PMRGCAuk
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7mg :)

Well I completed my 8 - 7 mg taper on the 3rd March and now holding at 7mg for a few weeks.

The pain in my knees is still here, but Fenbid seemed to do a lot of work last night.

My shoulder "pain" is reducing, now I need to find a way to lower my right shoulder, the way I sit, not my shoulder itself.

A few more weeks at 7 and I'll start to think about taking the next step, can go to 6mg without seeing the doctor, but if I decide I need to go to 6.5 instead I'll need to get some 2.5mg tablets.

As some of you know I have an "interesting" pastime. Well one of the things I need to do for it has become a chore and quite hard work, so with permission from SWMBO I have bought a new piece of equipment Same work to be done, but 4 times faster, one happy chappy here today :)

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Woooooo Hooooo! Good for you Julian!

8 to 7 and holding at 7 is GREAT news!!!!

Fingers crossed that the downward trend continues and you get to 6 or 6.5 without any upsets!

Hahahahahahaha, in comparison.... I'm holding at 50mg! : )

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Melissa,

you may be holding at 50mg, but that is still a big reduction from 80mg.

Last time I was at this level it was under the doctors 40 weeks and reduce cycle, tried for 6 and hit 9 instead. Now I'm doing a proper taper and also taking a rest between reductions. I don't want to push for a reduction just to end up back where I was a few months ago. Also I think I have a block telling me I won't make it. The rest period will let me get rid of that as well.

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It is indeed! I'm not mocking it (really...) but in comparison it just sounded a bit silly! : 0 The grass is always greener, right?

I am here for 30 day (as opposed to 10days ) so maybe some of these crazy withdrawal symptoms will quiet down, leaving me in peace!

Have fun with your new equipment!!!!! {What's your pastime again?}

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Hi JulianJ,

Good news.

Would suggest from now on you do 0.5mg drops. Easier on the body - tapering wise and also to get your adrenal glands to spark!

If you use uncoated tablets you can cut the 1mg to get your 0.5mg - pill cutters from Boots, or the like are only about a £1 or so.

Keep up the good work, but no rush...in fact the slower the better until you’re sure adrenals are up and running.

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I'm on gastro resistant, will try 6mg in a few weeks, if I'm not happy will go back to 7mg and get a stock of 2.5's from the doctor.

Like you say, the slower the better, I'm not rushing and will watch how I feel when I cut back.

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How does one know when the adrenals are “up & working”?

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I think it’s more of knowing if they aren’t working! Extreme fatigue is the main problem, but then add in nausea, lightheadedness et al.

This may help

healthunlocked.com/pmrgcauk...

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What a stellar article. Everyone says “do this” this is the Plan, but seldom say ”how” to execute the plan. I feel empowered with this

Grateful,

Catherine

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PS

I’m starting at 5 not 7.5 but felt good there so hope it’s not too “late”. Also in the end she mentions dosage and 8am. But we also have the lL-6 thing so dividing the dose works really well, but doesn’t play into the every other day thing or the 8 am. Prednisone.

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If I recall this article was taken from patients’ experiences and just collated by the lady concerned. So as we always say somethings suit all, some suit individuals- so it’s a matter of finding what is best for YOU. Doctors don’t seem to appreciate we don’t all fit the so-called expert view.

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I tried to check her background but found none. So she like did a survey? Lots of technical words there.

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This is the original article, it’s about 12 years old - but still relevant although a difference illness

cssassociation.org/patient-...

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This sounds positive JulianJ. So you would take 4 one mgs and one 2.5mgs.?

I have left over 2.5 mgs and hadn’t thought of that, just my rickety, inaccurate pill cutter. Will try, after a little longer on my island of 7 mgs. Thanks.

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Yes, if I go for 6.5 that will be the way, can get down to 2mg mixing 2,5's and 1's.

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Julian, lovely to hear this happy news. We've had a couple of such stories over the last few days - Spring must be in the air, even if we are being warned of a winter weekend ahead!

