How Long?

Hi BettyE,

Well being a fairly new patient of PMR (since March), not sure my experience will help you too much.

I started on 20mg of Pred and stayed on that for six weeks. Then after blood tests showed no inflammation [i:c576845a03](ESR and CRP normal)[/i:c576845a03], the Rheumy told me to drop to 15mg. I've been on 15 now for six weeks. I was just back to see him for more blood tests and told him that I've been feeling ok except soreness in the big muscles of my hips [i:c576845a03](glutes and hamstrings)[/i:c576845a03]. The Rheumy hasn't called back yet with my results, but I suspect if the blood tests show normal, he'll want me to go to 12.5... or maybe 10. BTW, I noticed in the first week of dropping from 20 to 15 that I had more headaches.... a normal symptom like withdrawal.

Hope this helps.

Hi Betty

I feel you will get some differing experiences here, for instance I have never ever been \"pain-free\" as you call it even prior to reducing but have been guided by the rheumatologist and the blood test results - if the latter remained normal (they had been off the screen prior to treatment) then the advice was to reduce.

Having said I have never been exactly pain-free, I certainly knew when I was having a flare-up as it rendered me almost unable to walk again. Both the rheumatologist and I always based the what action to take on the blood test results knowing that my blood was highly sensitive to any inflammation. Of course, for those people who never have raised blood test markers then they can only go by their pain levels when considering a reduction.

The general concensus seems to be to give it 3-7 days to see if the discomfort lessens. If the pain doesn't improve or worsens after a week or so then it points to increasing inflammation as opposed to steroid withdrawal symptoms. At that stage it is preferable to increase the dose because to leave it too long may mean increasing back up to an even higher dose.

Do hope this helps. and good luck if you are considering reducing shortly.

MrsO

Yes I would also say 3-7days

If after 3 days the pain was really bad I would go straight back up but if I only felt moderate discomfort compared to before I would give it a week and try and take it easy

I am on my 10-7.5 2 month reduction plan at present Seems to be Ok at present I am on 7.5 2days then 1 on 10 at the moment have had to write it all down to make sure Im on the right dose !! Hoping by the time I have my blood tests and Drs visit I will have been on 7.5 for a few weeks and feel OK

I appear to be OK on the non enteric coated 5mg tablets so far Im not sure if they were to cause damage it would be a fast or a slow build up and what problems I would notice ??

Best wishes to all Mrs G

Hi all!

You're obviously not having a nice Bank Holiday if you're posting! If it's any consolation it's cool and raining here too!!

Betty: as MrsO and MrsG have said, I think a week to see if pain will settle is reasonable before going back up. I've said a couple of times that a 0.5mg reduction over 2 days is enough for pain to start up for me. It's very localised too, a return of the ache into the wrist from the base of the thumb on my right hand! If I persist with the lower dose for 2 weeks the ache just gets worse and worse and the finger joints start too. The main problem is it immediately makes doing anything with my hands almost impossible and these were typical before diagnosis and disappear immediately with one 15mg dose and a return to the 13.5mg per 2 days. The stiffness on sitting gets worse again too.

You're much less likely to have a problem if you reduce by the minimum amount - half a mg if that's possible to make up from a combination of tablets (or breaking a 1mg tablet) and reduce only on one day a week to start with, then 2 days and so on.

Rick: I originally was on 15mg for 2 weeks with a dramatic response in less than 12 hours and reduced to 10 with absolutely no problem. Two weeks later I went down to 5mg and the pain in my feet and wrists was back but liveable with. The rheumatologist had only given a short course because he didn't think it was PMR (still doesn't!) but within 36 hours of stopping the 5mg dose after 2 weeks I was as bad as I had been originally. I went back to 5mg until I saw him a few days later and was fairly OK at that though not as good as I am now. However, I made the mistake of starting over from 15mg as he suggested that would get all the inflammation under control and I could reduce again. Remember - I've never had any raised blood values so can't use them as a guide anyway. I'm now struggling to get below 13.5mg per 2 days, even 13 mg is not enough so I need nearly 7mg a day. However, the alternate day doses should allow the HPA axis to recover with time (I think there is already an improvement) and that should mean there would be less steroid reduction symptoms to worry about in the long term.

MrsG: I get a sharp pain as soon as I try using more than 3mg non-coated tablets at a time. I've got a pack of 5mg non-coated tablets and thought I'd try to use them up to save wasting money and have never used more than 1 tablet in the combination of 5s and 2.5s. I don't have any problem with 2x5 coated plus 3x1mg non-coated. I think it must be a very individual thing and there are doctors who think the development of ulceration has more to do with the blood levels of steroid rather than the presence in the gut - hence the advice that non-coated should be used in preference to save money. I've also never been offered any of the acid-reducing drugs, the GP who is convinced it is PMR automatically prescribes coated pills.

