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Polymyalgia Part 2

(8 Posts)
NanKate Fri 30-Jun-17 20:33:38

I got some useful help from GN last year when I was first diagnosed with PMR and have gone down the route of steroids, which I hate but they are a necessity for me. I am down to between 3-4 mg a day but it is such a slow process.

I need a bit of a boost to keep my spirits up as I have had the illness now for about 14 months and know it can fade in two years to five years but I am getting impatient.

Anyone want to share how they are coping ?

Claudiaclaws Sat 01-Jul-17 00:18:01

Hi I have just been diagnosed with Polymyalgia. Please can you tell me, what dose of steroids you started off on. I have been prescribed 15 mg a day. I absolutely hate taking them too. Also I suffer with awful pain in my thighs which makes walking very difficult. Do you, or does anyone else for that matter you have this?
Along with all the other symptoms.
Nankate I do hope you start to feel better soon. I do sympathise.

NanKate Sat 01-Jul-17 07:42:43

Good to hear from you Claudi. Sorry to hear you too have PMR but at least it is not life threatening and will eventually go.

Yes I too started on 15 mg a day. Some people respond very quickly to steroids and the horrid aches and pains diminish but it took me a month or two to feel the benefit. Yes I have ached in every part of my body and I felt I was wearing a heavy set of armour when I dragged my body about, most of those symptoms have gone.

Steroids made me go from hyper feelings to floods of tears but fortunately the old me has returned.

My problem now is fatigue I need to rest and sleep regularly during the day and I feel I have a temperature on occasions.

I need to go now but will come back later today with info on a very useful book on living with PMR written by Kate someone.

Keep going the aches and pains will go. flowers

NanKate Sat 01-Jul-17 07:47:55

PS Claudia yes I know a number of people with the illness, but none in my family. If you type the word Polymyalgia into the search box at the top of the page you will find a number of threads on this illness from last year that you will find helpful. Best of luck.

Anya Sat 01-Jul-17 08:02:30

Sorry to read that you are still in the throes of this illness Kate despite improvements. Knowing you and what a get-up-and-go sort of person you are, you must be very frustrated by the tiredness.

Try to hold onto the fact that it will go, and probably sooner than you think.

Let's have another meet up as soon as you feel up to it flowers sunshine brew

NanKate Sat 01-Jul-17 08:56:37

Thank you so much Anya. I have had a bit of a bumpy ride in the last few weeks and have only just returned to GN after a break. I'll be in touch by email shortly. smile

I have a new email address which I will send to you.

annodomini Sat 01-Jul-17 10:01:26

A couple of weeks ago, I took my last steroid tablet after six years of ups and downs and finally a very slow reduction recommended on a forum
healthunlocked.com/pmrgcauk/
and Kate Gilbert's book Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition, available from Amazon either paperback or Kindle edition.
I hope you get rid of it sooner than I did. Good luck and better health! By the way, the fatigue still catches up with me some days and there's no option but to have a nap.

NanKate Sat 01-Jul-17 16:24:02

So happy for you Annodomini it must have seemed like a long haul.

I am following the suggested reduction route of fooling the body by going down and back up with the tabs. My DH has made me a chart of what to take on what day. I am going to beat this bl**dy illness if it is the last thing I do - SO THERE. grin