Dont be filled with horror

Hi Linda and welcome to the forum with your very upbeat posting. It's good to hear that you are managing so well.

With regard to your difficulties in decreasing the Prednisolone below 5mgs, this seems to be a problem for all of us. I don't know whether you have come across a posting from Ragnar in Sweden but his advice was to decrease much more slowly from this dosage and certainly much more slowly than advised by most of the medics as the percentage decrease is so much greater the lower the dose. I have had PMR and GCA for almost 4 years and been up and down from a starting dose of 40mgs. I tried his approach the last time I tried to decrease from 5mgs, having been on that dose for 3 months. It took me about 5 weeks to get from 5 to 4. I remained on 4 for about 10 weeks. This drawn out procedure worked for me and I've just done the same tapering regime getting down from 4 to 3, however this time it took even longer.....about 7 weeks (listening to my body and tapering accordingly). It seems to be taking longer for me to reduce than for Ragnar but then that could perhaps be to do with the different hormone reaction in a woman.

You say you have had PMR for 18 months - I have read that flare ups are common in the first year to 18 months, so hopefully you are now past that. There are a few lucky people who have a text book recovery after about 12 months.

I also feel that steroid withdrawal symptoms rather than PMR symptoms play a huge part in the difficulties of trying to reduce below 5mgs.

Yes, it is annoying when people say how well we look - they can't feel our pain so we can't expect them to understand. At least, we on this site do understand exactly how each one of us is feeling and oh what comfort we all draw from that!

Good luck on your next try at very slowly tapering from 5mgs.

MrsO

Thanks very much for your reply Iwill certainly try the slower reduction it may well work because as you say not sure if the symptoms I am getting are from the prednisolone or Polymyalga. I have been back on 5mg for 6 weeks will give it a bit longer and try again, although my GP will not give me 1 mg tablets as they are not enteric coated, I end up cutting my 2.5 into bits.

Onece again thanks for the advice.

Linda

Hi again Linda - yes, I too, have just bought a pill cutter in order to cut a 1mg uncoated tablet in half and take together with a 2 and a half coated tablet to total my 3mgs a day. I haven't bothered to do this previously but have relied on a daily carton of organic fat-free live yoghurt on my muesli immediately before taking the pills in order to line the stomach, having been unable to take the usual stomach lining tablets as they adversely affected my bowel! The added bonus of the yoghurt is hopefully that the calcium is helping to protect my bones too alongside 3/4 helpings of oily fish a week.

I expect you'll be on the 5mgs for another 6 weeks but do let us know how you get on with the slower tapering next time and all good wishes.

MrsO

This discussion is really useful as my mother has come down from 70mg dosage and is down to 5 mg. however she is suffering we believe from withdrawal symptoms, feeling very low and depressed. Is this a common

Symptom others have experienced?

Hi have not posted for quite a long time I still have PMR but only just I am now down to 2mg steroids per day and doing really well. Touch wood no flare ups for quite some time when I reduce I normally do it by reducing by 1/2mg every other day. My rate of reduction is stay on that dose for 2-3 months then if ok reduce again. It does take up to a month before I feel 'normal' on the lower dose. Keeping my fingers crossed i hope to be off them by the bd of the year, but who knows. I am quite happy on 2mg if that's what it takes. Very long journey I have had this fir almost 5 years. Good luck to you all

Hello Linda

It's wonderful to hear from you again and to hear how well you are doing. Yes 5 years is a long time with this illness but it can still be beaten as I finally proved after managing to come off steroids last July after 6 1/2 years with PMR and GCA, with 5 1/2 of those years on steroids. The tapering regime I followed from 5mg of reducing by just half a mg every 7 weeks, reducing on just one day of the first week, two days of the second, etc proved successful.

Do come back and post again, especially when you get to the end of the PMR road, as it's such a morale boost for everyone still struggling to know that there is light at the end of the tunnel. Stay well and good luck.

Hello rita28

I'm sorry to hear that your Mum is struggling with withdrawal symptoms and depression, having reduced from 70mg down to 5mgs. The 5mg dose seems to be a very difficult stage for many people . I certainly had problems at that dose and had to reduce back up to 10mg to get control of the pain.

When well our adrenal glands make their own natural steroid supply (cortisol) and when we go on high dose steroids they suppress that normal production. When we reach the 7.5mg dose that is roughly the equivalent of the normal amount of cortisol previously made by our bodies. As we reduce further, the adrenals are trying to get going again so it is necessary to reduce very very slowly at this stage and in very small amounts to give the adrenals chance to catch up.

It just may be that your Mum may be reducing either a little too fast or in too large steps. She may even find that she needs to increase back up to about 7.5 for a couple of months before trying to reduce again. I hope that helps but if we knew a little bit more about her symptoms, length of time on steroids, reduction method, etc, we may be able to help further.

Lucky Mum to have a caring daughter - do give her our best wishes.

