Frustrated !!

This makes absolutely fascinating reading EileenH......... may I ask a question?

Having just spoken to my surgery this morning and been given the go ahead by my doc to put my dose back up to 15mg until I see her next week, I am totally perplexed as to how long I should be on each dose prior to the next drop and what it should be. I need to be 'armed' with information so I can be as informed as possible to argue my case.... having said this I have an excellent relationship with my doc and she knows me well.

I started on 15mg on Dec 9th......... this was dropped to 10 mg on the 1st Jan......... everything kicked back in and had to wait a week to see doc..... she put me up to 13mg....... did not control all the pain so a phone call later she agreed to upping it to 14mg asking me to reduce to 13mg last week......

I dropped, as requested to the 13mg on Saturday...... then horrendous pain in hands ( with some swelling on right hand) shoulders, arms, knees and ankles kicking in on Tuesday pm .... groin pain kicking in yesterday...... very weepy and down with it all and feeling 'ill'.....

So I need some advice....... I cannot go on like this..... you will all totally understand where I am coming from...... life is difficult enough with PMR and getting your head around it without having to cope with these fluctuations in dosages which, seem to me, to be far too close together for my poor body to cope. I am tired of pain It is making me tired, weepy and makes me feel ill.

What should I be looking at in terms of time between 'drops'?

I am obviously struggling to come down from 15mg......... should I be worried about this? Have other had similiar problems at this level? Or do you all think it is because of the original drop from 15 to 10 which has triggered these difficulties?

Reading the posts it seems to be at the lower end where people struggle not at the higher end?

:? Dear, Dear EileenH, you are incredible ! A fountain of knowledge and extreme patience. How do you manage to type such a lot of information ? I am so grateful. Although, I think in my head, I was having the idea that PMR would completely disappear from my life. I might as well now re-adjust my mind to having to cope with it for quite a longer time that I thought. The silver lining in all this, is the lovely ladies on this site. For me, totally far away from any local help, it is invaluable.PS. I had a lot of problem getting to post this. I was asked to sign in etc etc. and told my password was invalid. So I had to get an e.mail from THEM...and they gave me a new password ? I panicked when I thought I could not get back into the fold ! :roll: I am feeling calmer now. Love to all the lovely ladies on this site ! Granny Moss.

Granny Moss

I was careful to use the word 'recovered'. Eileen used the word 'remission' which is much better.

I would never ever use the word 'cure' as there currently is no known cause or cure for either PMR or GCA.

Which was the main reason I got out of my pram when I got GCA, as my mother had had both over 26 years ago and the medication was exactly the same for me as my Mam. In other words no progress at all.

What I have discovered so far is that

a) first described in 1888 by Bruce a Scottish Physician.

Mayo Clinic writes ' GCA & PMR were described separately more than 100 years ago'. But neglected. PMR & GCA finally recognised as a specific disease in the 1950s/1960s. (Pred invented approx 1949 -we were lucky).

Professor Dasgupta in his talks on PMR and GCA dates it even earlier.

b) PMR on its one can be a serious and incapacitating illness but not terminal

c) out of every 100 people who contract PMR 97 are women.

d) women were and still are not classed as breadwinners

I had wanted equal opportunity for everybody regardless of colour or creed and I then discover there is even inequality in illnesses. As to my small mind if the figures had been reversed ie 100 people 97 men and 3 women more notice would have taken, more research and a much higher profile.

I got out of my pram and met four ladies on this site, we got together and found two support groups in England and one in Scotland.

Outcome was that 25 patients from all over the UK met in London (all at their own expense) with Professor Bhaskar Dasgupta and determined that an organisation for PMR&GCA would be born. It was, 18 months later, and it is now a National Charity - a baby one. It will, with a bit of luck and a fair wind, get some funds, raise the profile and encourage research. Their are some good medical people who are working their socks off, with limited resources looking for cause and cure - it won't happen in my lifetime - but its a start.

How long does PMR and/or GCA last - well as somebody says I say and I do often \"How long as a piece of string\".

Granny Moss, if I misled you into thinking Gill was 'cured' and therefore got your hopes up I am sorry and offer my sincere apologies. It is a lesson I hope I have well learned.

