more predisone

[Celestee]

a coupe of weeks ago I was hopeful because I was going down each week 1 mil of meds. until last when my neck pain and headaches return. called dr. he ordered to up the meds and get to the lab AGAIN to check levels. ugh

i just want relief but prednisone makes me CrAzY.

[daveD]

hello pascua.if i can offer you one piece of advice it is do NOT try to rush this journey you are on, it will get the better of you every time, My advice is Slowly does it & take advice from the girls,?? on these forums.try to chill, Good luck with your journey.Dave.

[Celtic PMRGCAuk volunteer]

pascua, I wish I could give you good news, but unfortunately it is quite common to suffer from flares in the inflammation together with returning symptoms during the early days following diagnosis and especially when anyone tries to reduce the dose before the inflammation is under control. So your doctor's request to get your blood tests repeated is good advice - some doctors don't bother to do this - those test results can be used as a guide along with the symptoms as to whether or not it is safe to reduce.

Unfortunately there is no fast route to getting off steroids - we just have to learn to give ourselves lots of TLC, 'go with the flow', not overdo things on a 'good' day. If we learn anything whilst suffering from PMR and/or GCA, it is patience! You will get better.

[Celestee in reply to Celtic]

Thank You

I have had beatiful days then Crash exausted. Always cold. Warm showers, heating pad to neck, warm sweaters are a relief.

but even sleep is uncomfortable,

I can be patient its my family who just dont get it.

Thanks again

[daveD in reply to Celestee]

yes family & friends just do not get it, it can be a tad boring when you get comments like, You are looking well.there is a dvd&booklet called : You are not alone: which I bought & passed onto family.perhaps one of the more knowledeable ? Girls will help you with info on that.try to stay positive.Dave

[Celestee in reply to daveD]

Thanks I will check it out.

[Celtic PMRGCAuk volunteer in reply to Celestee]

Pascua, as Dave has suggested, a good read for families to help them understand what you are going through is Kate Gilbert's book 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide', available either direct from the National Charity PMRGCAuk, website pmrgcauk.com, or from Amazon, and/or the DVD available from the North East Support Group pmr-gca-northeast.org.uk.

[suzieh in reply to Celestee]

Try a bath or hot shower and a couple of paracetamol before bed. They will help you sleep pain free for a few hours at least