Having reached 0 pred after 2 years and 4 months of it's helping and having just had my 64th birthday I reflect that the month I managed without was very interesting with aches coming from random places almost every day and the most itchy skin blodges over my upper torso. However my last week was tortuous with the effort of standing becoming harder each day and my shoulders restricted in their movement. I thought my PMR had gone and really felt a sense of achievement when I stopped the pred. I hate pred and the evil taste of it. the two years the stuff has been in my body I guess that I have reached a love hate relationship with it. It allows me to play golf and to work but seems to nibble away at my skin and bones making me take all kinds of supplements to prevent further deterioration.
The repair for my unbelievable aching that stopped the aches going further was 5mg of pred. Every pain killer that had given relief stopped giving any and it became apparent that I was deluding myself it had gone. Back to bringing under control and stabilising before working out the reduction plan. I thought I had brought myself off slowly enough but despite change of diet it seemed obvious that my adrenal system wasn't kicking in. After a chat over the PMR helpline and the promise to send me a copy of a withdrawal plan I look forward to a more successful pred removal.
Onwards an Upwards and don't let it beat you!
Written by
Geskat
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You are doing so well Geskat, with much wisdom and insight to impart. You are clearly not letting it beat you. Remember the damp and cold will be contributing to the pain. Not to mention it's the silly season.
PMRpro quite rightly tells us it is not a race to zero but an aim to reach a satisfactory minimum dose that we feel reasonable on. 5 mgs might be yours and should have minimal side effects. I get itches too, I think it's PMR because the symptom pre- dates Prednisalone. Keep on keeping on! Good luck!
I had a month at zero this time last year . Had to take 10mg have GCA saw rummy end of November he told me to stay on present dose 6/7mg alternate days till end of March , winter not a good time to reduce.
It is the slightly slower of the two circulating and is being used in a clinical study in the north of England.
You are never reducing relentlessly to zero - you are looking for the lowest dose that manages the daily dose of inflammation that is created by a morning shedding of inflammatory substances in the body. This will happen as long as the autoimmune disorder that is the probable cause of PMR is active - and as long as it is active, you will need some pred. It doesn't matter how slowly you reduce, if it is still there, it will cause symptoms. For about a quarter of patients it goes away in a couple of years, but for half of us it takes up to 4 to 6 years and for some even longer.
As you get to the really low doses, if you stick at each new dose for 2 or 3 months you will be able to tell better if it is still enough - and that is important. You've gone back to 5mg, but it may well be that 2mg was managing it well. There are several people who got to 1mg and were fine - until their doctors said 1mg couldn't be doing anything so stop. Within weeks they had symptoms returning, just as you did. Those very low levels CAN be doing something - and they have next to no side effects. And anyway - it really isn't a race, people who try to rush off pred usually end up having to go back to a far higher dose than they had been happy at and losing all the perceived advantage.
" I thought I had brought myself off slowly enough but despite change of diet it seemed obvious that my adrenal system wasn't kicking in." - that has nothing to do with the PMR and there are no diets that will make adrenal function return any sooner anyway. You had obviously reduced slowly enough for the adrenal system to start working, you would have been downright ill far sooner if you hadn't as it has to start to function from below 7mg. You wouldn't have got way below 5mg without problems if it hadn't done so.
I am pretty much at 5 mg Pred, taking 5.5 some days and intend/hope to keep on 5 mg for a couple of months as I hate the short, dull, winter days & will try to reduce further in the Spring. However this love/hate feeling towards Pred seems to be overridden by the threats brought by Alendronic. A piece of tooth broke a couple of days ago and I saw dentist the following day. He said the wisdom tooth must be extracted. I know extraction is an issue but agreed to it as saw no choice. So far no pain or problems but I have read a little on AA and worry about when I can stop taking it, it remains in our body for 10'yrs and I am petrified about any future dental work and my dental health, and issues with the jaw & bone strength. Normally could I stop AA before I have reduced Pred to 0?
Many of us don't take AA at all. I have been on pred for over 7 years, my bone density has reduced minimally and is still well within the range that doesn't require medication. The real expert of bone density improvement without AA on this forum is HeronNS.
One of the things that is said with AA (if you read the data sheet) is that all dental work that may be required should be done in advance of starting taking it and that scrupulous mouth hygiene is essential while taking it.
