I am new to this as well and 48 in April working full time for the local government who are very sympathetic about sick leave. Once diagnosed with Pmr is it classed as a disability?

I use to be an active person before I now feel lazy and feeling everyone else thinks it. I have a brilliant Dr as she also has the condition so can sympathise. I long to take the dog out for hours on end and be able to go up and down stairs normally and not as a person twice my age. On 15mg till Saturday then to try and reduce. My weight gain is so depressing. Also struggling looking after my mother who I take shopping weekly and do her cleaning

9 Replies

  • Hi jaxpox. Welcome and sorry to hear about your problems. Don't think that PMR is classed as disability, I never managed to get anywhere going down that road, but I'm sure others who have had it longer or who know the benefits system better than me may be able to help you.

    It's difficult enough looking after yourself when PMR strikes, but when you are trying to look after someone else it becomes a nightmare. Do you have any other family members who could help? Maybe as you work in local government you should also try and talk to other departments that have responsibilities for health services. As you know, they are there to help - make the most of their knowledge as a colleague. It may be a bit embarrassing if you know them, but if you need help then you need help!

    As for your weight, it will go down again once you get down to lower doses, but DONT try and do that too quickly. And you need to rest when you can and learn to pace yourself so you don't get too shattered in the first place - very difficult when you're used to being active. But it's the only way to get through. Good luck and let us know how you are getting on. DorsetLady

  • Thanks for your support. I'm not concerned about the benefits just the disability act and how I stand at work when having a bad day. There is no one else mum will except in her house I've tried that. Is there a timeline to this condition and will it develop onto gca.

  • Sorry I have so many questions!

  • First of all - here some links to sites and other forums where you will find information. The last 2 links are to papers by doctors about managing PMR and GCA so they may be a bit complicated - your GP may not have come across them before though.

    The website for PMR-GCA NE can be found at pmr-gca-northeast.org.uk

    The forums within the NE site are here - pmrandgca.forumup.co.uk

    Other useful sites:

    PMR-GCA Scotland pmrandgca.org.uk

    There is also a new National Organisation PMR GCAuk which covers England, Wales & Northern Ireland - now has a website pmrgcauk.com.

    rcpe.ac.uk/sites/default/fi... (this is a paper by the Bristol group which is aimed at GPs to help them diagnose and treat PMR and GCA more confidently and using a scheme that results in fewer flares due to reducing the pred dose too fast or too far, which is the primary cause of flares).

    pmrandgca.org.uk/research-a... This is a page with links to full articles on Research and Clinical Guidelines including A clinical review of Polymyalgia Rheumatica by BMJ.

    I don't think PMR is classed as a disability because the usual answer is that it is well controlled by low doses of pred - not that that means you feel back to normal of course! Part of the problem is that it is perceived to be an older person's illness - and most patients are women over 60 who are retired anyway. GCA is covered by disability legislation though. Occy Health and your union are the best people to discuss it with.

    Have you had a good response to the 15mg dose? It sounds as if it isn't that good - I could suddenly do stairs normally within less than 24 hours! Mind you, I wouldn't have done more than house stairs as I worked from home. The other things is that while the pred does a lot you have to do your bit and it definitely sounds as if you are not! REST is imperative and pacing yourself. Your muscles are still intolerant of acute exercise and the underlying autoimmune disorder that causes the symptoms we call PMR is still active and that is what causes the fatigue and some of the other effects like brain fog (which pred compounds).

    Quite a few ladies on the 3 forums (including me) have had a lot of success controlling their weight and even losing weight while on pred by cutting carbohydrate drastically. I am still on a low dose of pred but have lost 38lbs in weight that had gone on with pred, the weight loss started while I was still at 15mg. Pred changes the way we process carbs so cutting them helps - low carb also helps to keep cholesterol levels down (I won't explain it here, I'd be here all day).

    And when you start on that reduction -SLOWLY! Will your GP let you do 1mg drops? It depends on her own experiences of course - but many patients struggle to reduce 2.5mg at a time and keeping drops to 1mg helps a lot with withdrawal pain even after just a few weeks. I can't even manage 1mg at a time and spread it over a few weeks, gradually increasing the number of days at the new lower dose and it was only when I tried it that way that I managed to get below 9mg., I'm now down to 4mg.

