Reducing Prednisolone

[Patchworkqueen]

I'm down to 9mg after starting at 60mg in January following diagnosis GCA and PMR. Was doing fine until a few weeks ago when I started to get the same pain in my neck and shoulder that I had before diagnosis. Also noticed I'm getting stiff again - legs and hips- after sitting at my pc for any length of time. I was due to reduced to 8mg this Wednesday but having seen my GP he's advised against it and to stick at 9mg or maybe even revert to 10mg. I'm disappointed as hate being on steroids but know it's saving my eyesight so have no choice and was looking forward to going down to 8mg. Going to get a blood test this Wednesday to see if inflammation markers have gone up. GP doesn't seem to think it's a flare but as I've never had one so far don't know what to look for. Can anyone advise?

[DorsetLady PMRGCAuk volunteer]

Hi patchworkqueen,

It may be a flare, perhaps it might be an idea to stick at 9mg for another couple of weeks and see what happens.

I think you are trying to reduce too quickly. As has been said many times on this site, for most people the lower you get the more difficult it becomes! The mantra of not more than a 10% reduction becomes more important once you get into single figures, and you don't have to do it overnight.

Try the slow method, for example one day 9mgs, six days 10mgs , then one day 9mg, five days 10mgs, until you get to one day 9,one day 10, then go on to two days 9, one day 10 until you are fully on 9mgs. This method takes about six weeks, and usually the body doesn't realise anything is changing because it's so gradual. Hope that makes sense - PMRPro explains it much better! If you feel okay, you can then go down again.

As you get lower you might want to do it with half a tablet - I have just started to reduce from 7mg to 6.5mg.

Good luck, DorsetLady

[Patchworkqueen in reply to DorsetLady]

Hi DorsetLady

Thanks for your response, guess I'm looking for a get out clause. I have had a considerable amount of stress in the last couple of weeks and wondered if that might have something to do with the stiffness returning. Will wait on blood test results next week but prepared for higher marker levels. I'm 'lucky' in that Rheumatologist at my local hospital is world expert on PMR/GCA but also realise there are a lot of unknowns in this area, both in the illnesses themselves and also the prescribed medication.

My mother suffered from PMR and was given the same medication which we both were very unhappy about at the time but like all of us left with no choice in the matter. Given that she was diagnosed 25 years ago it staggers me that newer medications - with less severe side effects - haven't been developed in the intervening years. Given the immense wealth of pharmaceutical companies I can only conclude that Pred is a 'nice litter earner' as it's extremely cheap to manufacture.

[polkadotcom]

With PMR and GCA it isn't a race to get off steroids, it's a challenge - to find the lowest possible dose which not only keeps you comfortable but also keeps the inflammation at bay.

If you are having problems at 9mg there isn't much point in forcing a reduction to 8mg as it will only bring more problems. The best way to start off a flare is to force reductions to the point where the only thing left to do is raise them again, and that starts you off on the well-known yo-yo plan where with every reduction which doesn't work you have to go to higher and higher doses as the inflammation gets the upper hand.

The Bristol group have a reduction plan which keeps their patients on 10mg for a year and although I'm certainly not advocating it they do seem to have far fewer flares in the long run. In the grand scheme of things 10mg (or 9mg) is a fairly low dose. Why push it and find you get all the down-sides of Pred with none of the benefits?

[Patchworkqueen]

That's exactly my fear. As soon as I get the results GP will look at reduction but I won't be reducing to 8mg as do feel it's a bit dangerous. I have to say that for most of the time I've felt fantastic this year, going from 60 - 10mg. Everyone keeps saying how well I look - moon face grrr - and I have felt energetic and motivated and not ill at all, in short: a malingerer. I run a business so that also stops me from thinking too much about the illness. But in last couple of weeks have felt so tired and lacking enthusiasm so presume that's all part of the Pred reduction.

Will ask GP if he knows of Bristol reduction plan.

