Atypical pmr in need of advice

Welcome Barbara!

I see no reason why he should be "not sure about Lodotra" - and there I am probably unlike most people in the UK. I too am on Lodotra and I think it is brilliant. I would also dispute "atypical" - what you describe would fit a lot of PMR patients, the shoulder pain/stiffness often comes later.

Why are you reducing 2mg at a time? That is far too much and is unnecessary with Lodotra - they provide 5, 2 and 1mg versions for reduction purposes. It is far more reliable than enteric coated - and you can reduce 1mg at a time which you can't with enteric coated.

Many doctors like to check the ESR/CRP for patients where it works - and it sounds as if it does for you. I would say you need to stay at 15 (or even 20) mg for longer until your ESR/CRP are down to something more like normal levels (i.e. under 25 at least, preferably lower). If you still have a high ESR you still have inflammation and you will achieve nothing by trying to force a reduction. You sound to have a lovely GP and - to some extent - a sensible rheumy.

The pred has cured nothing - it is controlling your symptoms and it can only do that if you are taking enough. Most experts would say start at 15 for 6 weeks or until the symptoms are under control, some people need 20mg. Your inflammation was increasing, it wasn't under control - but you still reduced and you also obviously don't rest - no wonder you aren't improving! At least go back to 15mg and work from there. I also think you should be reducing by not more than 1mg at a time - and you will almost certainly do better with a far more tapered drop. I take about 5 weeks to reduce by 1mg with the Lodotra. This has the advantage of making pain due to steroid withdrawal far less likely - so the water is far less muddied by the pain.

It's a hard lesson to learn - but here you must be at the centre and you must learn to accept that, for the moment, you are ill and you won't get better until you reduce what you are doing. You cannot force this because it will leave you exhausted and in pain. Loads of people think they can get away with working/babysitting/housework/whatever - and eventually realise it isn't working. Plan a daily rest, avoid the activities that make the pain worse and you will find a massive difference. As long as the inflammation is continuing it will continue to make you feel ill - is that what you want? I doubt it somehow.

If you want I will give you the reduction scheme several of us have found works well, it is being tried by a consultant too and so far it has worked for his patients. But at the moment you need 15mg for a few weeks with blood tests every couple of weeks - once the ESR has stabilised at a low level you can start to think about a VERY gentle reduction.

Sit down and put your feet up - no cleaning, no rushing around after grandchildren. You wouldn't be doing that if you had proper good-going flu would you? You might not LOOK particularly ill - but you are I'm afraid and if you abuse your body too uch you could end up being far more poorly than you are now.

Keep in touch now you have found us - and ask questions. I may sound quite fierce but I have had PMR for nearly 10 years, 5 years with no pred, and I have learnt the hard way plus hear the stories of members of 3 different forums. The story is always similar.

Eileen

Such good information Eileen...I had myself in relapse all the time going on 2 years until I got this message and listened. It is the only thing that works.

Hi Eileen

Thank you for your prompt reply.

It's reassuring to know that my pmr is not as atypical as the doctors seem to think.

My rheumy is unsure about Lodotra because he had never heard of it.

I changed to Lodotra after reading your experience with it. I now sleep through the night again and in the morning I have only minimal pain and stiffness. As I said here in the UK it is very expensive, can you say how much it costs in Italy?

I would be grateful for the reduction scheme you recommend and can you say where the consultant is based who is using it.

Thank you for being "quite fierce" I probably needed it along with most newly diagnosed pmr sufferers - we are our own worst enemies.

I think the biggest problem with this condition is accepting that we cannot do what we used to do, even if we feel well and have minimal pain, because it will come back to bite us.

Thanks again

Barbara

Thanks gerri - it is something we fight about all the time. You wouldn't believe how many doctors really think that once we are on pred that's it - everything back to normal! And they tell patients that. I was part of a research meeting recently and there was a sort of gasp as we patients pointed out it is an ongoing problem - the tiredness and pain DON'T disappear. There is a fantastic improvement with pred, yes, but not everyone is pain-free and certainly by no means everyone has a smooth journey. The GPs appear to know nothing, often aren't willing to learn and patients are almost NEVER told they must really cut back on what they do to get better quicker.