Hi ! It's me again....Granny Trouble !.... I just noticed THEY changed my name ! From Mariarita (which is my real name ! to Margherita, which I have ALWAYS disliked !...How's that for today !....Dear Lady, full of the terrible pains. I have read your message. I have remembered ALL the pains and cry for you and truly very sad. If you can find a level of PRED that frees you from pain, stick to it for as long as it takes. Your body will guide you. I used to fear the drops etc, but got so much support on this site, I am now on 7mg x day and will stay on it until this nasty weather will improve. I have what I call \"shadow pains \" that I can cope with. I wish I could be near you and give you a BIG HUG. Love Granny Moss (87...) and still here :wink: I have been given longer to repent......my dissolute youth.....(only kidding !.) :P

You are so good at summing things up briefly Mrs K.

I wonder whether we should add to the fact that there is not much research into PMR/GCA, not just that it is women who get it predominantly, but also the age group?

I read that one of the NHS cutbacks may be hip and knee replacements, which surely must be for senior citizens largely, also gall bladder ops. - not so sure about the ages there. But if we are all living longer, surely to keep us mobile and in good health will save a lot in nursing and care homes? Short term expediency?

Wishing everyone better health today - and in the future!

Green granny

Hi Green Granny. I'm happy to propose you as Health Minister - you talk so much sense. And :yikes: I hope they don't cut back on knee replacements! My knee has been described as a 'car crash' by my consultant and he said he would replace it for me whenever I wanted (bit scared if truth be known and used the excuse of PMR to put it off for a while). I agree, we're a rather unfashionable illness in an unfashionable age group. Just off to visit a very sick best friend in hospital, so I'm thanking my lucky stars :star: :star: that I 'only' have PMR.

Have a good weekend everyone.

Lizzie xx

Green Granny

You wrote \"not just that it is women who get it predominantly, but also the age group?\"

e keep on arguing about this we are hearing of more and more in there 50's and early 60's. Just this week a 31 year old woman contacted us - she has been diagnosed with GCA.

As more awareness is being raised and the BSR issued diagnostic guidelines June 2009, GPs are being made aware of this procedure, the age range is going down and the incidence up.

Somebody, somewhere will eventually latch on to this and do a statistical analysis. What we do know is that we are amongst the biggest users of long term steroids.

Oh and our age group is the biggest block of voters in the UK and we are also the biggest group who actually vote and the people with life experience. I shudder at the 'youth in charge'. But then I am old and what do I know.

I've said before that I suspect that there are a lot of much younger women out there who have PMR to some extent but when they go to the GP complaining of the tiredness, stiffness, occasional joint pain etc that I had from the age of 27 (pre-baby no 1) after an (apparently) viral illness they are dismissed as neurotic when all the blood tests are normal. Or the diagnosis is ME (otherwise known as chronic fatigue syndrome) or fibromyalgia. I can certainly tick a load of boxes for both the latter and it was accepted for a long time it was probably ME. A new unit was set up in the northeast (Sunderland, I think) for ME and I asked to be referred - I was told it was for newly presenting patients and the referral was denied on the grounds they were only really able to tell you how to manage it, which I already did. However - I do wish I had insisted as I suspect the correct dx might have been spotted without me having to do the research and rheumatologist in the unit does seem to have a handle on these types of diseases.

Be that as it may: with the insistence of all governments that we will, in the future, have to work longer before we can retire this will become a bigger issue. The current average rate in the UK is about 2% of all women over 50 - the rate increases as we get older and by the age of 80 it is in the realms of 1 in two! In the past this is a disease that was generally accepted as an inevitable part of getting older. It will have been the more severe and incapacitating cases which developed suddenly that made anyone look at it all. The rate is higher the further north you go - triggering the ideas relating to vit D for one thing - but that it is complained of is also possibly associated with the longer colder winters making the symptoms worse. Something I find quite amazing in that context is that there are several biggish groups here in Italy who have done a lot of research as well as at least one in Spain. And here I only mentioned the symptoms of stiffness and fatigue to be asked immediately if PMR had been considered! The rate here is half that found in the UK. There are also active groups in Germany and Hungary. And frankly - my impression is they are looking for the cause rather than just trying out other drugs that might get us off steroids. If the cause is identified it makes finding a cure a possibility in the long run - but it is also very useful in developing treatments.