[paulst955]

I have had PMR for 2 years and have had 2 flare ups first time went I had got down to 6mg second time flared at 7 mg doctors are so keen to get your dose down flare ups become common. Biggest problem I believe is the vast majority of doctors have never had PMR and don't understand how bad it can be. I'm on 10mg now and intend to stay on it for a while then try reducing again very slowly.

[PMRpro Ambassador]

January to now is a mere 8 months - the most recent research showed that in GCA there are still indications of inflammation present after 6 months at high dose pred - that means above 20mg. The Bristol group already mentioned takes about 4 or 5 months to get from 60mg to 20mg and then at 10mg stops reductions for a year. If you have PMR alongside the GCA (not all do) to be at 9mg in such a short time would be pretty impressive since PMR hangs on like a leech - to get there from 60mg is terribly fast.

"GP doesn't think it's a flare" - and how exactly does he know? He has no means of knowing that as there is not yet any widely available test that can say yes or no. In the first 18 months it is very common to have flares and the best way to avoid them is to reduce in very small steps and slowly. It's far worse to end up with a flare and be back at 40mg again so you have to start over. Pred side effects go away in time but being blind doesn't.

[Patchworkqueen]

Last appointment with Rheumatologist was extremely positive. He was delighted with progress - markers down to 3 - declaring illness asymptomatic. That was in July.

Hospital have rung twice this morning as want to see me, with a view to coming off Pred completely eventually with the help of a choice of two other alternative drugs taken alongside. I have been given strict instructions not to Google them and resisting - so far - though my daughter has laughed at this as she knows what I'm like researching stuff.

I did think my GP's declaration about it 'not being a flare' a bit cavalier to say the least despite the fact that latest bloods showed an increase again in markers: 18 this time. Having more bloods tomorrow so will know if it's increased again. My feeling is that it has. The hospital nurse has advised I go back up to 10mg Pred for two weeks to ascertain if it's the PMR or stress-related as not really any other way of finding out then go back down to 9mg.

Ten months ago I received very bad news and shortly after found pains starting in my legs, that was the start of what I now know is PMR. That same bad news reared it's ugly head again a few weeks ago, is it just a coincidence?

I'm fully aware of the dangers of losing my eyesight and the irreversibility of it: so understand the enormity of getting it right.

[PMRpro Ambassador in reply to Patchworkqueen]

Personally, if I had got from 60 to 8 in less than a year I WOULDN'T be accepting the suggestion of introducing other medications to try to get off the pred quicker. I don't know who your "world expert" is but I know 3 of those who are all now sceptical about the use of the drugs I suspect he means. They were pushing them a couple of years ago but one of the three at least said in my hearing at a meeting this year that they were changing their mind. Many of us now find that a very slow reduction often does the same job without adding in extra side effects. If your consultant is the same person - I would like to know why he's saying different things.

[Patchworkqueen in reply to PMRpro]

Medications offered are Methotextrate or Leflunomide. Having read the leaflets sent I'm not too sure as both also seem to have worrying side effects such as lung inflammation as well as liver damage plus the side effects associated with Pred, so in a bit of a quandary really. Results from blood test CPR 22 so have gone up again. The hospital nurse spoke to my rheumatologist Prof. Dasgupta (my GP sings his praises) and she came back with his suggestion of getting me off Pred using the above meds but that may be because he knows I'm unhappy being on it because of the long term side effects.

I have an appointment in a month's time so have a bit of time to consider options. I'm still on 9mg Pred though my GP said I should go back up to 10mg. However, the stiffness is receding a little so giving it a few more days to see whether I can manage on 9mg - 5 weeks at that amount. Any info you have would be appreciated.

[Caro12line in reply to Patchworkqueen]

Hi. Just reading this old thread and I am in same position you were a year ago. I have GCA I am down to 10mg Pred after 8 months....my Rheumatologist is Prof Dasgupta and he has suggested MTX or Lef. Did you take either of these? Did they help Thanks.

[30048]

My advice is to go up on the prednisone. I got to 7 and my labs were good ( sed rate 3 ) and I had a flare and had to go back up to 60 and it is not working as well this time. It would have been easier to treat my symptoms instead of letting my optic nerve start to leak again. That has been my experience anyway.