polymyalgia rheumatica?

Mgt

Hi Lynn

I just came across your message. I don't know if my experience of PMR can help. I was diagnosed 4 years ago and started on steroids initially 30 mgs daily and managed to get them reduced to 3 mgs in January of this year. Unfortunately my GP suggested reducing them further, so I did as I was told and took 2 mgs however, after a few days I started with head pain on the right side and pain behind my right eye, after 3 weeks of constant visits to my GP who was treating me for migraines, another GP in my practice contacted my Rheumatologist for an urgent appointment. To cut a long story short I was diagnosed with Temporal Arteritis (after seeing the Opthalmologist at the hospital) and treated with 50 mgs of Prednisolone daily. Thankfully this did the trick and am now on a reduction of steroids once again, today I am taking 15 mgs. The plan is to reduce by 2.5 mgs every other week until I get down to 10mgs then 1 mg a month down to 5 and then stay at 5mg. At present I am exhausted and very very sore but I am sticking with it as hopefully things will once again settle down. However, if I start with pains in my head and eye again I have to return to the previous dose of steroids and contact my specialist. I should also mention I am on 20mg of MTX, I was started on this when diagnosed with Temporal Arteritis as a steroid sparing agent.

If I can help you in any way please just let me know.

Sending hugs and healing.

Mgt

skezier

Hi Lynn,

Glad you have got so many folks that have got the same pop in, that must reassure you some?

Also glad the preds are helping you

Lynn you have so many questions running around your head do you think a double appointment with a gp to talk it all through might help?

Depends on the gp mind....

Got everything crossed your tucked up asleep now and leaving a ((((( ))))) and a huge bucket of hopes and fortitude for the morning. Love and a cuppa Cris xx

Hi Mgt,

Nice to met you and good luck with the reduction. Cris x

skezier

Hi Lynn,

I raised my self and I don't think I did too bad a job eh? My nan had some influence but she would have killed them for that one

Its all surfaced at the mo cus of father dying I guess.... I wish I had stood up to either of them once in my life Thy just knew how to hurt and I just wasn't wanted.

Hey its a long time ago now flower and its helped to make me who i am. I know people care here and thats made up for so much cus i ain't used to it

Glad you got good web site and people have helped you. I leaving a (((((( ))))) for one of them by the way.

I still think a talk through with some one might help but understand what you mean.

You get a good night and I think the alien is about to be born.....

Love and a (((((( )))))) as well as a bucket of fortitude and care. love Cris xx

ratface

Hi Lynn,

I have RA (since 1993/4) and had PMR diagnosed back in 2007.

Initially I was prescribed 17.5mg of prednisolone which started to give relief within 3 or 4 hours. For which I will be eternally grateful. My PMR was only in both arms, from shoulders to almost my elbows, I understand it can also be in the legs as well.

I was very lucky because I had a blood test the week previously so GP could diagnose PMR very quickly.

I do sometimes still get a pain in the muscle of my left arm but it is nothing like it was, thankfully.

Steroids initially were reduced by 2.5 every so many months, it was slow as sometimes after a reduction the pain started again, so then I reverted to the previous dose and then tried again a day or so later. Eventually I found that if I reduced the dose every other day instead of each day it was more acceptable for me. I was working at the time so needed to be comfortable with the amount of pain I could cope with.

I was told by my GP to take the prednisolone in the morning as if it is taken later in the day it would keep me awake, apparently it contains something which gives you a high.

I did put on weight but once I came off of the steroids the weight just disappeared (my appetite decreased).

The hardest reduction for me was from 5mg down. I did this by reducing just 1m the first day and normal dose the rest of the week. The following week I reduced the dose on 2 days. (Hope that makes sense to you).

I finally was steroid free on 10/10/10 (easy date to remember).

I did take a long time to wean myself off of the steroids but it was what I was comfortable with - pain wise.

Also I noticed early on while on steroids my temper was easy to flare and also the tears and feeling sorry for myself came more often. Watched a programme on tv at the time where a mother was speaking about her young daughter being on steroids (can't remember what for now) but she had the same side effects. Once I realised this was a side effect I was more able to control temper flares and when I felt down I told everyone so they understood it was only temporary.

Hope this helps you a bit and hope the symptoms of PMR are now in control.

Ratface xxxx

barbara12

Hi Lynn
Just popping in to see how you are doing, Its so good to see that you have had lots of advice off others with the same, it always amazes me how much info you can get off this forum.
You take care, and I hope you feel better very soon.xx

gretta

Hi Lynn

My OH has had Polymyalgia rheumatica for about 12 years in his shoulders & hips. At the moment he is on a maintenance dose of 5 mg. That seems to keep it under control. If he goes off steroids he gets the problems back again & has to start all over again at the higher dose. Doctor hasn't suggested he goes off them again so we are keeping fingers crossed that he can stay on the maintenance dose.

I am much improved after my operation in April, thanks for asking about it. After having the big op I didn't think I would be feeling as well as I do now 5 months later. Have an 8 inch scar under my right ribs which I am rubbing bio oil into it twice a day to try & fade it. Not sure that it is making it fade a bit, good job I don't want to wear a bikini. Seems to be that when you get rid of one problem another one comes along. I am having trouble with my feet now, the soles really hurt, doesn't help I suppose having flat feet. Have sent off for something called foot cushions, probably won't do any good, but you will try anything to see if it helps won't you.

Hope the steroids help you & that you are able to get down to a maintenance dose soon. OH is fine on that.

Gretta

dreamdaisy

Hi collywobble, I haven't a clue what to say so will just do this instead. ((((())))) DD