Atypical pmr in need of advice

That sounds fairly positive! I know you don't WANT to take tablets, none of us do, but you do need them here.

Has the acid problem been with the ordinary pred or was it also there before? Looking back I probably had acid reflux with the untreated PMR - I had a permanent sore throat, irritating cough and couldn't sing any more. I put it down to whatever was going on - and a degree of GCA in the chest arteries as it is also a symptom of that.

Lodotra: on a dose of 16-20 you need 4 tablets a day, 11-15 you need 3 tablets, 10 is 2 tabs, 6-9 depends, 2 or 3, 5mg is 1, below 5 is 2. So it doesn't get cheaper as you get lower!

I'll try and find out about the Lodotra trial. You may find you do well with the enteric coated version - but it is a bit of a sod with the reduction!

Eileen

Eileen - did you mean it does get cheaper as you get lower?

To be fair to my rheumy the omeprazole was prescribed at the same time as the enteric coated pred - I started the Lodotra several weeks later.

I wasn't offered calcium and vit D but have a cal-in+ daily which is a yogurt with calcium and 100%RDA of vit D so hopefully this is enough.

I was a nurse and for the last 20yrs before I retired I was a health visitor in a deprived area. The work was challenging and rewarding and enjoyable until it was deemed that form filling, box ticking, attending endless meetings etc was more important than doing the job we were trained to do.

So I can understand OH wanting to escape the system - what did he do?

Pmr/gca is not something I ever came across in my work so this is a learning experience for me. You clearly have a wealth of the knowledge on the subject, thank goodness for us newbies - are you medically trained?

Barbara

No - it varies in price depending on whether you need 1, 2 or 3 tablets to make up the dose since each strength costs the same: if you need one tablet it costs £x, if you need 2 it's £2x and so on.

If you are on enteric coated you shouldn't need omeprazole -when they got iffy about giving enteric coated pred as it was more expensive the solution was to give ordinary pred plus omeprazole - which itself causes problems if they bothered to listen to the patients. Then the drugs companies put up the price of ordinary pred - so the price differential almost disappeared.

OH was head of a medical physics department, his own field is vascular medicine, amongst other things he developed a way of predicting whether you could get away with a below knee amputation to preserve better limb function by measuring the oxygen levels in the tissue using a device he "invented" which led to a 97% success rate :-). But it got more and more difficult to do research - which was the sweetener for the admin rubbish. No time, no money.

I've had PMR myself for 10 years, 5 undiagnosed for me to learn about how you can manage without pred and the last four and a half years I have been on 4 different versions of pred. I have a physiology degree and used to work in biochemical medicine in the lab and have worked in research with OH as well. I canread medical papers almost as well as medics - better than a lot of them ;-). I've read more about PMR than most too!

So - I impart what I have learnt via the forums. Keeps me out of mischief in semi-retirement! I'm also now involved as a patient rep in research.

Eileen

Yes your right there are some tablets we do have to take as its not in our interest not to.

I had the problem with my throat, cough and trying to clear my throat before the pred it's just got worse since I started taking it. I saw the consultant about the reflux about two years ago who confirmed it had returned and put me on Rabprazole but also said the hernia repair and the valve he had given me were both as should be. I have been taking medication since. Since this stated I have told my GP my chest hurts when food goes down but he just said it was the acid.

Thanks for the lodotra information it will be very useful. I'll look into it and if its affordable lets see how easy it is to get started.

Elaine

Hum - I think I'd want to see my consultant again. Just in case - I have a problem with GPs who'll tell you things they can't see are OK.

My GP wants me to double the dose of the Rabeprazole , I've given it a go and now have diarrhea which is what I expected. Next appointment ill request to see the consultant again.

Eileen I had a really good time last weekend , we went on a Pullman train trip to Scotland and I wasn't too bad. Yesterday and today I've been so tired sleepy and around my eyes are puffy and half shut. Not sore or sticky though. I hope you don't mind my asking but any ideas on this.

