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PMRGCAuk
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Slowly reducing pred..not good this week.

Hi, I'll try to keep this short. I'm new to the forum. Got my diagnosis of Temporal Arteritis about 20months ago now. Rheumatology have struggled to reduce my pred, I'd get down to 20mg then the symptoms would start again, headache, headsore and jaw ache. They tried me on Azathioprine but my liver enzymes shot up, so then it was Methotrexate...I felt so ill on that and my hair started to fall out. I persuaded them to let me try Azathioprine again on a very low dose...6 days in of 25mg and my Alk Phos was 250 and Gamma GT 600!!! So it was off that. It was then decided to reduce my pred by 1mg a month. I've been doing ok and managed to get down to 8mg but since I reduced to 7mg last week I have felt awful...headachey, generally achey and extremely tired. I did have my flu jab last week and wondered if that would be contributing. I'm not due at clinic until January..as long as I get regular bloods they let me do my own thing but I'm not sure what to do here..persevere a bit longer or increase my dose again. I'm also on Alendronic Acid and Vit D3 supps but that doesn't seem to be very popular on here..can anyone tell me why? Sorry this is so long. Thanks.

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Welcome and sorry to hear of your plight. This is the place you will get great responses from.. Not meaning me but I can share my experience.

When I got to 20 mgs I started having break thru pains but because I did not know the slow method of reducing I continued with the bigger drops of 2.5 all the way down to 7 where I crashed and had to go back up to 20. I pushed past all the pain because I was on the race to get off thinking by then I would be all better but my body has another agenda.

From there I settled for a month then went to 17.5 and now I am at 16 mgs doing the slow method. I have the tiggling of the right side headache and hope it stays away.

Hope you get some good help and keep up the posting. Once I got out of the race to zero My stress level has leveled and I feel so much more in control if you get what I mean.

🍂 Linda

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Thanks for the response Linda..it does help to know you're not the only one with issues. :)

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With regards to alendronic acid, I came off that because I kept having some nasty symptoms on the days that I took it.The worst one was the nasty stomach cramps and it was followed by severe nausea and billiousness and then extreme headache. Unfortunately I cannot help with GCA as It has been determined that I do not have it. However with my PMR when the symptoms appeared to be returning I alternated the does for a couple of weeks to see if that would settle it. eg 8mg Monday, 7 Tuesday, 8 Wednesday and so on. If that worked then I would go down to the lower dose every day and stay there for a while to make sure it was settled. Hope that helps.

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You were very obviously reducing far too fast and in too big steps. You don't say how long you were at above 20mg - but there is evidence of inflammation still being present after 6 months on high dose pred (defined as above 20mg). So you need to be above 20mg for at least 6 months - but even that must be tempered by symptoms, symptoms must always be taken as king, you cannot reduce according to a proposed reduction scheme. Biology and medicine don't work like that.

This paper is from a top PMR/GCA rheumatology group of researchers in Bristol, now spread over the UK and even retired:

rcpe.ac.uk/sites/default/fi...

On p346 (the 6th page) you will find their reduction scheme for GCA for the first 5 months, then they continue with the reduction they suggest for PMR which is a couple of pages earlier. After 20 months, even without any flares which obviously will set anyone back a bit, you would barely be past 10mg since they keep their patients at 10mg for a year. Doing it this way they find their flare rate is 1 in 5 instead of the 3 in 5 found with "more usually used" reduction schemes - I suspect they mean the BSR guidelines which are considerably faster. They do say it should be tailored to the individual - but too many doctors don't notice that codicil! They think the pred has done the job at the start - it is just a matter of weaning the patient off the pred. No it hasn't, you are using it to manage the symptoms, a return of symptoms means you aren't managing it properly.

You are also now at a stage where your adrenal glands have to work again - so that could be contributing to how you are feeling. We "oldies" also recommend not to reduce at the same time you are adding in other things - like a flu jab! And above all - can you slow the reduction down a bit more? No reduction should be more than 10% of the current dose - and once you get to 20mg that is 2mg, at 10mg it is 1mg - and now below 10mg, 0.5mg would be better.

Or you can use this approach which has worked for many on the forums

healthunlocked.com/pmrgcauk...

But for the moment - at least go back to 8mg and see if you feel better. This isn't a race, 1mg here or there for a month or so isn't the end of the world. It certainly isn't a race you can win by forcing a reduction and letting in a flare.

Alendronic acid has a whole set of its own side effects, some very unpleasant if you are on it for a long time - and many of us believe it should only be given if needed. That can really only be assessed with a dexascan - and too many doctors hand it out like sweeties having been convinced by a superb marketing campaign at a critical stage of their careers. Evidence is slowly emerging that it is NOT the harmless miracle drug they said it was, it doesn't necessarily protect you from fractures and it can itself cause what are called "atypical fractures", mostly of the thigh bone, after longer term use. My dexascan after 3 months of pred was fine (it is felt the greatest change in bone density due to pred happens in the first 3 months), after over 7 years on pred my bone density has hardly changed and is slap bang in the middle of the normal range for my age. I would have been taking AA for that long for nothing had I listened to the original doctor in the UK who handed it out. Here in Italy it is not dished out automatically, we are encouraged to have a dexascan. You do need D3 and calcium supplements - and they are more often than not enough on their own. And AA only works providing your blood vit D and calcium levels were OK at the outset - if they weren't checked and sorted out the AA won't work anyway.