To add to the power of the workplace is the fact that many of us are highly educated and motivated women who are not going to just crawl away into a corner and shut up. MrsK and co have started - the rest of us have to join in and do what we can.

BTW - knee replacements: a friend will be coming over in a few weeks after having a knee replacement a few months ago. His doc in the UK is adamant that if everything proceeds normally skiing will not be a problem. He's certainly going to have a go. I have met several gentlemen who have had one or both knees done and still ski. If it stops you doing housework, on the other hand, that strikes me as a plus :wink: :lol: :roll:

I would hope that the \"cutbacks\" in hips and knees will only be in the form of not doing them for the patients to whom it will make no difference in terms of mobility (i.e. there are very elderly patients in wheelchairs who will never get out of that wheelchair even with a new hip or knee) or that they will go back to the old-fashioned prostheses which have been tried and tested and don't go \"wrong\" (and are now relatively cheap) rather than the new-fangled, \"improved\" (and expensive) versions which have recently cost both the NHS and their pained \"owners\" a lot in different ways. One type was made with a material which then destroyed the surrounding bone which meant pain and distress for the patients and a long list of revisions (replacing the hip joint) for the NHS. The original design has lasted up to 25 to 30 y

Hello fifties Girl

I am so sorry you are still feeling so bad As I have said before I was put on 20mg to start and my Dr told me not to worry if I had to go to 30mg to reduce the inflamation so Im sure this 15mg isnt set in stone though it does seem to be the guidelines

My ist bout the reduction was a s follows

20mg for 2 weeks

15mg for a month

10mg for a month

then reduced to 7.5 after 6 weeks

no problems

2nd bout bloods much higher

20mg 1 month

15mg 1 month 12.5 2 weeks

then 10mg for a month

Then alternate 10.7.5 as my bloods were below 5 for a month

I am sure if everyone else put their experiences on they would be different

But my reductions wer only done if my bloods were good and I felt OK My Dr said each time you know how you feel and if you dont feel well increase and get your bloods done again

I have forgotten if you have seen a Rheumatologist but if you havent and your Dr is struggling with this perhaps you should

So make sure when you see your Dr next week when she says how are you your answer isnt fine but TERRIBLE !!

Hope things improve

Best wishes

Mrs G

Thank you Granny Moss and Mrs G....... the information is very useful, even if only for me to see how others 'managed' their reductions and I am sure every one of you will be different.

I do see a rheumatologist ( although don't have a lot of time for him :roll: ) but not seeing him again until March when I have my first Dexa scan.

Problem is my doc is now part-time so is only about two or three sessions a week so apart from my monthly appt to see her which is pre-booked in advance, I have to resort to calling and leaving messages and either waiting for her to call me back if she is not in or if she is in, the receptionist managing to speak to her between patients and relaying a message back to me..... not ideal.

I hope when I see her next week I can really have a good chat with her and sort the dosage out so I am not left in pain etc etc

I don't know what I would have done if I had not been given details of this forum by my doctor...... many many thanks girls...

Forgotten who told me about Gillian from Peterborough but I have e-mailed her today........ many thanks.

Hope you all have a good week-end whatever you are doing

BettyE.... completely forgot to answer your ?Groin pain in both although worse in left for some reason....... the right one was usually the worst before diagnosis!

Why, what does this signify?

Hello mrs k

Just read your post about a \"31 year old woman being diagnosed with GCA this week. My friend's next door neighbours' child has been diagnosed with Temporal Arteritis--------not sure exactly how old he is but certainly not in his teens yet! I wondered if you had heard of anyone this young before?

MrsO

Thanks fiftiesgirl. Re groin pain Mine is in my left groin only except if I go really mad with housework ( not often ) and is sometimes bad and sometimes ok. I don't know what, if anything, it means. When poor Venus injured herself in tne Australian Open, I did wonder if my pain might be similar as I do have lower back pain which is new.. Hers was psoas mucle ( is that right, Eileen? ) I wish I had done more science at school!

Hi Fifties Girl

my Dr is only 3 days a week but 2 sessions each of those days

So i am very careful to book my appointments well in advance as they normally release the appointments 6 weeks in advance and they always keep some on the day appointments so if I neeed that I am on the ball at 8am !!

