Hi new to the site today ...I have polymyalgia my blood markers were normal on my last visit to my specialist so he wants me to wean off med

[lilly59]

I have been on Prednisolone/Celebrex & folic acid for 18 months now ...then 4 months ago he gave me Hydroxychloquine......... now says that I have to cut down on steroids now down to 4mg daily and next month cut down on the Dmard drug ... but already 2 weeks in ..I have no energy ..cannot walk a great distance and full of pain ...anyone had the same affect ?

[Marnie87]

Hi, I have fibromyalgia, sorry to ask but do u no the difference between fibre and poly?

My consultant tried to cut mine down from 40mg to 35mg, after 2 days I felt awful so I went back to 40mg and had a right fight with her but she has now agreed 40mg for the time being.

Tell them how you feel and I hope they let u go back on them

Good luck xx

[lilly59]

I dont know a lot about Fibromyalgia ...but Polymyalgia is large muscle pain esp inthe neck shoulders hips & lower back ... my blood plateletts always come back high with inflamation ..... I am always better on high dosage of steroids ..got to go back for bloods again tomorrow ...I know they will just up the steroids again ...but to me they just mask the problem ....... hugs to you hope you start to feel better soon x

[Hidden]

As far as I know the only treatment for polymyalgia is steroids.. once under control people often stay on a low maintenance dose.. my aunty has polymyalgia and can can get v bad headaches if her steroids drop too low to keep symptons in check.. she came off them for a while but the symptons returned so had to have another course of steroids,my gut feeling is she may have to sty on a low maintenance dose!

I have fibromylagia this also muscle and joint pain and also Rheumatoid arthritis

[lilly59]

Steroids are not making a marked affect on me.....that is why the decision was taken to put me on a damard drug which is slow releasing so can take 6 months to kick in

I also have Rheumatoid arthritis

also am waiting to see a neurologist because of electric shocks in my neck & back

All this & 18 months ago i never even took a paracetamol ... got all this after a bout of tonsillitis

[Victoria-NRAS Partner Moderator NRAS]

Dear Lilly

Welcome to the site! I hope that you will find a lot of support on here about your RA, but I unless there are a few people that have polymyalgia rheumatica (PMR) and RA, unfortunately this is not such an area of expertise for us.

You may well be in touch with some of these organisations already, but if not, there may be some useful information on their sites:

PMR & GCA UK North East Support

pmr-gca-northeast.org.uk/in...

(Based in North East UK, but think they are happy to help anyone with PMR)

Arthritis Care section on PMR:

arthritiscare.org.uk/AboutA...

Arthritis Research UK information on PMR:

arthritisresearchuk.org/art...

I hope there will be something useful in there, as well as getting the support from people on this site, who may not have PMR but do have RA, as you do, and many of whom like you are dealing with more than one long-term condition.

Kind regards

Victoria

Helpline & Information Coordinator

[lilly59 in reply to Victoria-NRAS]

Hi Victoria

Thank you for the links

[ohbother69uk]

hi hope you dont mind me asking but what is polymyalgia ?

sharon x

[lilly59]

Hi here is a link about Polymyalgia

patient.co.uk

I have had it now for 18 months ......... just don't seem to be getting any better

The only time I can get about is when I am on high doses of steroids

I am currently taking a Dmard taken it for 5 months now with no effect as yet

But like any of these related illnesses everyone thinks you look really well because of your lovely round face (steroid induced)

sorry I try to stay positive must be a bad morning ...............

[linnieh]

Hi all of you with polymyalgia......(have RA to) have had this painful illness for two years now. On 6mg pred and 15 mg MTX untill Dr phoned to say liver not liking MTX. Stopped it ,now he's phoned and said white blood cell count not good. Startng to hurt all over so back up on pred,have tried so hard to come off but it all comes back. Feel fat,hot and round faced. Have tried to look at positives but don't quite know who I am anymore. Feel so worn out too. Sorry to moan guys but I know you've all been or are there. Seeing specialist in two weeks so I expect have to try something new(more side effects) I will stopping moaning now and wish you a wonderful pain free sleep keep well x