I wanted you all to see this message.

Thank you mrs k

A whole range of emotions coming through here including the love/hate relationship with Prednisolone which I'm sure we can all so relate to.

However, we must all hang on to the belief that we WILL recover and thank Heavens that there is something that relieves our pain meanwhile.

MrsO

So so true

I agree completely with this lady I to have just turned 60 had PMR for 2.5 years down to 3.5 then in august back up to 8mh now back to 6mg definately a love hate relationship with pred hate taking it but love the fact that I can continue to work, look after my mum and grandchildren without pred I would be an invalid and life is to short although a terrible illness I would rather have this than what some people have to put up with and there is always the hope that one day it will go away,.

Happy new year to you all keep well

Linda

Thanks for that Mrs K.

Having had PMR for almost exactly 2 years now and, looking back, I can see that 2010 has been a much better year healthwise than 2009 - and that's mostly been getting my head round how quickly to try and reduce steroids, how much discomfort to put up with, and how much I want to get on with life!

What really high lighted it for me was remembering how in 2009 I felt I could never look forward to anything - holidays, days out etc. I was always dreading not having the energy, being too stiff, too painful. Now I just think I'll not reduce the pred. that week - or even up it.

I know it's hard and one needs patience in buckets, particularly those of us who've always had pretty good health and not had to rely on pills in the past.

Anyway all the best for 2011, and may you all get your dosages just right!

Green Granny

How comforting to know that others feel the same way as I do about PMR and Prednisolone. After a very tough 6 years caring for my sick Mum and then becoming surrogate Mum to a very troubled stepdaughter I was looking forward to some exciting 'me' time. Travel, sport, life in general when 'WHAM' PMR appeared almost overnight. Everyone knows what the next few weeks/months were like but with the help of this forum I was able to accept Prednisolone as the one (and only) thing that could help me carry on with my life. I made the decision very early on that I would aim to try to get down to 5mgs, general opinion being that this is a 'safe' dose. Anything below that's a bonus, but I'm not going to beat myself up if I can't get off of it. I want a life and Prednisolone has given me mine back (don't get me wrong, I hated the early side effects and I know a lot of you are still suffering from them, this is just my experience). Last year was pants, this year has been much, much better. I've travelled extensively, been able to take up walking again, enjoyed entertaining and spending time with my family. I still get tired and when I do, I pack up shop, sit down, put my feet up and announce that I'm resting because 'I'm worth it' (works everytime! I'm left alone to recover). I don't try to do more than I think I'm capable of and at times like Christmas and holidays I stop my reduction programme. I'm trying to make Prednisolone suit my lifestyle rather than dictate it. It works (mostly!). My very best friend of 55 years (we met at primary school) is coming to lunch tomorrow, she has Multiple Myloma and will not see next Christmas. I'm eternally grateful that I can have a life with PMR and Prednisolone and I sincerely hope that everyone will get to feel how I do soon. Wishing all my lovely friends a Healthy and Happy 2011.

Lizzie Ellen

PS: On the (very slow) way to 4mgs.

\"mrs k\"

Thank you for sharing this great post this lady is so right about the meds we take for PMR I know it took me a little while to adjust and see the situation more clearly and know the meds is not the enemy :devil:

Thanks from me too Mrs K....One of my Christmas presents from my lovely hubby was a two night trip to London to see a couple of shows

My first thought when I opened the envelope was \"can I get around London and stay awake late enough for the shows\" :cry:

Anyway....I am just back....the PMR behaved and I had a lovely time. We saw \"Oliver\" and the stage show of \"Yes Prime Minister\"...very funny :lol:

I managed to walk around a lot without any pain, and we just stopped in a local hostelry if I got tired, so I am delighted that I was able to do it and feel that I have come a long way since diagnosis in April.

OK.... I am still on 12mgs of steroids a day...BUT...I am able to function, and that is the most important thing :wink:

My dear friend with the ovarian cancer and I plan to take on the golf course in the New Year when the weather gets warmer,and that is our plan for 2011.....small but steady steps.

Here's hoping that we all move forwards next year, at whatever rate it takes to be comfortable and pain free :bubbly:

Love to all, pauline.

Have not posted anything for ages but keep coming back to the site from time to time. Just wanted to say this thread really hit a chord with me. I found the first posting genuinely uplifting I have been on 3mg for the best part of 5 months but every time I try to reduce to 2.5mg I seem to hit a bad patch. Also, I have discovered that if I am having a bad day I shouldn't feel too guilty about upping the pred by a couple of mgs. Hence why this thread gave me a bit more confidence in controlling my own destiny! Happy New Year to all

Greens

I think Zali has expressed very well what we have to learn with PMR - I've just posted on a thread on the arthritisinsight forum where she posted this too. The bottom line has to be acceptance - not giving in but accepting that we may never be entirely free of steroids. There was a distinct \"thread\" with several people saying they could get to about 3mg but then it would go pear-shaped.

About 25% of us will be on a very low dose (1-3mg) for many years - research has identified that. \"Giving in\" I see as saying I will get off steroids and deal with the pain and incapacity by reducing what I do. As long as I am below 9mg/day I have resolved not to struggle to go lower - if I hurt at less, I need that dose. No-one has told me yet what causes PMR - so it could be an adrenal problem needing corticosteroid replacement therapy, just as diabetes needs insulin.

I just walked back through the village as the church emptied after a funeral. Here, most funerals are for 80 or 90 year-olds. Not today: she would have been 32 in February, almost exactly a year older than my daughter. It was a gynae cancer - I imagine probably cervical at that age, another Jade Goody. And there are people saying we shouldn't give the vaccine to girls as it might make them promiscuous. This young woman almost certainly wasn't - but even so, the vaccine would have saved her. Like the rest of you - I'm glad I have PMR and not something less responsive to drugs, even if they are steroids.

Hugs to all,

EileenH

Yes Zali is so right the most important thing is being able to live as near to as possible the way we wish

I was very upset at the beginning of the year when I zoomed back up to 15mg and have slowly got down to 3.5 and have no idea if I will get off steroids eventually or not but Im lucky that the only side effects (so far ) is my extra weight and hope with getting more exercise again some of that will disappear

I have had 3 friends with cancer of the osophogues , one with breast cancer , 2 friends sisters have died with this in the last few years and now a friends daughter who is only 30 has multiple sclerrosis So if PMR is the worst I get Im grateful

Best wishes Mrs G