Predisione

I was very interested in the reduction method for PMR I have had this for 12months now, started on 15 a day Miracle drug I thought, I was told by Reumey to be down to 4 by April 2014, got to 6 quite easily but after 6 weeks the stiffness, shoulders upper thigh muscles came back and ESR went from 13 to 16 within 2 weeks, I couldnt cope on 6, not sleeping, showering , probs severe stiffness etc. I automatically went back to 7 and after 2 weeks doing ok, however very keen to reduce, I have been lucky with weight and only put on approx 6lbs . I am now going to try the slow reduction method reported as it seems a great idea. Thankyou so much fellow sufferers.

Beatrice - a reduction from 15 to 4 in a year is unlikely to be successful. Have you seen the Bristol paper mentioned in this link to another post on this forum:

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

I can't give you the direct link - it'll disappear for ages!

The Bristol group take 3 months to reduce from 15 to 10: 6 weeks at 15, 6 weeks at 12.5 and then 1 year at 10mg. This reduces the rate of flare to 20% instead of 60% using most reduction schemes (like yours).

However, if you are fine at 7mg I suggest you stick there for a while to make sure the resurgence of inflammation is well under control. Then try the slow reduction - but even so beware, if the underlying autoimmune disorder is still active even the very slow version won't work so keep a close eye out for any symptoms.

Now you are at 7mg that is a similar amount to what the body produces anyway so most good doctors don't worry about rushing at a reduction at this stage. If you manage to get there, many like to keep patients at 5mg for a few months - that also seems to smooth the onward journey. I have finally got to 5mg after nearly 5 years - the weight has gone (oh, if only it had only been 6lbs!) but I have no diabetes or osteoporosis problems even after that amount of time and on well over 10mg/day for most of it.

Good luck with the retry - but don't feel you have failed if you can't get much lower. You've had a reminder of what PMR means! I'm happy to stick at 5mg forever if that's what it takes to never go back to PMR pain!

Eileen

Well I'm still feeling ok on 1/2 mg and a doc friend said I can go up if I need and still come down again , and when I said "the real mckoy it was to the chemist ,when they asked me if I wanted a cheaper brand lol I meant what the doc orders , lol and I didn't know there were different types , I don't like the stuff , sorry , anyway I need more exercize that's for sure , I tell my neighbours now I must put my own wheely bin out , the walk does me good lol lord they mean well I know , but I had one at my back door at 7 am , just checking on me , lol , I have other problems that I must see doc about next , anyway I still have my nanny nap through the day lol thanks everyone , its been an eye opener really , and Im thankful I'm not as bad as some I see , , or read about ,

Hi Eileen and Mrs O

Thank you for your response. I am responding on this thread with apologies for not getting things on the right one! Mea culpa.

"Is there any evidence that staying on 5mg for years prevents a recurrence?"

Response from Eileen . . .

"No - because the pred isn't doing anything about the underlying autoimmune disorder that is almost certainly the cause of the symptoms. PMR isn't the disease - it is the symptoms of the disease. The autoimmune disorder makes the immune system unable to recognise your body as "self" so certain cells start to attack your body in the same way they would invading viruses or bacteria. The illness you are diagnosed with depends on which part of the body is being damaged. What possibly happens in PMR is that certain arteries become inflamed and that disturbs the blood flow to the muscles - which are then unable to cope with being used so that even at normal levels of use they act as if they have just run a marathon and ache and are stiff. As long as the underlying autoimmune problem is there so is the PMR and you will need pred to reduce the inflammation and swelling that causes the pain. Luckily it often goes into remission - becomes inactive - and allows you to reduce the pred dose.

To complicate the story though, it is suspected that in some people the adrenal glands or the feedback system that controls them is not functioning properly. That may help trigger the PMR in the first place or make it more difficult to get off pred - and these patients might need a low dose of pred for a very long time, even for life. But they are the exception rather than the rule. Most people are desperate to get off pred and rush at it like the proverbial bull in the china shop. For most people, slow and steady reductions will allow them to get off pred after anything from 2 to 6 years.

