PMR

Sorry to hear you mum is in such pain.

First of all, might I suggest you take the time to read back posts on this forum that seem relevant. This will provide you with a lot of answers to questions you may not even have thought about.

This is probably a question you might not expect: is it PMR? Can you tell us a bit more about the beginning of the illness and how she responded to steroids then, please? What doctor is in charge of her treatment (GP, rheumatologist)?

I have posted before about the use of methotrexate, I personally am not convinced by the evidence available in the literature but I'm also not a rheumatologist! If she is in a lot of pain, the steroid dose is not high enough to deal with the inflammation - and the majority of the pain should resolve with a dose of 15mg a day (about 70% of symptoms should improve within a few days of starting steroids). Otherwise it must be queried whether this is the correct diagnosis.

Go to the pmr-gcaUK northeast support site for information about PMR, dosages and diagnosis guidelines - the guidelines are written by doctors for doctors but the other stuff is written by patients for patients in ordinary language. MrsK will be about later I expect and give you other info. That site will answer loads of stuff for you, there is a DVD about dealing with PMR and so on.

I'm sorry to have to tell you this - but PMR does NOT necessarily burn out in 2 years. Many of us here have had it for years, or have had it once and got off steroids only for it to come back. Some people do recover or go into remission for a long time. No way of telling which will apply though. Also steroids are not a cure, they control the symptoms enough to make life liveable. That's why I asked about the early stages for your mother and why I also suggest she may well need a higher dose now. Many doctors (and patients) are desperate to get the steroid dose down and their patients end up like they were at diagnosis on a low dose of steroids. That's pointless - you have a choice: steroids at the right dose and have a reasonable life or be an invalid and in constant pain without steroids. My attitude is that by taking steroids I live well. If I don't or the dose is too low I don't. Steroids have side-effects - I'm lucky, I have very few - but I only MIGHT get osteoporosis and I'm a bit overweight. Both are small penalties to pay for my quality of life.

keep in touch, with more info we can make some other suggestions to make life a bit better for your mum,

EileenH

Thank you so much for your reply. My mums pains started just before Christmas 2009 when she could barely move. The worst pain is in her shoulders. The doctor diagnosed PMR following a blood test which showed a raised ESR. She showed some improvement when commenced on the Steroids but not a dramatic difference. The lowest she managed to get to prior to starting on Methatrexate was 14mg. This was then slowly reduced further once she was commenced on the Methatrexate but she remains in such alot of pain. Due to the side effects of the drug, she is now considering stopping it. Maybe the answer is to up the steroids again? She is under a Rheumatologist as well as her GP so we will discuss this at her next visit.She is also suffering from the effects of the long term use of the steoids which is depressing her.

I shall keep in touch and keep searching the internet for any new ideas! Thank you once again for your advice.

A friend Mrs O rang me about your posting and I have telephoned another sufferer of PMR who has been on Methotextrate and has come off the steroids completely. She is now going to write her story and how she coped and put it on our website.

In the meantime, what dose of metho is your Mother taking, Meg started on a lowdose of 5 and then it steadily increased as the steroids decreased until she is now on 15 and it can be upped if necessary to 20 or 25, but 25 is the maximum dose. Metho is really a steroid sparing agent and the aim is to reduce the steroid and control the pain with the Metho and perhaps other medication.Your Rheumatologist should be able to guide you.

However, did anybody test your Mothers Vit D level before she was diagnosed with PMR (its one of the tests contained in the BSR Guidelines Issued June 2009).

If this test was not done, ask for it to be done, if it is deficient (and that is more than likely) then ask for 4-5000 units per day. Both your GP and Rheumatologist could be slightly non plussed - as the reccommended units in the UK are up to 2000units. However the FDA in the USA have stated that the higher dosage is necessary. The USA adds Vit D to quite a number of staple foods, just like we did during and after the WW11. We stopped it for some reason and rickets is on the rise.

There as a Programme on Radio 4 last Sunday about Vit D, the Food Programme, worth going on to the BBC site and listening to the broaddcast.

Muscle pain and weakness in older people can be caused by lack of Vit D.

That is why the Vit D test is there before you are diagnosed with PMR.

The guidelines are available on www.pmr-gca-northeast.org.uk under Useful Information.

Good Luck in your search and if you come across anything helpful, please let us know.

Thank you so much for your reply. I think my first task is to get my mum a computer! Your forum has been so helpful, I am sure my mum would gain a great deal knowing there are others suffering the same as she is. She obviously knows she is not the only one with PMR and she will always tell me there are so many people worse off than her but I think talking to people who understand what you are going through offers so much comfort and support.

I am not sure what dose of Methatrexate she is on at present, it was doubled at her last rheumatology appointment, however, there has been no change in her symptoms.

I will also find out if her Vit D levels were checked and listen to the Radio broadcast.

Once again, many thanks to you for your advice and if I find anything useful in my searches I will post immediately.

Kind regards, Julieann