Manchesterlady

Hi , I'm new here , I have been reading lots of your posts and have to say what a helpful site this is , with so many wonderful people on it .

My doctor thinks that I have PMR (still doing blood tests)I have all the symptoms . I am sick with worry about taking the prednisone . He also mentioned that he might give me an injection ?

Any help would be appreciated . I feel I'm in a long dark tunnel .

8 Replies

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  • Manchester lady I know how you feel as I am a fairly new person to this site. I just felt that I would give you a quick reply to say that I am sure lots of people will reply later in the day who are far more experienced than I to give advice. Pmrpro in particular appears to welcome newbies as she did me and put my mind at rest about somethings but also gave me timely advice about other problems. The people on here are wonderful and will support you to the hilt. I don't know what I would have done without them. I can say that as soon as you are put on prednisolone you will experience far less pain and stiffness which will make you more able to cope with this journey. I hope this post cheers you a little.

  • Hi,

    Sorry to hear you may have PMR. Can understand you are dubious about taking Pred, but unfortunately it's the only drug that can control the inflammation caused - and that's what creates the pain you're in. With PMR you won't be on very high doses, but enough to give you your life back.

    There can be some nasty side effects with Pred, but that doesn't necessarily mean you will get them all, you may get one or two - some people don't get anything significant - but of course you don't hear much about them because they have no questions to ask, no problems to solve!

    If you've found your way around this site you will have read lots of things, but sure PMRpro, or someone else, will be along with more useful links.

    Don't worry about taking Pred, it's not the nicest drug, but most drugs have side effects - you just have to remember it's doing it's job - and that's the most important thing.

    Good luck.

  • Assuming calling yourself Manchesterlady means you are in NW England, you have your own local website:

    pmrgcasupport.co.uk/

    Injections are now being suggested for management of PMR - but they are ongoing, not just a single one. Your GP will fond the justification here in Recommendation 6:

    rheumatology.org/Portals/0/...

    Most of us are on tablets - and while pred has 82+ listed side effects, no-one gets them all and some people get next to none. Everyone is scared of pred - but it isn't half as black as it is painted and you can only find out the pros and cons by trying it. There is no alternative that works reliably - and nothing works on its own other than pred, the other drugs are used alongside pred in the hope the dose required will be lower.

    Using pred isn't generally a lifetime sentence - for 75% of patients PMR burns out and goes into remission in 2 to 6 years. You don't stay on the starting dose for ever either - you reduce (preferably slowly) to find the lowest dose that still manages the symptoms as well as the starting dose did - not everyone is totally pain-free so that is your yardstick. You may get to as low as 5mg, a very low dose.

    I had 5 years without pred - it wasn't recognised as PMR, just "it must be your age" as I had no raised blood markers like 20% of PMR and GCA patients. I've had my share of pred side-effects - nothing would persuade me to try going without it if the PMR is still active, and it was last time I looked!

    As specific questions if you have any - someone will do their best to answer from our collective experiences.

  • Steroids are a wonder drug, unfortunately like most drugs there are side effects, on the other hand it allows you to be human again. It is probably a good idea to look after your diet while on them as they can cause weight gain. I suppose we should all be looking after our diet anyway, I have become quite a guru on gut flora, vitamins, minerals etc etc. I am boring my friends to death, but I notice some of them are now taking beetroot juice!

    You should ensure you take vit D and calcium which your doctor should prescribe. Also you should be offered a Dexascan to check on your bone density.

  • Hi,

    I've had PMR for nearly 2 years, and the main side effect I've experienced is tiredness, or fatigue. Assuming you do go onto pred, which was fantastic at relieving the crippling pain, you will need to ensure you take plenty of rest. If you don't you will find the fatigue will come back to bite! I suspect most sufferers of this condition would give the same advice.

    If you have not already done so, I strongly recommend you get a copy of Kate Gilbert's book: Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. It is quite cheap, and is available via Amazon.

    Good luck.

  • I had the injection before I was put on prednisolone and that did help a bit. 20mg of pred was the magic bullet. Felt 20 years younger and could walk faster than my daughter aged 21 and had no more aches and pains and tendonitis. You have joined the club no one wants to be a member of but things could be worse and this forum is fabulous. Best of luck.

  • Follow this link pmr-gca-northeast.org.uk On the home page a Map of the UK, click on the area for the North West - this will take you direct to the home page and also you can contact Ann Chambers who runs the group. It is well worth you making contact.

    Yes you are in a long dark tunnel - but You are Not Alone and there is a light at the end of the tunnel, we are just not sure how far away that light is - but it is there.

    Do not be afriad of prednisolone, yes it is a powerful drug, the beauty of it is that it has been around since approx 1949-50 so all its side effects are well documented and all can be dealt with if they come along. Nobody that we know has ever had them all. Their are loads of tips and tricks from patients to help you along, if the diagnosis of PMR is confirmed. Life changing? Yes. Life threatening? No.

    If your diagnosis is correct there is a booklet, written by patients for patients and medically checked out with no jargon in it the title is 'Living with PMR and GCA' available. You can read and download the BSR Guidelines to the Diagnosis and Treatment of PMR, they are to be found on the North East website, the British Society of Rheumatologists and the NHS website. Knowledge is power so read up all you can on PMR.

    Good travelling is wished if you have embarked on a journey no-one ever willingly undertakes.

  • Thank you all for your replies , much appreciated. Have a feeling I'm going to become a regular on here . Have had to spend the day in bed today , don't know if that's a good idea or not . Was in so much pain yesterday .