Happy Bank Holiday to you all - even Rick, hope Memorial Day was good!

EileenH

Mrs G

I can understand your worries re the non-coated tablets in that you can't SEE what is happening! I think if there were any problems arising you would be aware of gastric irritation such as indigestion, acid reflux etc. Swallow plenty of water with the tablets to flush them down through the esophagus, and (dare I plug it again!) that live yoghurt taken before the tablets will line the stomach and help to prevent any problems!

Happy Bank Holiday everyone - do wish the sun would shine though!

MrsO

Hello Mrs O and Eileen H

Thanks for your information I havent had any indigestion or anything like that so hopefully I will be OK I do take my live Yoghurt every day and always have tablets after breakfast

Eileen H I was thinking the other day where do people get their first pain when they are having a bit of a flare up and mine always starts in the centre of my neck where the collarbones meet Then travels across my shoulders

Have managed to do quite a bit of work on our land this weekend with no ill effects so am very pleased Had a visit from an old friend who I learnt to ride with nearly 30 years ago who now has Huntingtons disease and this was very very sad and made me appreciate what I can still do

Best wishes to all Mrs G

Hi MrsG,

I'm so sorry - I can't think of anything else to say about your friend, the thought is just so sad and awful to contemplate. We had a programme on our local TV a few months ago about a woman in the next village whose husband and son both had Huntington's disease which was repeated after the husband died. She had cared for him at home with relatively little help - and knows exactly what it will be like for her and her son. He's about 19 or so, gets on with it as best he can with his friends but the saddest thing he said was how much he'd like a girlfriend to sit on the step and have a cuddle with but he knows that will never be. To know so graphically what you will end up like must be very difficult to face up to as he does - most people don't really know how bad it will get.

PMR is a doddle in comparison.

EileenH

Yes really awful made worse by the fact that my friends Huntingtons didnt materialise until she was in her mid 50s and she has 2 children and 3 grandchildren who have 50% chance of inheriting it

Yes PMR is definately a doddle in comparison !!

Hi MrsG,

That's a much more normal age to demonstrate it - the guy here was in his mid-40s when it appeared and 50+ by the time he was really bad which isn't too bad either. The boy is obviously one of my 10% who don't exist because they're in the little \"outside the 95th percentile\" corners of normal distribution and is already symptomatic in his late teens. I do hope your friend was still well enough for you to enjoy the visit.

xxx EileenH

Thank you very much everyone for all your replies. Someone should do a doctorate on PMR/GCA; this forum would be a wonderful resource.

It is six days since I reduced from 12.5 to 10. At first all was ok but by last night the pain increased significantly just behind my R knee which, this time round, seems to be my trigger site. Ten years ago it was upper arms which are unaffected this time. I decided to take Mrs.G's and Mrs.O's advice and go back up to 12.5.for last night's dose. This morning all ok again and a busy day which left me tired ( snooze, no! be honest, a 2 hour PM sleep ) then ok to water the greenhouses. Tonight I shall try 10 again and alternate for a while then try for 10 daily. Perhaps by then it might have stopped raining and warmed up a bit. We have just lit our woodburner!

I am amazed and delighted at the result, so far, of taking the Pred. at bed-time as my GP suggested. The rapid pulse, missed beats and rubber legs have disappeared AND, most surprising of all, my sleep is unaffected but I am dreaming more. I can put up with that. I do wake a couple of times but only briefly.

Eileen: I am sure you are right about reducing as gradually as possible and I was not really keen to reduce from 15 down to 9 as I am supposed to be aiming to do before my next appointment in 3 weeks. That would be 5mgs reduction in 2 months, more than 30%. I have the impression that my GP is at least as concerned by my Pred. reactions as by the PMR but with the night dose regime they have eased tremendously as I have just said. Before I see him, though, I have my first ever appointment at with the hospital rheumatologist. Not quite sure what I expect to gain from that, if anything. My first PMR bout was so classic in every way and had such a good outcome ( 5 clear years ) that I don't think there was anything to be gained from another opinion. This time HAS been somewhat different. We shall see.

oh I feel so jealous of all you lovely people on such low doses. I started on 40 mg per day reducing by 5 mg per week. Now on 19 reducing 1 mg per week. It takes at least 3-4 days till I feel 'right' but never totally pain free mostly stiff useless hands and upper back ache a bit like cramp then the odd pain here and there for a few minutes. I feel I get quite ratty too. Often feel like going backwards but I know I have to get down to a reasonable level and its worth tolerating the discomfort for a few days.This cold weather doesn't help so I worked in the greenhouse yesterday but just got hot and bothered. Today should be nice the birds have just woken up so I'll have a cuppa and try to get back to sleep (still not sleeping well)

love you all

Koukla

Correction: Cannot do sums after 6.00PM! 15 reducing to 9 is 40% I think. Feel good sfter last night's 10mg. Fingers crossed.

