem. Of course if pred was a benign drug it wouldn't be a problem, we'd just happily take it. It's not - and thereby hangs the tale.
If you are going to reduce then trying it very slowly and steadily, resting on each step, seems to offer the best option for success - and Ragnar has offered a pattern to follow. It may or may not suit you - but it is a fair guarantee of getting as low as possible with as few hiccups as possible.
hello eileen -
thanks as ever for your fulsome response. it's a very good overall review of the question. unfortunately, the bottom line remains: everyone is different and we can't tell what will work! so whatever we do is going to be teentative and experimental. tamar hates the steroids but hates the pmr even more and so is inclined to go back to her original pace of reduction, even though she's had to go back to 11 from 6.5. we will reserve final decisions until we hear from our rheumy. we shall see - i know it's a 'how long is a piece of string?' kind of question for anyone, including an experienced rheumy, but he is experienced and also knows tamar some, so we'll see.
hope you are doing ok now.
hi....i am mairryllee and thanks to accept me. Keep in touch for sharing thoughts. hope we'll enjoy. I can cunsult about my problems and definatly get the best solution.
I am the 'anecdotal amateur' that you called me. As Eileen has mentioned, I gave a pattern that was good for me, and as you probably have understood, everybody is different so you have to adjust the method so it fits you. A person with pmr and/or GCA (I had both) can test the values I gave and if it doesn´t work, the tapering period can be made longer or it is possible to decrease the dosage less than I did. After all, I was probably pretty lucky with little pain and the reason I stayed 1 year on 5 mg was fatigue when I tried to reduce - until I tested what has now been called Ragnar´s method.
Something I think doctors should know - and it should be mentioned to all new patients with pmr and/or GCA -is that when tapering is done too fast, it can hit back as Eileen has described and instead of making the tapering period shorter, in most cases it will be a longer period. Too many persons have had to realize this the hard way. OK, there are side effects from Pred, but it is better to accept that and get through as soon as possible but without hurrying as that will most certainly end up in a flare-up. As a male person, it was probably easier for me to accept the side effects and by doing that, I got through fairly well. In an other UK forum that you probably have heard about, I initiated the "Zero Club", where we who have come through the tunnel and have 0 mg Pred can give advice and just by the fact that we show it is possible, I hope many get an inspiration to reduce in a sensible way. Once more I hope that doctors realize that it is not a competition to get down to 0 as fast as possible.
I had the best Rheumatologist I could possibly have had and I also had the benefit of a Professor Bhaskar Dasgupta.
I followed my Rheumatologists reduction plan and I suffered a relapse of the GCA, (I cannot speak about PMR as I did not have it at all).
It is not uncommon to suffer two relapses during the first eighteen months and I did. However once I got down to 10mg, then problems kicked in with the reduction plan.
I then read a posting from Ragnar, and thought, it cannot do any harm, so I gave it a go. It worked and I got down to 5mg quite easily.
Then I went back to my Consultants plan, which from 5mg downwards was to stay at each dose for three months, then take a 1mg drop. I ran into trouble practically straightaway.
I then thought about 'withdrawal symptoms' which no medic ever mentions. I figured my body was perhaps reluctant to let go. So I took the next drop using Ragnar's method and it worked. Mind I waited five days each time as I found it took that long for my withdrawal symptoms to subside.
5 years down the line my GCA is in remission. What we all tend to forget is that pred is not a cure, there is no cure and currently there is no known cause either. Both PMR & GCA have a mind of their own, they come when they want and they go when they want. And that is the hardest part of all to get your head around it.
I know that you previously wrote that Tamar hates steroids, we all do, but without them pain and then the chance of losing your sight if you are unlucky enough to contract GCA.
I do so wish there was something tangible and definitive but at present there is not.
PS There are quite a few people on both sides of the pond who have tried Ragnar's method and found it worked not necessarily into remission but down to as low as 1mg per day.
Do let us know how Tamar gets on at the Rheumatolgists.
More research is in progress now than there was five years ago and one is on a slow release steroid which they hope will enable less dosage.
hello ragnar - i had so come to think of you as a slightly mythic character in the annals of PMR that i was actually surprised to see a post from you in the flesh! trust you took no offence at my choice of words - nothing pejorative intended - just factual - you are an amateur (like most of the rest of us here) and your experience is classified as 'anecdotal' - as opposed to results of a large trial or the like. anyway - your post (and mrs K's following yours too) was another interesting depiction of the situation we are faced with.
i have just learned that our rheumy is away this week so don't expect to have his contribution before next week sometime - i will report, but ultimately we will just have to take some decisions ourselves, finding a course though all the individual parameters at play.
essentially, we (and our rheumy) are well with the 'very gradual reduction' approach.
best wishes to all, and thanks again to you and mrs k.
fwiw i am now able to report what our rheumy had to say about tamar's reduction now, having gone from 6.5 back up to 11 with the flare. "I would suggest remaining on 11mg for the rest of June and then reduce by 1mg a month down to 9mg and thereafter follow the very cautious reduction of a third of a mg every month that Tamar has been doing."
tamar is also on 20mg methotrexate weekly, which in itself is another 'moot point', i know. anyway, our GP mentioned that another patient of hers with PMR had found her reduction going well with leflunomide instead of methotrexate, and suggested i run this by the rheumy too. so have done and again await his comment on that.
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