    A GP with PMR eh! Things are looking up - first working GP I've heard of with it. I've come across a couple of retired ones - and their attitudes about reducing have changed dramatically now they have PMR themselves!

  • Hi jaxpox,

    I'm very new to all of this too & was only diagnosed this week. From what I understand it is not a foregone conclusion that you will get gca but make yourself aware of the symptoms just in case. I've been told that this condition will last 2 to 3 years before going into remission but again this seems to vary from person to person & some have suffered much longer than that. I have ordered the book that has been recommended on here to gain a little more insight into this condition & there are many websites offering information but generally we seem to be at the mercy of pred & reducing very very slowly throughout this journey.

    Good luck & best wishes & may we all find what works well for us

  • Hi again,

    As PMRPro says, the only say to reduce is slowly, slowly. Once I got down to 15mg I went down by 1mg each drop, then once down to single figures dropped by 0.5 at a time. Sounds minuscule, but it seems to fool your body. Also, as PMRPRo says try to do it over a period of days or even weeks rather than one day to the next. It worked for her and it works for me. I'm now down to 5.5mg with no glitches!

    Also get Kate Gilbert's book, it's good for you to read, and also those around you! It's very difficult to explain to people that haven't got PMR/GCA how debilitating it can be at times. It might help to explain the symptoms to your bosses, they do need to be aware of your situation, and as advised before do touch base with the unions that's what they are there for.

    You won't necessarily get GCA just because you have PMR so long as the Pred is at the correct dose to control the inflammation, but it is wise to know the symptoms so you are aware. But don't get paranoid about every little niggle! DL

  • You are all so knowledgeable and for that I am grateful. I have been on pred for two weeks and she wants me to go to 10 tomorrow I have had less flare ups but needless to say still having them. I will order the book which you all recommend. And keep reading the forum's.

  • NO!!!!!!! That is far too big a step, and far too soon, especially if you still have symptoms. Take this paper to your GP and ask her to read it and listen to the expert:

    rcpe.ac.uk/sites/defaul... (this is a paper by the Bristol group which is aimed at GPs to help them diagnose and treat PMR and GCA more confidently and using a scheme that results in fewer flares due to reducing the pred dose too fast or too far, which is the primary cause of flares).

    Many of us think this reduction is still a bit on the fast side but it is far far better than what your GP wants to do. Your GP is going about pred totally the wrong way for PMR. You need to be on 15mg for at least 6 weeks or until the symptoms have reduced and stabilised. Then you need at least 6 weeks on 12.5mg. Your GP cannot use the usual pred reduction she is used to using in rheumatoid arthritis flares - pred is the only drug that works to control PMR and it is an ongoing condition, an underlying autoimmune disorder is causing your body to attack itself and cause the damage that makes the inflammation cause pain and stiffness. As long as that is active you will need some pred. In RA you use the pred to quickly control the excess inflammation until the normal RA medication is enough to manage it. Pred is the long term manager in PMR.

    Good luck with your GP - I do hope she will listen because if she doesn't you will be back to how you were at the start and from experience the next time it can be harder to get the pain under control.

    I should have said before, about 1 in 6 people with PMR go on to develop GCA but that is probably because the PMR was the first sign of GCA rather than that the PMR "turned into" GCA. It does happen but by no means to everyone. But at the moment - you need to get this under control - because it isn't yet.

  • Hi,

    You're getting some excellent advice here, which, having only recently been diagnosed at the beginning of January, I can thoroughly endorse.

    It was especially helpful to get and read Kate Gilbert's book. Loads of information there about all kinds of aspects.

    Seems to me, a 75 year old man, that everyone seems to react differently to the onslaught of PMR. Male or female, what other conditions we may have, different weight, different metabolism etc, etc. The one common factor throughout is the slow reduction of the preds, as this seems to apply to everyone.

    I'm having to be patient in reducing, which is not easy bearing in mind that the side effects of the PMR and preds are that I feel more sleepy tired than ever, and certainly get the brain fog that is referred to. Also, I have to endorse the need for rest. I overdid it on Thursday; it was a non stop day, when I didn't rest at all, and I paid for it yesterday!

    Good luck. If you follow all the advice you are getting, you will hopefully be able to cope.

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