prednisone

yes helen think we have message before ,GCA and PMA ,now a second pet scan has shown sero negative arthritis pred 5 years with mycophenolate 12 mts .now on sulfasalazine and 8 pred +naproxen ,my iron has droped a little bowel screning picked up blood and now going for camra .Dont seem to be moving on ,they keep telling me they went me off pred ,been on too long .so just wondered if anyone else had been on 5 years ,not had break from them but lowest i have been .but crp still 88 esr 52 .they said that is quite normal ,now they are treating me for right thing should come down .. bri

"They" may want you off pred - but GCA/PMR have minds of their own and will go away when they are ready. There are plenty of people over on the other forums who have been on pred for over 5 years and I have had PMR for 12 years. It hasn't gone away yet and if that is what you have - then only pred works, whatever they may try to tell you.

Of course, it is perfectly possible that your PMR is actually due to the seronegative arthritis and once they find the right DMARD then it may all resolve. However - I know people who have been on that sort of dose for 15 or more years. If you have a disease that only responds to pred there is no other option whether "they" like it or not. Unless they would rather stop the pred altogether and leave you in pain. There are some who work that way. 

Personally I see no point in being left immobile and in constant pain for the sake of avoiding the possible longterm sequalae of pred. Immobility brings the risk of weight gain, raised BP, cholesterol and diabetes, depression and a load of the other so-called adverse effects of pred. And what is the point of living a few years longer because of not taking pred if those years are going to be painful and cut off from life? "They" want to try it sometime.

thank you eileen ,had a really bad morning the pain got to me ,i have taken naproxen and paracetamol and feeling a lot better ,its good to disgusses problems with people who know ,as you start to think its all in your head ,will feel better when wednesday is over ,thank you for your support.

 i was told PMA started at 18 mg then on trying to reduce ,bad heads up to 60mg as they though GCA ,as test were done for that and did not show ,they said steriods hide conditions tried with  .they have tried other med to bring me off steriods pred . 5 years with mycophenolate 12 mts  my crp esr 88 and 54 ,now another pet scan has shown ,not that but sero negative arthritis .and put on yet another drug ,think if they had left me on steroids i could not have been any worse off .waiting to turn the corner .

have you ever put up by 2mg on 8 was thinking of putting to 10 for 2 days then back to 8 can i do that or do i do slow again thanks

In my simple world you can always go up, but going down takes time, I'm not a doctor though, so I'd speak to yours first

I think that is a smart way to do it.  I've had to back up too many times.  I'm finally down to 1mg. after well over 2 years. Just started alternating 1mg one day, none the next, then 1mg. etc.  Felt great the first day off...better than ever, but now not so much.  Am hoping I can push through this but today was so achy felt like my PMR was back and I'm on Pred for GCA.  PMR was almost 5 years ago.  I am, howevr, glad to know someone else takes 3 weeks to adjust to the new dosage as my Drs. think it only takes a week, but it always takes me close to a month.  Good luck to you and glad your plan is working for you.

Good luck with your weaning I'm doing 4 for the first time today, 5 tomorrow, so I'll probably feel good today and bad for a week after, but hopefully I'll get to zero like you.  Well done so far !

That is a 50% change on dose - it is too fast. Try just 1 day a week - and increase the days of none slowly. 

There are many people who found 1mg a day kept it at bay - and when they stopped it came back. One mg is a tiny dose - i'd take that for life.

Or read the replies part of this thread:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

It's not a 50% change and it's not too fast.  It's merely doing 1 day on, 1 day off instead of going from right from 1mg. to none which is the same reduction I've been doing...reducing 1 mg. a month.  And there's no way I want to stay on even 1 mg. forever if I can help it. The difference I felt that first day off was euphoric compared to the way I usually feel on any dose of Prednisone.  This is what both my rheumatologist and endochrinologist feel is the best thing and I'm ok with it. If it doesn't work, will try something different. Nobody wants to be on prednisone forever and no doctor wants you on it unless it's necessary.  I may have to be if my adrenal glands don't start working again once off totally but I'm trying to be optimistic after almost 5 years of this.  I only gained about 15 lbs. but I want it off!  

When I was in school going from 1mg every day to 1mg every 2 days would have been a 50% drop.

I fully get where you are coming from - all I did was tell you what has happened to others doing something similar and whose PMR  returned. I would say staying on 1mg pred for life is preferable to a flare - and what you said suggests that is a possibility. You were the one who said "Felt great the first day off...better than ever, but now not so much.  Am hoping I can push through this but today was so achy felt like my PMR was back ..."

If your adrenal glands weren't working properly you would know by now - that is a problem from about 6mg and obviously they have kept you well until now so they are producing cortisol or you would feel 

All I can say is good luck - I do hope it works for you but remember you can't force the reduction. If you do - you run the risk of the PMR being back.