Yes - feeling there is something you can control is very comforting isn't it. Low carb should help you not put on too much weight with the pred though!"

Thank you Eileen for this information. It really is a magical mystery tour isn't it? I wonder if, in some people, the adrenal glands never work at 100% again and that is why PMR can recur?

Tilly

Hi Mrs O,

I am moving this also from the wrong thread.

'I have put myself on a low carb diet to see if that helps. It is supposed to help with lowering inflammation and weight loss. If nothing else, it does make me feel as though I am doing something apart from just taking the tablets!'

Response from Mrs O . . .

"That is exactly the attitude that I adopted after commencing high dose steroids. I researched anti inflammatory foods and included as many of them in my diet as I could: oily fish (sardines (with bones - good for our bones which can be at risk from steroids), mackerel, salmon, trout, plus beetroot, avocado, garlic, turmeric. I also included known diuretic foods such as asparagus, garlic, fennel and melon to try and offset steroid-induced fluid retention. I reduced all refined carbs such as white bread, white potatoes (I substituted with sweet potatoes) and parsnips. These foods turn to sugar in our bodies and too much can lead to steroid-induced diabetes in at risk individuals. I avoided all processed meats and as much sugar as possible. I also reduced my coffee intake to special occasions - that together with sugar are known to stress the adrenal glands which are already being suppressed by the steroids.

None of this, of course, provided a cure but I became aware that if, for instance, I missed out on my oily fish for a week (3 helpings a week usually) I would notice increasing inflammation.

I see that you live in Surrey and Eileen has mentioned the support group I run. Do send me a 'Message' if you feel you would like to come along and share experiences with others 'in the same boat'.

As to whether "there is any evidence that staying on 5mgs for years prevents a recurrence", I doubt it, although some people do stay on this dose for life. The secret for me was staying on 5mgs for 5-6 months following a severe flare at that dose that incurred an increase back to 10 for a while. The 5mg dose had obviously been the lowest dose to contain my inflammation at that time so the previous advice to reduce by 1mg a month proved most unsuccessful for me at that stage. After the 5-6 months back at 5mg, I was again advised to reduce by 1mg but I thought "no way Jose" - if it hadn't worked previously why would it work now. So I reduced in a similar way to Eileen's regime above, tapering slowly over 7 weeks in just half mg decrements. Painfully slow, but it worked and I came off steroids just under two years ago.

Good luck with the diet!"

Thank you Mrs O for all this information. It is good to know that diet can make a difference and I will persevere with the low carb diet.

Bad news about the coffee though! Think I need a reduction programme for that! LOL.

I presume this forum has a private messaging system which I will investigate and send you a message.

Tilly

Private messaging: go to the top of the page and just below the green header is a grey bar with "My messages" towards the right hand side. Click to get the messages bit.

I don't think the adrenals not getting back up to snuff is the CAUSE of a second lot of PMR - but it can leave you needing a low dose of pred to function well and not feel totally washed out. But they can test for that - and many doctors do before reducing too far.

Magical mystery tour? That's a nice way of putting it!!! ;-)

Eileen

Thanks Eileen,

I have sent a message to Mrs O expressing interest in the support group and giving her my contact details.

I described it as a Magical Mystery Tour because although we all know that we are on the coach, our trip experiences seem to be so different and none of us knows at which stop we will be getting off!

Feeling washed out beautifully describes how I am feeling right now! LOL. I need an energy injection to get me moving. Reducing from 20mg to 15mg is not a happy experience! Just following doctors orders!

Tilly

Yeee-eees!I don't find it at all surprising that you feel rough after a drop of 25%! Don't let him force you into another similar drop - the top experts advised years ago not more than 10%. Even that is pushing it sometimes.