Elaine

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If you were away for the weekend that could account for the feeling so tired. I had puffy eyes for a long time and I suspect it could be fluid retention from pred plus (in my case at least) weight gain. Now I'm on a much lower dose of pred I have a face again - cheekbones, collarbones and eye lids :-)

Make your GP work for their living - ask them! Oh - is it just face? I found I had fluid retention when I was eating out much on holiday. I use no salt in cooking - and of course caterers do. It always took a few days to settle down again when I got home.

Good luck though with the rest - taking medications is bad enough, when they have horrid side effects

Actually now I think of it , my watch is tight and my ankles are a bit swollen and hadn't used to be. I have put on nearly a stone and together with the acid problem I feel like a balloon! I have lost my chin and almost cheekbones but hopefully one day they will return.

I will do just that and try to get an appointment tomorrow. Thanks Eileen .

Elaine

Hi the results of my dexa scan arrived and all is normal, not even any sign of osteopenia, which is great news considering that anyone over 65yr here and taking prednisolone is automatically prescribed alendronic acid - so glad I insisted on having the scan first.

Why is it assumed that once we turn 65yrs we all start to crumble??

It's my good news week because my inflammatory markers are down as well, so I will continue on 13mg until they come down even more before thinking about reducing again.

Yes I have taken heed of all the advice about rest and pacing myself and I must admit that at the moment I feel quite well, even the achy shoulders are not too bad - let's hope it continues.

Barbara

Quite Barbara! I would love to know if the assumptions are based on our mother's generation who, although they worked hard at home, probably didn't pound the stairs at work instead of taking the lift (at least, I assume all hospitals were like the ones I worked in, if there was a lift it wasn't for mere working mortals ;-) ) and were very unlikely to still be playing tennis (no, not me), going to the gym or even skiing at 60! Even with PMR I have a bash at more such things than my mum did at the same age. TBH - I don't think she'd ever had a pair of shorts or a swimsuit in her life!

I'm about to write a short article about AA - thank you for providing more evidence it isn't a given we need it from the start.

It is thought that there should be fewer side effects with Lodotra since it is released in the body the same time as cortisol is secreted and it also felt it should require a lower dose to achieve the same effect. It is nice having someone who knows what it is though - finally someone to compare notes with :-)

Yes now is the time to be grateful for the miles of corridors and streets pounded during our working live - now we reap the benefits (even though at times it was totally exhausting!!).

I would be very interested to read your article about AA if you will let me know where and when it will be available.

Are we the only 2 people you know of using Lodotra - maybe when the clinical trials are completed the situation might change, although having said that the price is always going to be a sticking point for general practice.

That I know of yes - it is used in Germany for both RA and PMR. I don't know anyone else here with PMR but the rheumy consultant uses Medrol (methyl pred) and obviously hadn't come across anyone having real problems with it - or no one complains here!

I've sung its praises and a couple of rheumys were very interested - but any of the things they are currently trying out are far more expensive than the pennies that ordinary pred costs. Of course, if they can show that a lower dose is effective and long term side effects are reduced as a result they may get it accepted. In terms of PMR it is all I take other than calcium/vit D - no PPI, no AA - what other rubbish do they hand out like sweeties? For me - no weight problem, no (pre)diabetes. Don't know what the cholesterol is doing now.

The purchasing power of the NHS is pretty high - it won't cost them what you are paying of course. However, one lady has tried using enteric coated taken at night - it also usually takes about 4-5 hours to release - and it seems to be not bad. It would be interesting to see if that would be more reliable if taken with/soon after food like Lodotra which doesn't release the same if taken on an empty stomach. Of course then you have the problem they say it isn't cost-effective to make 1mg enteric coated which makes the reduction a pain - and I imagine that is part of the reason for the high price of Lodotra.

Barbara, I have been diagnosed at long last with PMR and after reading as much about it as possible have sent my rheumatologist an e mail asking if I can take Lodotra, I will fund it, he has answered that he rather not as he has only heard it used for RA, was your rheumatologist happy to prescribe it. thank you