The RHEUMY hasn't heard of Lodotra? Oh for goodness sake - it is already licensed in the UK for use for morning stiffness in RA and is undergoing trials for use in PMR! They're quite happy to do trials using biologics - which cost heading for 20K per year and there is NO chance the GP funders will thole that but won't offer a better formulation of pred - sometimes I could weep!

Here in Italy I can have it on prescription so it doesn't cost me a bomb - 2 euros per prescription so at most 6 euros a month. The price on the pack is 27.84 euros - so depending on the daily dose cost per month then is anything from 28.74 to three times that! It was my GP here who suggested it - I had been on Medrol and to be honest it caused me so many problems I was ready to give up. I went from 20mg Medrol which was doing not a lot to 15mg Lodotra - and have reduced steadily over the last 18 months, lost 33lbs in weight and feel well at last (still have aches and pains but feel different). This reduction scheme is similar to one used by a German doctor who was quite horrified at the UK reductions apparently - Lodotra is used a fair bit in Germany for PMR I gather. It was developed there by a German company after a study showed the best time to take pred is 2am to achieve the highest blood level at 4am and circumvent morning stiffness altogether. Of course - I assume that is why it isn't well known in the UK, they only listen to the USA and it's only just being looked at there (doesn't speak with the right accent ;-) )

An (almost) fool-proof reduction scheme:

To drop 1mg:

New dose for one day, old dose for 7

New dose for one day, old dose for 6

New dose for one day, old dose for 5

New dose for one day, old dose for 4

New dose for one day, old dose for 3

New dose for one day, old dose for 2

New dose for one day, old dose one day

You are halfway there, 1/2mg reduction!

Old dose for 1 day, new dose for 2 days

Old dose for 1 day, new dose for 3

Old dose for 1 day, new dose for 4

Old dose for 1 day, new dose for 5

Old dose for 1 day, new dose for 6

Old dose for 1 day, new dose for 7

Take the plunge: new 1mg lower dose every day.

Whether you then stick at the new dose for a few weeks or just start on the next reduction is up to you - and what your ESR/CRP says if that applies to you. MY ESR has been under 7 the entire time, even when I was immobile. CRP is also normal.

A consultant in the northeast of England has been trying it after being shown it by one of the ladies who started their support site and groups up there. He's admitted he finds it works! You can stop at any point and mark time for a bit if you start to feel wobbly, you can identify far more easily what is the lowest dose you can cope with AT THE MOMENT and you are far less likely to have a flare. Having a flare just means you will have to go back up - and will have lost the benefit of the lower dose you headed for but it failed.

And yes Barbara - once you learn to accept things have changed and learn to accommodate the PMR, disappointing as it may feel, you will be able to achieve far more. A rest in the afternoon means you can do something nice in the evening if you take it gently - if you don't you will probably be like a bear with a sore head, you will hate yourself and others will hate you to put none to fine a point on it. You will become the miserable old invalid - not a nice thought is it?

Where are you? There may be a support group nearby. And for a laugh (if you want one) go to the northeast PMR GCA UK support forum at forumup - links here:

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

We're all a bit loony I suppose but we chat, share photos of pets and gardens and holidays and generally thumb our noses at PMR and GCA. :-) And share experiences and advice too of course.

Eileen

Hi Barbara

It's lovely to hear from someone new and as you can see Eileen is there to offer fantastic support straight away as she seems to be there for everyone which is very welcome to us all.

I was diagnosed with pmr and possible GCA in December and have reduced to 20mg .it also took a while for me to accept the difficult lesson of resting and without the support and information from Eileen and others it would have been a lot more difficult.

It's seems I read very similar stories over again and this a condition which seems to have a mind of its own and.

I notice you take Lodotra, my GP said she'd never heard of it which is a pity because I suffer from side effects from medication in general and the pred has certainly been challenging.

Anyway welcome, and look forward to reading your posts.

Elaine

http://www.medicinesresources.nhs.uk/upload/documents/Evidence/Drug%20Specific%20Reviews/NMPLodotraJune2011.pdf

https://www.medicines.org.uk/EMC/medicine/23778/SPC/Lodotra%C2%AE+1+mg+2+mg+and+5+mg+modified-release+tablets/

http://www.pmr-gca-northeast.org.uk/research.php

"The information below on this research page was updated by Professor B Dasgupta in March 2012...

