is this normal

[dillydally1]

hi everyone, hope you all had a lovely Christmas and wishing you all health and happiness for the new year.

was diagnosed with pmr 12 months ago. since then its been swings and roundabouts with my treatment. doctors always seem to want you to reduce prednisolone very quickly. after the first 6 months after starting on 20mg my course was complete.

I then moved home so different doctor and they put me onto 5mg pred,eventually reduced down to 2mg now up to 2.5mg, I have been referred back to rheumy on 20th January.

main reason for post;-

over the Christmas period my dad was admitted to hospital and is still in and my mum still lives at home. i used to live just down the road from them and have always been their for them and helped out as my dads been ill for about 30 years. i also cared for my grandma over her last 8 years of her life cause dad said he couldn't do it.

i was finished on ill health from work in 2009 for another problem, not pmr, i am now 57.

the thing is this time i have found it so difficult, my pain is worse, the fatigue is awful, got to the stage were ive ended up with sinusitis, throat and chest infection.

don't even know if im explaining very well, but i feel so guilty, angry with my body for being so weak. i don't know what to do, i can't let mum and dad down at 84 but i feel if i carry on as i am doing, this is going to happen.

is it normal with pmr to feel like this. just a normal day seems hard to get through but this has really shook me.

sorry for this, got my self in a bit of a state

thanks x

[daveD]

Your treatment seems a bit strange to me, I to have had PMR for 12months & have just managed to get down to 5mgs. I dont under stand the 6months course bit?? Perhaps one of the Girls can give good advice, I still suffer with pmr/ pred brain.Good Luck.

[dillydally1 in reply to daveD]

thanks daved,

any advice would be great x

[suzy1959]

It sounds like your dilemma may be around the lifestyle we all have to adopt with this horrible PMR. You have been a carer for a long time and a lot of people with PMR think that stress brought it on. Now is the time you have to be more selfish and put your needs first. If we do too much ( however much that is) then we pay for it. In her book on PMR, Kate Gilbert says that we can reckon on only managing about half of what we did before PMR. I have certainly had quite a few flares down to doing too much. It won't help in the end.

Having said that, you seem to have got down to a low level of Pred. very quickly- maybe you'll be lucky and get through this fast, but don't be surprised if it takes longer.

Good luck!

[dillydally1 in reply to suzy1959]

thanks suzy,

I read the posts on this site and yes your right I have got down quick with prednisolone but don't know why. my esr has I think at its most been 69 or 79, has been reducing, I think its about 29 now. I still have the aches, fatigue, and to be honest it sometimes feels like mild flu most of the time some days or weeks can feel worse. they dropped pred by .5 to 2mg a few week back, I was called in for blood test and esr had raised again so up to 2.5mg. im so confused, maybe get some new ideas from rheumy, any idea on things to say to rheumy x.

[daveD]

As suzy has stated you need start thinking about your own needs,perhaps get outside help with parents ect. I also think you need a higher dose of pred to reduce the pain, then start a slow reduction.this is purely my own opinion.

[PMRpro Ambassador]

Having read the responses - I think it is quite obvious that 1) the reduction you were put on was far too fast, PMR is a chronic autoimmune disorder which requires treatment over probably at least 2 years 2) you are on too low a dose for the state of the PMR you are at at present and 3) the stress of your parents illness and your feelings are exacerbating your PMR so you probably need a higher dose in order to be able to cope.

This is a link to a paper written for GPs to aid them in managing patients with PMR:

rcpe.ac.uk/sites/default/fi...

The reduction described in it would be a good place for your GP to start - but the most important point is that it is symptoms that must be taken into consideration , not what are apparently "normal" blood tests.

In a sense, yes, it is perfectly normal to feel like this when you have PMR and are faced with an intractable situation that you cannot deal with comfortably. You need practical help and you need, for the moment at least, a higher dose of pred so that you are at least physically able to do some of what you are faced with.

What you HAVE to learn to accept is that there is no reason at all for you to feel guilty - it is not you being weak, you are not a failure: you have a chronic illness for which there is no cure and which you have to manage. Pred - at the right dose - will help with the pain. It won't deal with the fatigue though and there you need rest, but you are not in a position to have that to the extent required.

PMR feeds on stress, it is generally accepted that stress can be one of the triggers for PMR to develp, once you have it, stress just makes it worse. For a long time I could develop a minor flare just from a stressful telephone conversation with the tax office!

This may sound sound harsh - but if you carry on like this you will be more ill, no use to yourself and no use to your parents. You MUST put yourself at the head of the queue - because if you don't then you will be too ill to look after any of you.

Given the state of the UK care system I have no real suggestions to offer - but the first place to go is to your GP and ask them for a higher dose of pred so you at least feel half decent. 2.5mg is a piddly little dose, anything up to 7.5mg is regarded by most sensible doctors as acceptable, it is a "physiological dose", about what the body makes anyway. If you are threatening a flare (as indicated by your ESR rising again) then you need to go further than 0.5mg more. I would suggest you need at least 5mg for the moment - it is still a low dose. That would be a good start.

They may also be able to arrange something to help you out - I don't know what your financial status is, it is none of my business. Have you no other support? Other family, neighbours, church? Local charities? I do realise how difficult this may be - but you must try to find someone or something.

[Lisa630]

Dear Dillydally. .

First of all I doubt you dilly dally at all, dashing around helping others before your self. .

Forget your PMR for a min. . .

Anyone caring for elderly relatives would be feeling like you do. . And sometimes worse. .

Sit down make a cupa, and get a note pad. . Write down all the things that need doing for your parents, and then prioritise things . . Write down the days you go over and a job for each day to do whilst there. . You need to be more strict with yourself and be realistic with what you can achieve, get outside help. . Contact care direct, they can help with home care or day centres for example.

Speak to your GP about help. .

Bringing back the PMR. . . Pred, will make you "a different person" I know your only on a low dose but it messes with your head big time, fatigue is a huge sideeffect among lots of other things, try to keep that in mind, and it will help you accept all the changes in your life. . .

Always remember your doing your best for your parents, just make time for yourself as well. . .rest as much as you can. . . It really does help . .

Take care . . Lisa x

[dillydally1]

can I just say a big thank you to all your replies. they have helped me more than you imagine. x

[paddyfields]

Hi Dilly Dally, are you flagged up as a carer on your GP's system. They are supposed to keep a note on the carers records. The recent Act of parliament strengthens the position of the carer and their needs must be taken account of. Second thing that should but does not always happen is that you are entitled to a "Carers' Assessment" usually by social services or Adult Care - it varies from place to place - as a result of which you will at least get some support in finding the best solution for you and your parents and you never know you might even get some practical help with aids and suchlike. Age UK will be able to give you local information and advice., especially on the drill for hospital discharge with regard to your father. What the hospital are supposed to do and what happens in practice can differ so it pays to be possessed of the correct info.

The fluey feeling you have may be as much to do with the too rapid winding down of the pred. as much as the PMR.

Best wishes

[dillydally1 in reply to paddyfields]

thank you for all the advice, much appreciated x

[daveD]

evenin dillydally. Please let us no how you go with your rheumy.I have learnt since I have been on these Forums not to be overawed by Drs ect & to state my case, so far with good results.Hope life & health start to get on the UP. All the best I think from every one.Dave

[dillydally1 in reply to daveD]

thanks daveD x