If it were me, I would only reduce in half mg decrements from here on in, Julian - that will give those adrenals a far better chance of adapting/getting up to speed again with their natural cortisol production as the artificial product is slowly removed. Lots of good luck wishes - it sounds as though you've got a good handle on it with your rest periods built in.

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Good handle, well a lot better after being on here. So much good help and advice.

I may try 6 in a few weeks, but I will monitor myself very carefully and will increase if I feel an issue and hold until I get to talk to the doctor. it's good that he lets me decide my reductions and is happy for me to take holidays as and when I wish.

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I am concerned that my Rheumatologist will say that I had better take Methotrexate to speed up my reduction (2 years). I haven’t got a coherent argument against this move. I just don’t want to start with another drug and side effects. The devil you know etc.

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I'm sure others, with better knowledge than I, would agree that the reduction should be at your pace not theirs.

I've been on pred for about a year, thought I'd be off it in no time and then, like everybody else, I found that I was wrong and it takes as long as it takes, rushing will just cause other problems, I'm sure the aunties can give some pointers to information that could help you.

Good luck and stand your ground.

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Thanks Julian. Let us know how you get on. I wonder if I balk too quickly at withdrawal pains. Someone recently said they know it’s a flare after two weeks. I never wait that long. This week I have stuck to 7 mgs and my body seems to trust me again.

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Hi Jane,

I always found withdrawal pains came next day and lasted only 2-3 days. I think if they’d lasted any longer than that or came 4 or 5 after a drop I’d have thought the same as you - flare. For some people it may take longer to surface which is why I’m always a bit dubious when people are given a tapering plan every two weeks.

You know your body best, and no point in pushing it...we all know that.

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Thanks DL. In spite of spending an inordinate amount of time thinking about how I feel , I find my symptoms hard to read at present. I am pretty mobile with shifting pains, not severe, a constant dull headache and every morning I am convinced that I’ve got a virus, I feel so generally ill. This wears off quickly. The exhaustion continues and unrefreshing sleep is quite easy any time. I seem to have allergic rhinitis symptoms and my Psoriasis flared badly on my feet with bad heel pain. I am wondering if my body is fed up with Pred?

When I try to reduce to 6.5 my symptoms become more recognisably PMR like with stiffness and pain on the same day. I am dreading relating all this to my Rheumatologist tomorrow, it sounds so vague and to my ears like hypochondria.

Sorry to rehearse on you! Thanks for listening.

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Hi,

Sorry to hear that.

I would think some of that may be adrenal glands related (thinking back to my time), some is probably the end(!) of a long cold dreary winter plus your trip to Australia and all the emotions that visit churned up.

It’s not hypochondria at all. I think it’s also related to the fact that you’ve been ill for a long time, and chronic illnesses are much more difficult to cope with than people realise. Plus when you get to lower doses you expect things to be better, when actually they can be, and very often are, more difficult. So close, and yet still so far - it’s no wonder we all get down days, and that usually brings other physical problems with it.

Tell the Rheumy how you feel, he may not be able to do much, but hopefully he will confirm it’s quite normal.

Take care.

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Thank you that was helpful and kind DorsetLady, my Rheumatologist

is Sarah Mackie and I’ve just had word that she’s been taken ill so Clinic is cancelled. So I’m glad I’ve got you! 🌹

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I agree with DL - on all the points I think. I'm toying with 7mg - and today I felt like death warmed up in the morning and by the time we'd been into town and walked around a bit I felt as if I were wading through treacle!!! That happened last time I did more than a few 7mg days.

This has been a foul winter (even here) - and it is still going on. Yesterday I sat on the balcony and got a sunburn - today should have been a duvet day! Tomorrow will be better but not like yesterday and Saturday will be foul again. We fly to Malta on Wednesday - it will be upper teens and more sun but the forecast isn't good good. Just better.

GWS Sarah!!!!

