How the hell does one tell the difference?
My bloods are in the 'normal' range (ESR 22, CPR?) but after nearly 4 years of PMR I am still questioning. Do I really still need Pred??? How can you tell? (I'm on 6 mgs at the moment).
You tell by reducing the dose very slowly even further and seeing if the symptoms return. Pred has no effect on fibromyalgia - if pred works it isn't fibro. Old age? Well, only you can decide that really - are the pains PMR-type pains that go away with pred? Then most likely NOT old age alone. A lady on a nother forum has just stopped pred. She and I were like twins until last summer. We got to 4mg and then I got stuck. She has continued to reduce 1/2mg over 6 weeks or so ever since, always expecting to reach a point where she hurt again. It didn't come and she stopped pred a month or two ago. That's why you have to keep trying to reduce. By doing it slowly enough you pretty much remove the withdrawal pain confusion - and you may get there. At this dose (6mg) you are at the borderline of adrenals having to chip in a bit so it has to be slow, you can't just say "I'm stopping". There is no reason not to try at least - but you need to be watchful for symptoms, that's all.
My ESR is usually 4 - has never been above 7 the entire 10 years. Same story with CRP. If I reduce below 3.5mg I start to get cramp in my biceps. That's enough for me to say the underlying problem is still there. My GP is happy, I feel better at 4mg than 3mg and I have no side effects. That is enough for me.
I was diagnosed with PMR GCA in September 2013 Started on 40mg prednisone and gradually reduced because my doctor was paranoid about high dose steroids. He scared me stiff!
I finaly reach 1mg by the following August and the doc said you may as well come off because 1 is not doing anything. So I stopped... By October 2014 I was crippled again, unable to move and in great pain Doc would not hear of me having PMR remission... he would not supply Prednisolone. I had a stash from the months before so I took a massive 40mg again and by the next day was back to normal I reduced by ten a day to the end of the week and then stayed on 6mg until end of November.I had no more Pred by then so went to docs and explained that the improvement was 100% proof that I had PMR and for him to prescribe more. He refused so I went bollistic and said I was going to report him... not only for that but for giving me heart medicine I did not need and which caused massive inflamation and swelling in my legs and feet... he had already admitted that he had been wrong on that. He put me back on the original amount of Pred per month after that. Noew he is just mean and makes me suffer.
I hat the NHS!
I believ I have had PMR a lot longer than 2013. I think it started in 2007 when I went for an eight mile walk with some friends. Perfectly fit and healthy but the following morning I was comatose, could not move, felt 90 years old and had pain all over. This was the start of constant extreme tiredness and the end of playing football in the garden with my little granddaughter forever. I was eventually diagnosed with Graves disease and treated for two years but my bloods did not show anything only a radio imaging test showed Graves. I still believ that I had PMR as well because I got a serious bout of Pneumonia which would not go away, was treated with high dose steriods for a week and felt almost instantly like my old self.... when the steriods stopped I went back to misery again. I had a very bad fall (down 20 stone steps flat on my chest) in the June before I was diagnosed with PMR and I think that triggered some speed up of symptoms. My bloods did not show PMR or GCA concerns but then not everybodies do.I can see inflamation in my body that started back in 2007 there are shapes that were not there before. They are not typical of arthritis which everyone says it is and I do not have the constant degenerative arthritis problems.All my symptoms go away on high dose prednisolone but gradually return as soon as I lower the dose. I am on 16mg at present and am managing albeit with some pain and tiredness and difficulty getting out of chairs. I am primary carer to a severely disabled MS patient and I do a job that although not full time, can be very intensive.
I regret that my doctor put the fear of God into me regarding Pred... It has helped me live a normal life and has stopped my husband having to go away to be cared for by someone else. I am grateful for this medicine and have no longer any fear of it. All tha major side effects subsided in August 2014 when I came off it and have only reappeard mildly. I have lost weight because I stopped taking Omneprazol which was giving me palpitations and far worse side effects than Pred. I am happy to stay on these meds of they are helping me live and cope.
I'm sitting here in tears after reading an email from my daughter about the catalogue of appalling care her own daughter has received from some NHS staff, which on a couple of occasions have led to a 14 year old begging her mother to take her out of the hospital where they were ignoring her needs and she felt she was going to die so an ambulance could be called because she knew they would give her what she needed (nebulisers) to be able to breathe. She too was told she must come off pred as it was too dangerous to take high doses for so long. It is the only thing that keeps her alive. Without it she has no future, she has a very poor prognosis anyway.
Mercifully, alongside that disgusting care she has also had some good management. But your post also shows the bad side of the NHS - I despair. What can we do?
Old age - only you can decide!!! Well, 4 years ago I was a young, lively, 72 year old. Now I'm a quite disabled 'oldie'. Old age in 4 years - not uncommon I suppose.