It isn't faster if all it does is cause a flare and you have to start again

Eileen

My doc says that the 20mg was just an experimental dose to confirm a diagnosis and the appropriate starting dose is 15mg so here I am.

The pain has - mostly - gone but I just want to laze about doing nothing, which isn't like me.

I can't say that I want to go back up to 20mg but I will if I don't feel better in a day or two and then start to reduce from there.

Not sure how I square that with my GP though as I would be going against her prescribing. She has been supportive so I don't want to fall out with her. It took three weeks to get an appointment so I don't anticipate being able to see her very soon so I will act now and explain later!

She can only put me on the naughty step!

Sounds like your GP knows a fair bit - but not quite enough! 15mg would have been enough to find out and that is the normal starting dose. Having chosen to start at 20mg she should have reduced a bit more gently - 17.5mg in between would have been helpful for example. You could try that rather than going back to 20 - providing you are on ordinary white pred tablets. If you are on the red or brown enteric coated pred you mustn't cut them but they are available in 5mg and 2.5mg doses. Any chemist will sell you a pill cutter to make it simpler to cut your pills. Enteric coated - alternate 20 one day and 15 mg the next until you can get some 2.5mg pills.

Don't worry too much about the "wanting to laze about..." - for some people that is the effect of pred. Others go a bit manic. You pays your money and you takes your choice.

Three weeks for an appointment? Dear lord! I hope you don't develop GCA in that case!

Eileen

Oh I wish that I had the manic variety! A case of beggars can't be choosers?

Thanks for 'giving me permission' to take lazing about as part of the problem. I have just spoken to someone I work with and he said much the same - health is most important and dust never killed anyone. I can't evidence that but choose to believe it! Ha, ha.

I have the 5mg white ones and I have a pill cutter. So, I will try your suggestion of 17.5. To be honest, I have just swallowed another 5mg but don't tell a soul! LOL.

I must look up the symptoms of GCA to familiarise myself. I think I would have to drive myself to the hospital which is 12 miles away.

What fun this is going to be!

Write this on a piece of paper and stick it on the fridge or somewhere:

"Dust is very patient. It will always wait for you."

I gave up housework years ago - the kitchen and bathroom are kept clean (noone has died of food poisoning yet) and every so often I have a quick dust and once in a while we get the neighbour's cleaning lady to come for a few hours. We have a very small flat - but it is very dry here and dusty as a result. But using a vacuum cleaner or brush goes straight for my back. Ouch - it isn't worth it.

Did you know that dust only gets to a certain depth and then sort of consolidates? You can dust every day and disturb it so it is still there for tomorrow. Or you can leave it to settle properly - and dust once a week with the same amount of effort ;-) But seriously, you are ill and one of the best ways of having a good quality of life with PMR is to ditch the non-essentials and do 1) what you MUST do and it is impossible to justify NOT doing, 2) what you like/enjoy and feel up to and 3) what you have enough energy left over to do. And learn to say "NO" - "I'm sorry, I don't feel able to do that just now..." - I will do it when I am better.

If you were to develop the signs of GCA and your vision was being affected - don't drive yourself. If you can't get a friend to take you, call 999 and tell them you are concerned you have GCA and your sight is dodgy.

You might enjoy the manic version - but my granddaughter is on high dose pred and her mother doesn't enjoy the manic bit at all!!!

They say a change is as good as a rest...

Oh I wish I could have a manic session every now and then! I had it initially and now I am on a lolling around one!

Oops! Just thought I would throw that in for good measure.

You're right about the dust, it settles at a certain level and, it is very dusty here too. [Currently pouring, don't understand why the wet weather doesn't dampen the dust down]

Oh how I love you all for your sane and sensible advice and most of all for the wonderful sense of humour which emanates from the posts.

Thank you everyone.

Dust - what is that? I will just ignore it. Only me here (widowed young but no longer young) so it matters not a jot.

I decided yesterday that the world wouldn't end if I put clean but un-ironed sheets on the bed. Don't laugh but this is a big thing for me. I will learn!