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Thank you so much for that info PMRPro. I will read those articles. I was on 40mg at the outset for about 6 weeks I think (can't remember exactly..it was a long time ago!!). Then reduced to 30mg and 20mg but had to go back up to 30mg twice and stayed on 20mg for quite a while. I'd managed to get down to 15mg by January this year and that's when they told me to reduce by 1mg a month, but it has taken me 10months to get to 8mg. I used to be a nurse so I consider myself to be quite sensible and have tempered the reduction if I didn't feel well but, as you say, it sounds like I've been reducing too quickly. You just need someone to tell you that and although my rheumy nurses are lovely they obviously have parameters to follow. My bloods are ok at the moment but I will slow down my reduction. Thanks again.

As far as the AA is concerned I haven't really had any side effects as such but I hate taking it. My bloods were Ok before I started it. I haven't had a dexascan since June 2015 though so maybe I should be asking for another. So glad I found this forum.

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Hi,

Don't need to add much to PMRPro's advice, other than say I was on AA for 4 years without any problems - susceptible to osteoporosis due to early hysterectomy. But as she says, it is not necessary or suitable for everybody. I am still on Vit D/Calcium - GP's advice even though I finished Pred 2 months ago, so you should be on that.

I found reduction very difficult from around 6mg down due to adrenals, so the slower you do it the better - 0.5mg a time and slow reduction plan, not overnight. Like you, very tired.But it does go when your adrenal finally wake up.

You must also remember the lower you get the higher the reduction in percentage terms, so I think it can be more difficult for some. We always talk about not more than a 10% reduction, but when you get to single figures It's always more!

If you go back up to 8mg and feel better, then why wouldn't you? This is a long term thing, the odd month or two isn't going to make much of a difference.

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I would only add that PMRpro contributed to the booklet 'Living with PMR and GCA'.

You can find out about it on pmr-gca-northeast.org.uk.

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Why is AA not popular? Don't get me started.

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Just an update from my post 2 weeks ago. I increased to 8mg pred for a few days but still felt 'ill' and the jaw ache started to reappear so I upped to 10mg. I would say I am just about holding. I wake up feeling a bit stiff and headachey then start to feel better, but by evening I am shattered again, general aches and pains including headaches and shoulder aches...oh, and randomly...heavy eyes, a bit like when you have a bad cold. The pred has affected my eyes badly..I have had 2 new pairs of specs in a year.

I was wondering whether to go up to 12mg and see if I felt any better. I'm due for bloods this week and I could call the rheumy helpline but I'm afraid they may increase me right back up to 20mg!!! That seems to be their answer.

Paracetamol seems to help with my symptoms during the day.

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Hi again,

Would say that you haven't reached a high enough dose to get a grip of the inflammation again - sorry. Another couple of mg may be enough, but it's difficult to tell. If you say paracetamol helps then maybe you are just about on the borderline and 12mg may be enough. I can understand you don't want to go back up to 20mg, but the longer you go on as you are the more likely that becomes.

I can't advise you on what level to take, but what if you rang the helpline and suggested either 12mg or 15mg and see what they say.

Good luck.

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Thank you so much for responding. I did ring the helpline today and was told to stay on 10mg for now but to get my bloods done tomorrow then they will contact me later in the week. I know in my head that I may have to go higher and I am getting there on the acceptance front!! It's a weird thing...I know that if I feel better on the higher dose then I just have to go with it...I'll just have to feel fat and hungry for a while longer....but at least I'll feel better!!

Thanks again.

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There is a lady on the Lupus forum who has lost 16lbs of pred weight in 7 weeks using Slimming World - it IS possible to lose weight while still on pred. She is still on oral and injected steroids - plus a load of other medications.

My own view (and I have lost a lot of pred weight) is I'd rather be cuddly than miserable and in pain!

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Haha....thank you. I'm starting to feel that way too.

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Ok,

Thought they might have told you to go up a couple of mg, but they may still when your bloods are through.

You are right, much better to go up a couple and feel better, but the doctors look at things differently - mind they're not the ones in pain!

Hope you get things sorted soon.

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Thank you.

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I think DL has hit the nail on the head. And like her I see why you don't want to go back to 20mg - but you need more than where you are and ignoring that fact may lead you into a proper flare that WILL need 20mg to get under control.

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Hi PMRpro, thanks for responding so quickly. The support on here is so great. I DO know that I may have to go higher to get everything under control and I will.....you'll see my reply to DL. Hopefully by the end of the week I'll be getting sorted again.

It's funny, when I started with this I was told I would have to stay on pred for a year, possibly two and it's amazing how this sticks in your head!!! I thought I was in the minority having all these problems reducing, compounded with the sensitivity to the DMARD's. It was only when I found this community that I reaiised how common a problem this is. It really does help knowing that there is someone out there who will respond to you and offer ore help and understanding.

Thanks again.

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Yes - loads of people come to the support groups or onto the forums thinking they are the ones who are failing because they can't get off pred. We've asked doctors why they say this 2 year figure - it really is exceptional to get off in under 2 years. They say they don't like to upset patients at the outset. There is one person at present who has been told 15-18 months for pred! When it doesn't happen, or they are forced to reduce and get into a real big flare they come here - and we have to explain it rarely works the way the doctors think. We do get the impression they are extending the time - which is something I suppose!

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