I shouldn't moan. I'm certainly better than I was and am going to try going down to 5 mgs - keep your fingers crossed for me!
Aren't we amazingly lucky not living in England? Your poor granddaughter (and her faimily)! Was this the system (NHS) that was so famous just a few years ago? Hard to believe!
How very sad reading these posts it chokes me....I do believe people would pay extra tax (I would!) for better care, to improve our NHS. Every day, we are reading about the elderly being treated the same as your grand-daughter...even some Gp`s despair at the "system" we have now....It was announced this week 20, 000, managers are to be made redundant from the NHS, to pay for more nurses!! ye gods....It`s a very worrying situation at times here.......is it any better in Italy? I hope so!
Wow! You really have gone through it with the NHS, haven't you?
Here in Germany they take GCA/PMR very seriously, but the Rheumies still want you off pred asap. Luckily my doctor sees it differently. He says "it's your body, listen to it". I can ask for 10, 5, 2 or 1 mgs of pred, he never complains.
All the best. Constance.
At last! Someone is making sense - nurses instead of pen-pushers!!!!
I know - I sit here looking at what is going on there and being so grateful for what we have at our disposal.
True - but my daughter and her training are unlikely to benefit it. She - and many others - are so disillusioned by the way THEY have been bullied and overworked so they are unable to do a good job that they are voting with their feet. They were talking about getting former staff to return - but it isn't going to work unless the entire culture and atmosphere is cleaned out. At the moment in some hospitals it stinks.
The current promises of more UK-born doctors and nurses in the lifetime of the next parliament are hot air - they have closed training schools and will have to set them up again and even then it takes 3 years to train a nurse or midwife. To get to even what used to be called a junior houseofficer takes 5 years. To get specialists as long again, and that includes GPs. And they will be left with a massive lifetime debt - there is no wonder noone can afford to buy a house!
Linda - yes, here where I live in northern Italy it is far better still although they are implementing cuts and reorganisations which the population object to greatly. It is a very rural and inaccessible region and they all want to have the local hospital doing everything, especially having their own maternity units. There is a move to centralisation so the units are bigger and so have more cases per year - not just financially sensible but also the staff get more experience. I don't care if I'm 70 miles from home for my serious illness if the difference means the doctor sees multiple cases per year rather than just a few - especially for surgery. But once you are past needing their expert care you should be able to go near home to finish recuperation.
PS - forgot to say: other than weekends I never have to wait to see my GP, she runs a "turn up and wait, no appointment" system. If you need to see her, you can see her. And then there is no limit to the length of the appointment. As far as I know she also will see you by appointment outside the 5 x 3-hour surgeries if you work. And she does house calls for the people who are too ill to get to her. There is cover for overnight and weekends and then there is always A&E for which you will be charged 15 euros unless you are admitted. You might wait over 4 hours if you go with something minor during the tourist season - being passed by trolley after trolley of bloodied skiers ...
About the same here, except we need doctor's appointments (better - no unnecessary waiting!) No bloodied skiers either!!!
Have a great, sunny, weekend.
Only trouble is....it`s the present gov that is promising this for their vote....why haven`t they done it before now! Like Eileen has said it takes years to train the staff needed. We are all living longer (hopefully) so why sack 6, 000 community nurses...now the elderly are "bed blocking" because no-one is nursing them on release from hospital .......Where I live, many patients have in the last two years waited in ambulances or corridors because A&E can`t cope....it puts you off thinking about calling the emergency services!!.....We haven`t even had a bad winter either......we all feel sorry for the staff.....why would anyone want to work in our NHS.....Their are some very good hospitals, where patients are treated very well, but they are few and far between....
This country has gone to the dogs if they can treat a young girl in this manner, appaling where has all the care gone, my friend who is a nurse is appaled how her colleges treat people, so sorry to hear about your grandaughter Eileen hope she is getting better.
where are these nurses coming from, half of them in the hospitals cannot speak english,
My daughter in law works for the NHS and when her staff leave they dont get any new ones, half of them are dead on their feet before they go home, i reall feel for the nursing staff, unlucky for us we have the third worst hospital in the country, but saying that they were very good to me last sunday,
Fingers and toes crossed for you Constance!! Good luck with your reduction.
hugs, Diana🌸
I really can't take it in how England has changed in the last 10/15 years. NHS a mess. Old people not able to get operations, or even be looked after properly. And the price of houses!!!! In the year 1997 we bought a very nice detatched house for £88K. We sold this house in 2002 for £210K (just five years later!!!!) - God knows what it is selling for now!
Gosh! How is that caculated? Perhaps one ought to look at the medical care in a particular area rather than the situation/city.
We lived in Germany for most of the 80s before returning to Dundee - we didn't recognise the country we went back to, nor the people.