Yep - Here we go again !! I'm back again !! After my October set back I went back to work in January and thought it was going OK (not great) but I was able to live a 'normal life'. It was hard because my work is working with 3 and 4 yr olds so it is not only mentaly demanding but physically as well. Dropped from 25 mg to 20 mg then to 18 mg, it didnt like it so went back up to 20 mg waited a bit and tried 19 mg still didnt like it. Back to being off sick, muscles not working and back up to 25 mg waiting on an appointment to see the Rheumatologist at the hospital in June. I don't think I can work and get better from this awful PMR. I'm 3 years away from retiring and am thinking do I stop work now ? but how are we going to manage financially ? Do others claim benifit for PMR ? Anybody out there with some advice would be appreciated. Lx
Hi Lindycarmen,
I can't tell you anything about benefits I'm afraid although I do know that if you have PMR it does come under disability discrimination and you can sometimes get a \"blue badge\" if you have a reasonable council.
I am in awe of anyone who even half manages a \"proper job\" with PMR - I know I couldn't have and am very lucky to be a freelance translator so only have to get from the bed to the computer chair and don't even HAVE to get dressed properly!
However - what I can tell you is that being retired is nothing like as expensive as going out to work! My husband took early retirement from the NHS nearly 2 years ago and his income fell to less than a quarter of his salary - he had not been in the NHS all his life, we had had 10 years out altogether and the years transferred from the Uni were devalued (i.e. not 1 to 1 transfer value). He now does some consultancy (not a lot) and I still work but it is very part time really. And I admit we have a couple of small properties in the UK with rental income. Nevertheless we have saved more in the last year and a half than we were able to before retirement!
Your shopping bill tumbles (believe me), you don't need as many clothes to look presentable all the time and the fuel bill for the car is also a lot less (or however you travel to work). It is truly amazing how much less we seem to need now. And as you don't have to go on holiday in the most expensive times anymore that makes a massive difference to price - but you are also not so exhausted and stressed so the need for those holidays is also reduced. You have the energy to do other things for entertainment that are free so you don't stagnate either and part of the food bill being less is that you have the time to do it the old-fashioned but cheaper way - home cooking!
However - retirement on health grounds is a very different thing from just taking early retirement as we did. My husband lost 5% of his pension for every year he went early (i.e. before 60 in the NHS) - had he been ill that wouldn't have happened. Get your union rep and bend his ear - find out what your entitlements are.
And is the PMR diagnosis correct? If 25mg isn't cutting the mustard they should be thinking sideways - at that level you should be feeling much better than it sounds you are. Lots of us have also found that trying these sizeable drops just hasn't worked in PMR - a few people have had similar experiences to you, dropping 5mg at a time around the 20mg/day mark and it all coming back and then being more difficult to reduce afterwards. One lady went back up to a dose where she could get reasonably pain-free and is now dropping by not more than 1mg at a time and it has worked so far.
Most doctors experience with reducing steroid doses is in other diseases. PMR seems to be very different from most of them: for one thing you are not taking the pred to \"cure\" a one-off lot of inflammation and then having to get off the steroids which after only a few weeks you can do at a rate of 2.5mg or 5mg at a time - the underlying disease process has been dealt with. In PMR, it is a chronic process and the pred is to control the symptom of inflammation the real disease is giving rise to - then you look for the lowest dose possible at which the inflammation doesn't resurface. If the PMR hasn't gone into remission you still need some pred for some considerable time, there is no getting away from that. But doctors who are inexperienced in PMR try to apply the rules from the other games and end up with their patients yo-yoing their pred dose - and once that happens it seems to be more difficult to reduce the dose.
I have been reducing at the rate of half a mg at a time which, since I take my pred as a double dose on every second day, is equivalent to a quarter of a mg per day! Anything more I had tried previously just didn't work, the pain was back within days - and whether it was steroid withdrawal pain
Hi Lindycarmen,
Like Eileen, I am in awe of anyone that can continue to work with PMR, especially in such a demanding job .