Sun is going to shine any minute now. For you, too, I hope. Betty

Hi Betty E

As long as your other side effects are diminished by changing your time of doseage and Bp etc is Ok I would stand firm on reducing your steroids to a slower rate

I know all Drs want to get yo down to at least 7.5 but you do have to function on a daily basis I had quite a chat with my Dr about going from 10 to 7.5 Told her what I had read about alternate day therapy ( on Here ) and varios reduction progs othe peoples Rheumatologists had suggested and then worked out my own

My 10 to 7.5 is taking me 2 months 2 weeks on 10 10 7.5 2 weeks on 10 7.5 then 2 weeks on 10 7.5 7.5 and then hopefully 2 weeks on 7.5 before blood tests and the Dr again After being on 4mg in Dec and ending up on 15mg again in Jan I know how down I felt mentally after all this so I am hoping this slow reduction will work and now on 10 7.5 and 7.5 I feel fine and am able to do more than I have for some time but I have given up some things I did before No more Aerobics and unfortunately I have had to give up helping with Riding for the Disabled as that is quite physically challenging and also can be very stressful as well as rewarding of course

I now try just to keep moving doing jobs on my land even just the local large city centre shopping mall provides nice flat walking

Not sure how to approach 7.5 to 5 ( fingers crossed )!! but I know its going to be slow

Best wishes Mrs G

Hi Koukla!

Just wondered why you were started on such a high dose? Did you have symptoms of GCA/temporal arteritis as well? Do I also get the impression that you've not been on steroids for more than about 5 or 6 weeks?

At the meeting in Newcastle for the launch of the DVD, one of the things said by the doctors there (who have research/special interests in PMR) was that they feel that there is an over-prescription of steroids - not so much that they are used for too many but that there is a tendency to start at much higher doses than is necessary and they seemed to have a feeling this then makes it difficult to get down to a low dose. The recommendation is to start at 15mg (20mg if absolutely necessary) and remain on that until the symptoms have gone and stabilised (some people will still have some niggles I suspect) before starting to reduce gradually. They also emphasise the gradual reduction and I wonder if some GPs are so desperate to get you down to 7-ish that they rush it.

I pointed out the other day that as you go down the percentage of the reduction increases if all you are using is 5s and 2.5s although I noted you are obviously using 1mg tablets. Once you get to 15mg it might be an idea to stay on it for a couple of weeks before going down again - the expectation is for PMR to \"burn out\" in a couple of years although there are a lot of people on this site that believe that is a myth! - and there are plenty of people on here who have taken that amount of time to reduce their dose to the low doses of which you are so envious.

Certainly my own experience has been it seems more difficult to get down the dose than it was during the first 6 weeks when I went down 15/10/5 with 2 weeks of each before stopping for a few days when I was totally back to square one and in agony. Now a reduction of half a mg over two days starts the pain in my wrists again and I'm suffering from having another go last week. Wished I was a man this morning as I struggled to get my bra on!! :lol: The weather hasn't been ideal though - very windy which I always did find a problem, even if the temperatures here are in the mid-teens rather than what the British east coast gets! That said, I'm fairly happy with the 6.75mg/day which is the equivalent of my alternate day dose of 13.5mg and I have the feeling that the few side-effects I had have either gone completely or are improving and that there is now very little suppression of the HPA axis.

Anyway - good luck with your reduction, you'll get there,

EileenH

Koukla, Hallo.[quote:fb3c53f828]

I feel I get quite ratty too. [/quote:fb3c53f828]

If you only get \"quite ratty\" you are doing well.

After I had been on Pred. for 22months with my second PMR bout, I became so alarmed at the changes in my personality which I felt unable to control, that I asked My GP to wean me off. I think I convinced him that this really was urgent and for three months I gave steroids a miss. Bliss for a couple of weeks, then the pain increased to such an extent that I went back to 15. The pain relief was marvellous but there were again side effects but different. This time they were all physical. High BP, fast pulse etc.and incredible weakness. I was a totally useless article for half of every day. GP assured me this was all down to the Pred.. and suggested taking it at night. This has made an incredible difference. Don't ask me why. I don't think anyone can predict how we will be affected by our illness and its treatment. We just have to keep on trying and not assume that what has happened before will happen again, whether its the site of the pain, our reaction to reducing the Pred. how we feel day to day, our reaction to events...whatever. That's why this site is so good. We can have a moan or share a triumph, however short-lived, ask questions and give encouragement which I hope is what I am doing now.

Best of luck. Don't be too hard on yourself. Betty