Have to increase dose again!

Arty

When we experience a flare in our symptoms, we are usually recommended to increase the dose back up to where we last felt comfortable. If that proves to be the right dose to control the inflammation, then we should get relief from the increasing pain in a day or two, and then stay there for a month before reducing again. (Once reducing from 5mgs and below, it is recommended to stay at each reduction for 3 months).

If that small increase doesn't work (it never did for me! ), then I would increase back to 10mgs. Once the inflammation is well and truly under control, it is sometimes possible to get back down to the original dose a little more quickly second time around.

What Eileen probably meant by yo-yoing the dose is that sometimes people get into a bit of a roller coaster situation by going up and down 1mg or so repeatedly without truly getting the inflammation under control by going up sufficiently high enough, and remaining there long enough, in the first place.

Hope this helps.

MrsO

Arty 48

It is MrsK here, you supplied us with a case.

The forum you are looking for is pmrandgca dot forumup dot.uk

Hit it hard and fast, maybe go up to 10mg for a week. It is like a forest fire, the pred dampens it down but occasionally you have to up it and get it under control and then start the slow drop down again, it is not much use going up by perhaps on 1mg every other day. Get it under control quickly.

Arty you have my email address.

Eileen is, as carolK has said in hospital but sometimes is able to use her laptop and will probably do her best to answer your question. The analogy of the forest fire is Eileen's words.

Arty

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

thanks for replies received so far - helpful. yes, we have gone to 10mg, hope that will get it under control, and will think about the reduction aspect later!

re-forums, this is actually the forum i was looking for (which obviously i have found) - i have the details of the pmrgca one - but unlike some of the posters here i find the setup of this forum preferable to that one! (and i do have quite a lot of varied forum experience.)

mrs k, afraid i'm not sure who you are or what case you're referring to. i did provide a certain MS (being discreet now ...) with a sort of case study about delayed response to suspected GCA - is that what you meant?

rgds to eileen - do hope her hospitalisation is not too serious ...

Yes it was and I was also trying to be discreet.

I also thought that if you got stuck and Eileen was not around I could perhaps help you out. Eileen found us by accident and is now a good friend.

Sorry to hear you find t'other forum not to your liking. But its horses for courses with forums.

Many of us used this forum and without it, I personally would have been floundering. Some of us would not have found each other and the end result is a National Charity, A Scottish Charity and a Northeast Charity and more Support Groups.

Many of us found the previous style of this forum extremely good, then they updated it and it changed so much it became difficult to use it.The oldies of this forum, still come in and help whenever we can. We owe it.

I will pass on your message to Eileen, I don't like to put what has hospitalised her on an open forum.

Do so hope your better half improves fast.

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

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

Arty

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.

pmrandgca.forumup.co.uk - forums

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

Alan - Just testing! :D

MrsO

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.

freesia

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).

freesia

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.

hi -

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."