I had to give up my work as a nurse two years before I developed PMR as I was diagnosed with osteoporosis in my spine and the heavy lifting was deemed too hazardous for me.
I do get disability benefit,for which I am assessed every year, but it is not a massive ammount of money, less than 200 euro a week, which is a lot less than I could earn if able to work full time :roll:.
Since my PMR diagnosis, the welfare doctor doesn't even physically examine me anymore as he says there is no way I could work with it.
Luckily, my husband has a good job,but we no longer have the \"safety net\" of me being the main income provider if anything were to happen to him.
It is certainly worth exploring all your options, as the lifting of children ,even small ones, must be causing you a fair bit of pain :cry:.
Here's hoping you get some relief soon,
Best wishes, Pauline
Thank you Eileen and Pauline for your replies - much to think about. My health will always come first, I have two beautiful granddaughters and another grandchild on the way and they are more important to me than any job.
Just been to see my GP and he has put me off work until at lease after my hospital appointment so at least for the next 7 weeks I can potter around home at my own pace without having to explain to work when I will be back - the way I feel now - not at all.
One day at a time and PMR is not going to get the better of me !!
To all PMR sufferers - you Take care Lx
Hi Lindy Carmen
Just read your post and I am pleased to hear your Dr has signed you off As Eileen says is this PMR ?? and you obviously need to see a Specialist as normal doses of steroids arent doing it for you
You now have time to rest and not be under pressure which is very important with PMR I wouldnt think long term with your job and it is also going to have to go to the bottom of your list of priorities at present as your health is the most important thing What you need to do is to find out what would happen if you cant go back How long they pay you for sickness Some people are able to have their sick leave assessed as seperate periods if they go back to work in between but with others it is an annual accumilation Check out your pension People I have known who have retired on health grounds dont have their pensions reduced because of it
Obviously dont know your financial circumstances but there are benefits available but a friend who had to retire because of health problems at about 63 was given pension credit rather than any other benefits until he reached pensionable age and his mortgage was covered also
I enjoyed my work but someone once said to me I dont know anyone retiring said I didnt spend enough time at work !! but an awful lot of people say didnt spend enough time with family , travelling, hobbies etc
I hope you feel better soon
Best wishes
Mrs G
Hello Lindycarmen
I'm so sorry to hear that the pain has worsened again since you previously posted.
Like the others, I am in awe of anyone who manages to work whilst suffering from PMR and, as your symptoms eased during your last bout of sick leave, it does seem that returning to your stressful job has aggravated the inflammation. PMR doesn't sit easily with stress, either emotional or physical and it sounds like you had a fair share of both.
Hopefully, now that you have been signed off again you will get some improvement in your pain levels.
I was unlucky enough to remain undiagnosed for a year with such severe symptoms that I was bedbound for several months of that year, attending my rheumatology appointments by ambulance and wheelchair. Social Services called and fitted a raised toilet seat and offered my husband certain financial benefits so, in answer to your question, yes they are available for PMR sufferers, but as I was out of earshot and in any case he declined, I am not sure what they were. However, at a later date, when I could eventually get in the car, I did apply and was successful in obtaining a Blue Badge. We also hired a wheelchair from the Red Cross.
25mgs is higher than what is considered to be the usual starting dose for getting the inflammation of PMR under control. It seems that you were successful on 20mgs so I wonder if you tried to reduce from that too soon maybe? Hopefully, the rheumatologist will carry out further tests to ensure that the right diagnosis has been made but meanwhile now that you are off work give yourself lots of TLC and then with a bit of luck those pains will ease. Very best wishes.
MrsO
Lindycarmen
Email me via this site if you want to.
I have an attendance allowance and also a Blue Disabled Badge and also access to someone who might be able to help you in another support group.
Also, did you say you were a teacher?. If so contact your union rep and let us know what they say.