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And thank all that is good for you PMRPro🌹

I know! (Dr Mackie) the message said “ taken ill”. I hope she’s alright.

I did FaceTime with the family in Australia last night, their early morning. Just watched the sun getting stronger and stronger as the children played in the garden. “It’s a bit cool today” they said, huh!

Little prem baby Rafe was one year old 15/3. You couldn’t wish for a more big,bouncing, cheerful, boy.

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Mine recently suggested methotrexate/leflunomide. But that is after 14 years of PMR and 8+ of pred! I argued the same - I feel well most of the time, when it goes pear-shaped I do know in advance and know what to try to get to avoid it. It is the delays that are the problem. I don't want to rock an already complex boat! And he accepted that. I don't think Sarah is entirely convinced about the use to "speed up reduction" - I suspect if she wants to use them it is because she has doubts about it being PMR.

But I think Eric Matteson's work is a big support against early panic about adding adjuvant drugs - I fit in a very different population.

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Thank you, it’s the registrar who raised it the last time I was there. I have been fairly text book until now. You go along in your own zone for ages and suddenly you have to be accountable. I am an unhelpful mix of stubborn and easily scared. Ho hum.

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It seems that tapering below 7mg causes many of use difficulties. I was diagnosed eventually with PMR May last year tapered easily from 25mg of Pred down to 7mg in Nov but since then I have been up and down marching on the spot between 6.5, 6, 6.5, 7mg. Every time I lower the dose after a week or so at the decreased dose my shoulders, neck and arms become achy and stiff, I am sleepy and lethargic. My Rheum would like me to be at 5mg by my next appt in May. Not sure thats going to happen!

On reading all the fabulous advice on this extremely helpful site it looks like my best way forward would be to stay on 7mg for maybe 4 weeks and then try a .5 reduction. Fortunately my Rheum has so far left me to self taper not sure for how long , at my last visit he mentioned adding methotrexate instead of Plaquenil but this is not a path I want to take.

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"My Rheum would like ..." - Im sure he would, so would we all. But if it ain't going to happen - what is he going to do?

Once you have got down to a physiological dose (below 7mg-ish) the mtx is unlikely to achieve a lot. You take slightly less pred - your body makes more cortisol... And the evidence is that it works best started within the first month - so why didn't they use it then?

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Thanks for your reply. I also have another autoimmune disease PBC- Primary Biliary Cholangitis to add to the mix, some meds are harder on the liver than others Methotrexate being one of them hence the Plaquenil. I have a liver biopsy planned for July to check on the progression after 11yrs into this journey. So have been able to delay any further conversation re methotrexate until the state of my liver has been established.

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Well - if I had a dodgy liver I wouldn't even countenance mtx. And I'd want to be on prednisolone (doesn't require liver processing).

May last year? And down to 7mg? What's he on about? PMR lasts a median of 5.9 years. Less than 20% of patients are off pred in under 2 years.

medpagetoday.com/rheumatolo...

gives figures for duration of PMR. You need something as long as the underlying autoimmune cause of the PMR is active - or the symptoms return. That's all the pred does, mops up the inflammation to allow a decent quality of life until it burns out. And apart from Actemra and time - nothing makes any difference to that.

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PMRpro is right: don't "even countenance mtx". A cousin of mine with RA had been taking mtx for some years. She has had to discontinue because of liver problems.

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Thanks for the sound advice. I think I will give the mxt a miss and go slow and steady with the tapering and enjoy my time on 7mg.

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If you have liver problems I wouldn’t consider mtx. I was on it for RD and had to come off of it as it kept sending my liver results haywire. I’m on plaquinel, which is much kinder to the liver and Benepali but Now I find the slightest thing and my liver results go up. Prednisolone would be the only way forward. It isn’t worth the risk of mtx. It’s a good drug for some but like most not for all.

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Thanks for your advice, Its tricky to balance several medical conditions, their meds and side effects along with symptoms and maintain some quality of life.

I will not be introducing mtx into my life!

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