Advice for my mum please...

[Judyturton]

Hi, my mum is 79 and not on the internet and I am trying to find out some information for her if possible...

1. She is on her third flare up of PMR - has anyone taken Methotrexate - did it work and was it worth the risk?

2. She is currently on 9mg of Pred - has anyone taken this dose for a extended period of time?

3.Has anyone taken any prescribed drugs to treat the pain with success?

4. Her current rheumatologist has actually said that this flare up isn't PMR but osteo arthritis as her ESR reading was low - has this happened to anyone?

5.She has extreme bodily fatigue - any suggestions on how to treat/handle this?

Any help or advice will be greatly appreciated by us both.

Thank you,

Judy

[Annodomini]

it would be useful to know how long she has been on prednisolone - how long has it taken her to get down to 9mg? The rheumy could be wrong about the cause of the present flare because inflammatory markers aren't necessarily an accurate diagnostic tool for PMR. A more accurate tool is one's reaction to the first few doses of pred. After six years, i am down to 1mg and reducing to zero, hopefully in a few weeks. Ups and downs are all part of this condition.

[Judyturton in reply to Annodomini]

Thanks for your response - for this flare up she was put on 15mg back last year, got down to 7mg and then went back up to 15mg as the pain came back too harshly, she is now down to 9mg. These comments will be so helpful to her so thank you.

[piglette]

A lot of people take Methotrexate to help them reduce the steroids. Some people think it helps some don't.

People take various doses for varying time periods.

The only drug that treats PMR pain succesfully is steroids.

Her rheumatologist may be correct or may be not re it being PMR. Around twenty per cent of people never have a raised ESR. Has your mother had her CRP checked it is supposed to be a better check than ESR?

Your mother has an illness and one of the symptoms is extreme fatigue. I find the best thing is to give into it. PMR is life changing, you cannot just carry on like you did before you got it. She needs to learn to rest, rest, rest. Overdoing things can cause flares.

[Judyturton in reply to piglette]

Thanks for your advice, it is so good to hear of other people's experiences.

[Polywotsit PMRGCAuk team member in reply to piglette]

As far as methotrexate is concerned, it would be fair to say that it works for some people but not for others.

[Judyturton in reply to piglette]

Thank you, piglette, very interesting re the ESR and I will ask her about her CRP.

It's hard to rest when you've been busy and active isn't it?

[piglette in reply to Judyturton]

The thing is with PMR if you don't rest PMR will turn round and bite you, so in the end you have to give in to it. I have had to give up a lot if my previous activities as I was just not able to do them all anymore, however I have tried to do other things which do not need me to be so active. I go swimming and also have become a lady who lunches or at least has coffee. I probably talk to my friends more than I did. I read more and look at Ebay more!

[Judyturton]

Does anyone use any topical cream to help relieve the pain?

[PMRandRA in reply to Judyturton]

I use Voltarol occasionally but NSAIDS even cream ones are not good for the elderly - 68 - so I tru not to.

[Judyturton in reply to PMRandRA]

Thank you.

[PMRandRA]

Osteoarthritis doesn't flare like PMR and Rheumatoid arthritis do. I have all three and Osteo is always present and gets worse with exercise. Intake 30mg Codeine - which becomes Morphine in the liver - combined with 1000mg Paracetamol, up to 4 times a day. I try to take as little as possible. This dose is for Osteo pain.

I am on Prednisolone for the PMR and RA and started on 30 mg and am now down to 8/9 daily but the pains have started again!

Hope this info helps.

[Judyturton in reply to PMRandRA]

Thanks, yes it does help. She doesn't know anyone else with PMR so will really benefit from reading these replies.

[PMRpro Ambassador]

1) Can't really help as have never taken it, have never been offered it and probably would refuse politely anyway. If I were considering my 79 year old mum - I think I'd decline politely too. Unless there is a very compelling reason for her to come off a dose that is barely above the physiological dose (equivalent to the amount of corticosteroid your body makes naturally anyway). And her dose has been reduced in a fairly cavalier manner I would suggest. It took me from January to nearly Christmas to get from 15 to 8mg after a flare. And I'm a lot younger than your mum.

2) I have been on pred for nearly 8 years, I'd say I have been on above 9mg for 6 of them. I did have a short essay about 2-3 years ago when I managed to get below 5mg (which was fine) but 3.5mg was definitely not (horrendous fatigue) so I went back to 5mg. A few months later I had a flare and was back at 15mg. By last September I had got back to 8mg (all the specialist asked) and am now at 6mg again after a couple of hiccups as I also have myofascial pain syndrome and that got in the way.

3) NSAIDs are not recommended alongside pred - and most of us have never found it helps with PMR anyway.

4) True experts in PMR know that the ESR does't always rise when the patient is still on pred and sometimes even after being on pred and having stopped. It is even possible to have untreated PMR with totally "normal" blood markers. They are only a guide. OA doesn't really mimic PMR - although I was told my PMR symptoms were OA. If so - pred cures OA as there is no sign of any of them now.

5) Fatigue is an inherent part of autoimmune disease and has to be managed by pacing:

healthunlocked.com/pmrgcauk...

But the question is more - is the fatigue worse than it was? Was it less at higher pred doses? There are other factors at work at her age.

And should add - all those years of pred have made next to no differenceon any of the long term things - bone density the same, no cataracts, BP is high for another reason and well managed. etc etc.

[Ronswife in reply to PMRpro]

I hope. She is eating well. I think you may need. Different RA who recognizes this s PMR

My first time with PMR I was misdiagnosis as RA and put on methotrexate

I would not recommend it at all

It did not remove the pain and had many other propblems

[PMRpro Ambassador in reply to Ronswife]

Methotrexate is often used by rheumies in PMR in the hope of reducing the dose of pred required - claiming it helps taper and reduces side effects. A study showed while it might lower the dose in some people it didn't change the rate of side effects. If it doesn't cause side effects for the patient it might be worth trying - but not when it makes them unwell.

[Judyturton in reply to Ronswife]

Yes, I think this is what she has read.

[Judyturton in reply to PMRpro]

Thanks for all the info, I will pass it on.