Have you had a dexascan done? It is perfectly possible you don't need any more AA at all - ask your doctor for one if you haven't already had one done. If your GP is iffy about it - a few places in the UK do private dexascans for quite reasonable prices. But the AA is there in your bones and will remain there, probably for life, so you must always tell your dentist in the future too.
I told my Dr last week that I had stopped taking AA after reading up on it. I have started taking Vit K2 every day She has booked me in for a Dexascan to see if I really need AA, why didn't she do that when I was diagnosed with PMR in August 2015? Waiting for an appointment, see what the result is.
I had a dexascan earlier this year and it shiwed marginally osteopenia. Of course I don't know what the result would have been when I started AA a couple of years ago, so don't know if I am improving or deteriorating. Could I reasonably ask Dr for another degas an? My dentist is fully aware of my meds, both Pred and AA. After the X-ray he said he could do the extraction, rather than a hospital referral. In this instance it was not possible to know I would need this extraction and apparently it could result in an abscess if it wasn't dealt with. Plus the nerve was exposed and very sensitive and I couldn't not do anything.
If you have had a dexascan this year then there probably isn't a lot of point having another just yet - it takes time to get changes that are measurable on the dexascan - and in the UK at least there are guidelines for times between and a rheumatologist will block an early request without very good reasoning. You can't compare readings from different machines directly so going somewhereelse won't tell you if there is a difference. Although, that said, HeronNS has had a big change in a year.
However - what was your t-score when you say you were "marginally osteopeneic"? A t-score of between -1.0 and -2.5 is classified as osteopenia. A score of -1.6 is usually regarded as a density that doesn't require medical intervention. Mine is about that level - nothing would induce me to take bisphosphonates at that.
I was eligible for a followup scan one or two years after the initial one. They tried to cancel the scheduled one year scan, but I got it anyway. I'm not eligible again for three to five years after the second one. I think if my bones had shown deterioration rather than improvement there might have been a different recommendation, and they would have said I needed drugs instead of dropping that recommendation after improvement was shown. (I never took drugs, just nutrition, supplements and exercise.)
Many thanks for the words of wisdom. It is difficult to live with Pred. Not only is it the most vile and bitterest pill to swallow, I think of it as a poison I can’t do without. An insidious friend!
However the most important thing to remember is no matter how much pain you are in, someone, somewhere has more. Life is too precious to waste any minute. The older we are, the more important it is to learn how to cope.
As I contemplate becoming of pensionable age with achy joints reminding me of my sporting youth I also look forward to the greater understanding of life that the age brings with it and also reflect the friends who haven’t made it this far.
As the Monty Python song says,” Always look on the Bright Side of Life”
They obviously weren’t suffering from PMR at the time but it’s important to keep laughing when it hurts!
Pred is my best friend - it gave me my life back. And I know what I am talking about there because I had PMR for 5 years without it!
When you make friends with pred - or even just come to an amicable agreement - it makes the entire process of having PMR easier. Fighting it just doesn't work.
Geskat, I have never tasted pred! When I took the uncoated tablets, I put them into a mouthful of porridge or cereal and swallowed them straight down with a swig of fruit juice - at breakfast. Now I take the gastro-coated tablets and they, of course, don't taste at all!
I am 5 years older than you and am thankful to 'only' have PMR, as 2 friends have has strokes this summer and another friend of your age died 2 months after I was diagnosed.
Gald you are able to look on the bright side.
Me: PMR 18 months on 7.5mg tapering in 0.5mg stages.
My pred experience started from the UAE where you can only get uncoated 5 mg tablets. I then bought some 1mg off Amazon as the science of dissecting a 5 mg tablet too great on a simple tablet cutter. They were still uncoated but had the same vile taste. Not the most recommended method but the only way I could get the 1mg at the time. Since then I got back to the UK and my doctor prescribed the 1 mg coated tabs. Reducing with the 1mg much easier as I can reduce by . 5mg and the body more receptive. Back in the UAE my first Rheumy was an excellent Spanish lady who moved to NZ. The rest have seemed less informed. My reduction control has come through this site. Luckily I have a GP in the UAE who monitors my bloods and is prepared to listen about my previous unsuccessful reductions.
All this while also trying to reduce a golf handicap. PMR my personal excuse for not achieving much of a change but still some form of exercise.
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