I have at times had to discuss my bloods with the Practice sister but she is fine also and her Father had PMR and he always upped his dose to cover his Golf days !! I hate having to go through everything each time with a stranger I was so lucky when I had my first bout just seeing her by chance She went on Maternity leave a few months before I finished steroids and I wasnt that keen on her stand in

When my PMR returned over 3 years later my Dr still remembered that it was always my CRP that was a more true reflection of how I was !! So you can understand why I appreciate her so much

Hope you have a successful consultation next week

Re groin pain when I tried to carry on with my normal level of Aerobics and things like Riding for the Disabled I seemed to get quite a few muscle pains including groin strains and I have now had to do lower levels of exercise I always used to climb through my post and rail fences to my horses rather than use the gates but found that would give me groin strains also so now I use the gates Perhaps you should have a think about if you are doing anything in particular that could cause this as I do think our muscles are damaged by this and steroids lead to muscle weakness also

Best wishes

Mrs G

Right - I knew there was something else I'd been asked 50s girl! Heck - steroid brain :oops: :roll:

First MrsO - the youngest person mentioned in the papers I've read was 24 (and male!). There are several references though to cases being found in people well under the 55 that was the mantra a couple of years ago when I was diagnosed.

50sgirl: have you got a choice at your practice? You do not have to see the person named on your card, you are entitled to see anyone in the practice. A doctor who is so difficult to get at is no use to anyone. I know several male GPs who are most upset at the women in their practices as they only want to work part-time, certain hours and have all their holiday in school holidays. I sympathise with the men to be honest - if as a working woman you want to be treated as an equal then you must take the rough with the smooth. But that's my personal opinion so don't anyone accuse me of being unfair or any such thing! :wink:

However - my suspicion would be that that the drop from 15 to 10 was far too precipitous and the inflammation returned full blast. I have said before that any single drop shouldn't be more than about 10% of the current dose - MrsO quite rightly queried me on that and I have mentioned the review paper that provided that evidence on another thread in the last day or so.

It was found, looking at several smaller studies, that generally, the more gradual the taper, the less likelihood there was for the symptoms to return. To some extent, once the initial freedom from pain is achieved it is difficult to tell whether it is that the dose is too low or whether you are having a flare-up of the disease process as the effect is much the same. The final recommendation to come out was that no single drop should be more than 10%-ish of the old dose. This doesn't mean to say it will take forever to drop the dose down to a more acceptable longterm level but that you should drop the dose by the smallest decrement you can manage and wait a couple of weeks before trying again - and NOT try again if you have any return of pain until that has settled. You can drop by 1mg by using 1mg tabs, 0.5 by cutting them. Or you can alternate the old and new dose over several days which has a similar effect. Think of it like going up or down stairs - if the steps are high it's difficult. If the steps are shallow it's easier and easiest of all is a gentle slope.

There have been threads on this - you've seen some of them. Steroid brain hits again but doesn't the northeast support site have a link to Ragnar's method of reduction? He used it at lower doses but the same principle applies at higher doses FOR SOME PEOPLE. If you drop a big percentage at one go it is very difficult to readjust if the pain comes back. If you reduce 1mg this week and you are fine after 2 weeks, drop another: rinse and repeat! But if at any time you have pain - wait. Pain that appears and goes away after a couple of weeks was probably because you reduced the steroids and you had pain because of that (it happens). Pain that appears and GETS WORSE over a couple of weeks is almost certainly to the dose being too low for your PMR as it is now - go back to the dose you were comfortable at.

Your doctor seems to have treated the steroids as they are treated for anything else they are used for ACUTELY - 2 weeks at each dose and then you are off them. That just doesn't work with PMR, it's not a cure, the inflammation isn't got rid of and you'll be fine (like with asthma). This is steroids for the long haul and slowly, slowly, catchee monkey.

The rheumy I saw grudgingly gave me 6 weeks of steroids: 2 weeks each at 15, 10 and 5mg. At 10 the pain was returning but still liveable with, at 5 it was worse and within 24 hours of stopping 5 I was as bad as before the start of the steroids. The pain had improved by 50% within 6 hours of the first dose so I have PMR - that is almost diagnostic. Going back to 5mg helped a lot but he w