6. Clinical trials of delayed release Prednisone (with Lodotra) in GCA and PMR. Steroids timed for release at the time of the maximum elevation of inflammatory substances in the blood early in the morning may be more effective in the treatment of symptoms of GCA as well as PMR - such as early morning pain and stiffness. Early morning pain and stiffness are important causes of disabilities in both conditions. Improvement in these symptoms will influence quality of life, and may enable earlier withdrawal of steroids and reduce side effects. The GCA trial is shortly due to start in Essex. The PMR trial is worldwide and will start mid- 2012"

I do get a bit annoyed about GPs who dismiss a patient with "never heard of it" without even employing Google!

"It's seems I read very similar stories over again and this a condition which seems to have a mind of its own"

It certainly does Elaine - it comes when it wants and it goes when it wants and there is not a lot you can do to hurry it out of the door!

Night all!

Sorry - wasn't thinking, forgot I wasn't on one of the other forums where I can post links. It was a set of references for Elaine's GP and saying I get annoyed about GPs who dismiss patients with "never heard of it" without even employing Google!

It'll arrive sooner or later, with or without the links! Just google Lodotra!

Night night!

hi everyone , just had a read of these comments , and cant believe there are so many suffers out there , im only taking 2 tablets a day , 1 is for blood preasure , the other is 1 mg prednisone , im 84 and never was a pill poper , i faught against taking prednisone but was told i had to , now that was 2 years ago in coming august , this morning i have NO pain ,just so exhausted , ,maybe that could be side affects , or age , i came down slowly off the pred . but i still think it was my diet that helped me , ,,i do feel sad for all suffers out there , in fact i found the pain i had from ross river fever was more severe than the poly. but it lasted only 7 weeks ,and i only took natural healfood for that , , im having an x ray on my heel on friday , now that is to eliminate a spur , this pain is only when i get off the bed and put weight on it , and it goes away when i start walking around , so sounds like maybe 2 things , ,circulation , or the polymy. is working its way out my feet lol , sorry , my old humour again , gee what can i say , i doo take some valium to get to sleep sometimes and panamax if i have a headache , , but mainly i eat and drink healthy , xx

Hi everyone, I just wanted to add my support to the 'slower reduction' plan - I have had two relapses which was very depressing, then I read this forum and decided I would go slowly slowly - and it seems to be working. Anyone in mid Wales/Aberystwyth area want to form a support group? Eileen you are a such a fab source of support and information thanks so much.

Eileen I live in Gtr Manchester and I know there is a support group based not far from me, I will be contacting them soon.

Thanks for the information on Lodotra I think it would be much less expensive for me to move to Italy as thecost of the tablets here is £120.15p for 100 which is enough for 1 month depending on the dose.

Hi Elaine I also found the pred challenging so changing to Lodotra has made a huge difference to me. Unfortunately gps won't prescribe it on the NHS because of the cost.

Thank you all for your wisdom and support

Barbara

Hi Barbara,

That's exactly what i was expecting to happen but I will ask my GP this afternoon just to see what the reaction is. At the moment I am on 20mg just about to reduce so i dont think it would be affordable for me at present.

its so annoying that everything comes down to money and not the individuals needs, why am i surprised !

thank you fir the information, I'll let you know the outcome.

Elaine

I was told recently that they are looking at a biologic drug in PMR - that costs in excess of 10K a year. Repeatedly the trials they are looking at are for drugs far more expensive than pred - which in its bog-standard form literally costs pennies. But they refuse to look at using pred better - or to allow us better forms of pred that are more expensive but cheaper than the fancy stuff! It makes me really angry. Not to mention a bit p'd off at the research bunnies in their ivory towers.

Barbara - yes, the maximum per month (up to 15mg at least) even if I had to pay for it would be just under £70 here. Rip off Britain again! I'm not intending returning to the UK any time soon believe me!