Thank you so very much for your very helpful reply. Mum (85) had an auto immune disease which attacked her

platelets and red blood cells, she was perscribed steroids (70mg) in mid December and started reduction 9th January. She has been reducing by 10mg every2-3 weeks and is now down to 5mg. This really does seem to be a difficult stage for her in terms of feeling low/depressed and as you say we may have to increase them back up to 7.5mg. We are seeing her consultant next week so I'll mention it to her. Any advice you can offer is much appreciated.

Kind regards

Hello again Rita

Although you say that your Mum is being treated with steroids for an auto immune disease, her condition sounds quite different to that of sufferers participating on this part of the Pat.Exp site, in that, as you say, her disease affects her platelets and red blood cells, whereas our disease affects our muscles in the case of Polymyalgia Rheumatica and our arteries/blood vessels in the case of Giant Cell Arteritis. Although the treatment of choice appears to be the same for your Mum's auto immune disease as for our's, ie steroids, the difference appears to be that whilst we are generally treated with steroids for anything from 2 to 5 years and more, your Mum seems to be on a much faster reducing treatment. However, as she has been on steroids for around 4 months, I would have thought that she still needed to be weaned off them much more slowly at these lower doses for the reasons given in my earlier reply. Having said that, we're not medical people, and I really feel you need to be guided by her consultant as our experiences are purely related to Polymyalgia and Giant Cell Arteritis. I do wish your Mum well with whatever disease she is suffering, and do come back and let us know how you get on next week.

Hi all! I've never seen this thread before - the original was before I developed PMR but I just wanted to put a warning in.

In an early post Linda said her doctor wouldn't give her 1mg tablets as they weren't enteric coated so she was cutting the 2.5mg ones.

YOU MUST NOT CUT ENTERIC COATED TABLETS!

The point of the enteric coating is to protect your stomach from irritation from the pred. It isn't broken down by the acid in your stomach but the tablets travel further down the cut before releasing the pred and it is absorbed there. If you break the outside coating the pred is exposed to your stomach lining so it was a waste of time using the enteric coated version.

So by refusing to give ordinary white pred tablets the doctor actually created a worse situation - the fragmented tablets can irritate your gullet on the way down too.

Eileen

Hi I am still here given up work enjoying retirement. Unfortunately still have PMR but thankfully am now only on 1.5mg preds per day. I would like some advice on how to reduce below this amount as I don't find cutting in half very successful although I have a pill cutter. At present I am taking 2mg day 1 and 1 the following day . Also how long should I stay on this dose. It has taken me 5 long years to get to this.

Interesting reading! I've just managed to reduce to 1mg a day after just over 18 months - at which CRP level zoomed back to where I started! I decided to try an alternative approach with acupuncture, which definitely helped with the pain and after 4 weeks (& NO steroid at all) I was back to 15CRP (from 30). I then decided to do NOTHING for a month and see what happened. Not a good idea I don't think - back to lots of aches and pains and CRP of 28! My dilemma now is whether to do more acupuncture or more steroids! The TCM (Chinese) doctor says that they don't recognise PMR as a condition in China and that it nearly always comes from stiffness in the neck/shoulders which can have a multitude of causes. Certainly I felt a whole lot better after 5 sessions of acupuncture and obviously my bloods proved something was working! He feels that steroids simply soften the muscles, therefore alleviating pain, but not treating the cause - and of course there are a lot of side effects. NHS doctor says that all acupuncture will do is alleviate the pain (as do steroids) and not help with the cause in any way - but then no-one knows what the cause is!

Does anyone have any advice - anyone tried acupuncture?

Anne283

First, yes, I've tried acupuncture some years ago and it did help a lot with the pain, BUT what it didn't do was keep in check the inflammation which leads to the pain - which is what steroids do.

I'm not quite sure where your Chinese doctor gets his bit about 'softening the muscles' as I was told at the beginning that it wouldn't help with the inflammation but I would get pain relief which is what my NHS doctor referred me for (and it would have been interesting to find out what he thought was causing my leg pain, too - that couldn't be down to neck stiffness).

If you have raised inflammation markers again and the inflammation is left unchecked you are opening the door to some rather doubtful prospects, as there is still currently no known cause or cure for PMR and using steroids to tame the inflammation is the only current option available for most of us.

If you want reliable information on both PMR and GCA, then check out the other websites and information given at the top of this thread where you will find out that a high percentage of patients off steroids within two years have future relapses. There is current research into this problem.

Linda Williams

If you also check the other websites out you will find information on reducing down from 5mg including examples of how other patients have managed it (yes, it does happen!). In the meantime, the dose you are on is so tiny it doesn't carry any of the steroid side effects and at your level there is no need to hurry it.

Catie

Thank you Catie

That makes me feel better i think PMR may have gone but the effects of reducing steroids gives me muscle aches and tiredness I will just reduce slowly slowly and I will get there in the end. My blood results have been "normal" the last few blood tests. But even my GP says I am on a baby dose.

Linda

Hello Linda

I'm not sure it will help you at all, but my Mum came down from 70mg and the hardest time for her was the last 5mg. she suffered terribly with pains in her joints and muscles. it was a really slow and painful process and she also suffered from confusion at times but she pulled through and is doing really well now. she is 86 next week.

Rita