I question, but listen, to both my doctors...a Rheumy and an Endochrinologist.  And, according to my endochrinologist, if you're on 60 mg., your adrenal glands aren't going to work and they aren't likely to come back until you're completely off and then they won't know if they will come back until about 3 months after you are off.   I've been on Pred for PMR for 2 years, then on it for almost 3 for GCA.. No day is alike. As for percentages, I simply meant a 1 mg. reduction per month for 15 - 20 months is still a 1 mg. reduction per month when you get to 1 mg. or no mg. no matter how you calculate it. Your comment sounded as if I had suddenly jumped from 10 to 5 instead of continuing to steadily reduce 1 mg. per month.  I went to school too...college even.

If your adrenal glands aren't working once you get below about 7mg daily dose then you are already at risk of an adrenal crisis - you will know well before getting to zero that there is something wrong as you will feel ill, very fatigued at the very least. Even at that stage you would need to be considered for corticosteroid supplementation and there are people on the forum in that situation.

It was top US PMR experts who recommended some years ago that no reduction in pred dose should be more than 10% of the current dose - they were of the opinion that the percentage change was as important as the absolute figure for the dose change. It is also our experience over years that the smaller the percentage change the more easily the body adapts - and it would be such a shame to spoil the ship for a ha'pennoth of tar (another UK expression). So at your level of dose - taking a 1/2mg every day is easier for the body to cope with than swinging from 1mg one day to none the next. The slow reduction approach I mentioned in the link for is a slower way to do a 1mg drop without cutting the tablets but allows the body to adjust more slowly. It is in use in a clinical study in the north of England - this isn't just uninformed ravings on my part.

I've just realised - the expression "when I was in school" is a UK colloqialism, it isn't suggesting you aren't educated and I am, it is merely saying that years ago it was so and it hasn't changed as far as I know. 

Can you help me out with something, please I read that once you get below 10mg you should only go down by 10%, yet once you get to 5-4-3-2-1 you are dropping much more than 10% each time. Is there any research on smaller drops - understand that not everyone has a pill cutter but they are cheap and readily available. Thanks

Research on ideal dosing hasn't been done before but is ongoing using the "Dead slow and nearly stop" approach described in the replies section of this thread:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

This technique allows the drop to effectively be smaller - by spreading it over a longer period. The dose doesn't HAVE to be the same every day though that would of course be ideal and if you ask the pharmacy they may be able to make up capsules with much more graded doses. My husband gets his warfarin done as exact doses rather than fiddle with alternating doses and cutting them - 2mg is perfect, 2.5mg as half a 5mg tablet is not.

Below 5mg obviously 1/2mg is far preferable to 1mg at a time even with DSANS but cutting tiny pred tablets is a pain and not always accurate either. Just doing the new dose 1 day at a time with decreasing days of new dose does seem to make a difference to many patients as their body gets used to it slowly.

Your information on adrenal glands is totally not in conjunction with that of my degreed practicing physicians.  Your adrenal glands do not work at 60mg. and don't necessarily come back until you are off Prednisone.  If I weren't as informed as I am, you would have scared me to death.  There are many ways to wean from prednisone and every person, with their healthcare provider, needs to decide which is best for them.   You can also wean by doing 7 days on current dose, 1 day on new, then 6 days on current, 1 day on new, then 5 days on current....etc., etc.  Whatever works for one doesn't necessarily work for all and in most cases, the drop is going to cause some fatigue and other side effects.  On PMR I was advised to try to work through it til my body adjusted if I could...which I did.  With GCA it's a little more difficult because of the threat of loss of vision.  Otherwise, I would have no problem working through the withdrawal on new doses until my body adjusted in an effort to get off Prednisone sooner which is what most of us, and healthcare providers, strive for.  So far so goo on 1 day on, 1 day off.  Walked over two miles this morning, then breakfast after with friends, shopping, and plans for the evening.  So even though I may have some withdrawal fatigue and aches & pains, I am by no means debilitated.  So far it's working for me.  Doesn't mean it will work for everyone...or even that I'll be able to get totally off.  Just keeping an optimistic view.

I repeat - if your adrenal glands are not working at below about 5mg daily dose of pred you are at risk of becoming ill. 

What makes you think I don't have a degree? I do, in physiology. I also find it interesting the weaning you suggest is the one on this forum - devised by me in conjunction with a couple of other people.

Thanks

Ok, Eileen.  I'm tired and not trying to argue with you.  I agreed with you about one of the weaning methods...simply said there were also other ways...and I got grief about that. All I've been saying is in the final analysis, after all the advice that is given by anyone, people should check with their own doctors and ask them about some things they saw on these forums that they thought might help.  Now, after all this back & forth, I can't remember whether you also are suffering the effects of Prednisone or not, but if you are, wish you and others well and signing off this discussion.