I know omeprazole is not particularly expensive - about £20 per month - and the argument has been give it and ordinary pred to avoid gastric problems instead of enteric coated pred which costs more. But then you've added another set of side effects and increased the risk of osteoporosis since omeprazole can cause that all on its own, never mind with pred. So you add in a bisphosphonate which costs about £1 but can have horrid side-effects long term as well as short term. And you need the calcium and vit D tablets at £10 a month. Anything else? The more pills a patient has to take, the poorer the compliance and risk of mistakes, especially in elderly frail patients. The more pills a patient has to take, the greater the risk of side-effects and interactions - because trials are not done in poorly patients taking a sack full of pills, they are done in healthy people taking just the pill on trial.

There is evidence that over 5% of all hospital admissions are due to drug-related adverse events and 5% of those patients die, accounting for almost 0.2% of deaths overall. The figure amongst the elderly is far higher. But they dish out pills to PMR patients like there is no tomorrow without thinking what they are doing. I've suffered - I spent 3 weeks in hospital and 9 months on crutches because someone gave me a quinolone antibiotic while I was taking Medrol - if I hadn't realised what was happening I could have had a snapped achilles tendon requiring major complex surgery and a long rehab. There were other repercussions as well. Response from the GP: "On, I know it can happen. I've never seen it though!" You have now!

Oh POOH!!!!!!!! I suppose I'd better stop this rant before I blow a gasket ;-)

Eileen

Eileen you've jumped on my favourite hobby horse re: medication. I was told I would need bisphosphonates to protect my bones - I declined and insisted on a dexa scan first which was done last week. If the results indicate osteoporosis only then will I consider the options.

I was also advised to take omeprazole to prevent gastric problems, again I declined as I don't have a problem and I take the Lodotra exactly as instructed, with food.

The money I have saved the NHS by not having these medications could have gone some way to paying for the Lodotra but I know the system doesn't work like that unfortunately.

I agree with you entirely so many people are over medicated and when they have side effects more medication is given to counteract the side effect costing the NHS even more.

While I'm having a gripe I'll just add one more - I have paid into the NHS for over 40 years and worked for the NHS for 40 years and taken next to nothing out of the system and now when there is something that really works for me I have to pay for it myself !!!

Elaine - I look forward to hearing what your gp has to say

Barbara

Gah - you shouldn't NEED omeprazole if you are using Lodotra - it isn't absorbed in the stomach! It's like the enteric coated stuff - if you eat something it's a hell of a lot further down the gut in 4 hours than the stomach. Dear lord - where did they learn their human biology!

Here if you have PMR you are given pred. And calcium and vit D. That's it. Unless you need it. The selection of drugs available on prescription is fairly restricted but it does include Lodotra - but not omeprazole! If i wanted to take that I'd have to pay for it. We don't really get statins unless some twerp thinks we should - and even then you pay for them! I took them for a couple of weeks - never again and the cardiologist was fine about it. You'd think she'd be bothered if they really were essential but it wasn't her who'd panicked..

What did you do? We emigrated here 4 years ago when OH decided he couldn't stand the NHS as it was becoming any more.

Eileen

Well I saw my GP but not the one I have been seeing, I explained the problems I have and she listened, went through my notes on the computer then asked when my last appointment was saying I should really be seeing my GP every two weeks. Which I haven't!

She didn't know anything about Lodotra but looked briefly at the literature saying I would have to pay for it even though she didn't seem to think it was right.

She wants me to double the Rabeprazole to get the acid under control as it is burning my throat but I'm not sure about that and told me as did you to take 17.5 mg of pred for two weeks then see the GP again. Without me asking she gave me the enteric coated tablets.

She admitted she didn't know enough about this condition because she has only had three patients in a year with it.

So I take pred, Rabeprazole , vit D and pravastatin. She said my cholesterol is down to 6.1 and vit D has gone up but I have been taking these for a while.

I really don't like taking medication if I don't need to but sometimes thers no choice.

I'm coming up to retiring in August when I'll be 67 and I too feel annoyed that I too have worked for 52years and payed all that time but still have to pay when I need help.

There's our NHS for you.

My husband has said he would pay for lodotra if its going to improve things for me but I would need to know how many I would need and how much it would cost. So it's a maybe at present.

Well I'll just see how things go from here

Elaine