Trying to think of steroids as a friend!!

[wendyanne49]

Hi there

I was diagnosed with PMR in February of this year. By the time I had convinced myself that not being able to get out of bed or get up out of a chair was not normal I was in a pretty bad way. Only three months before I had been trekking in the Himalayas so was fairly fit. No underlying health problems so at 63 I was lucky. My doctor calls my attitude to pain etc as 'stoical'. I now think I was in denial!!

Anyway - I was started on 30mgs of prednisolone. My GP said from the start that it was important to get the dose down so I followed instructions and by the beginning of June was down to 10mgs. But I was never free from symptoms. Always had aches and pains in my legs and shoulders. I thought that I had to just put up with that as it was more important to lower the dose as quickly as possible. I lowered the dose to 9mgs and very soon had jaw pain and stiffness. It was bad first thing in the morning and coupled with slight tenderness on left side of head I was pretty worried that I was developing GCA.

Back to the GP who raised the dose to 15mgs but that didn't work so was put back three weeks ago to 30mgs. Great fun!!!

I am being more sensible this time as I believe that there is too much pressure to reduce the steroids. Without them I would be in a bad way physically and the added threat of GCA has convinced me that I should look upon steroids as 'friends' and not the enemy.

I am down to 19 mgs today and will stay there for a few days before I drop another mg.

Even at this level I have a degree of stiffness in my legs but the severe jaw pain is not there nor the tenderness.

It has been hard to accept this illness - a disorder I call it. I was very fit and active and my lifestyle has had to change for now. I hate my moon face and the increased weight although I try to keep that down with sensible eating. I was convinced that I would be one of those who would have this beaten in the two years minimum. But maybe I have to accept that it will take longer.

My GP is ok. She hasn't referred me to anyone which I think is ok. I can talk to her easily and I have the benefit of being near the local PMRGCA support group here in East Anglia.

I have always been a bit wary of focus groups/forums etc connected to illness as I have always thought that it is only the bad things that get talked about and not the successes. But this community seems balanced and informed and that is why I have posted my first blog.

PMR and GCA do need to be recognised more and I applaud the work being done to get the government to do more in this field.

Not sure you'll see me competing in Rio but am loving the Olympics! One day we will be fit again!!

Wendyanne49

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Hi there, love your attitude! Being suddenly the victim of such a debilitating condition is mentally and physically difficult. PMA not PMR! Unlike you steroids are my enemy as I saw no real benefits from taking a low dose, so ditched them altogether as I could not live with the dizziness, mood swings, constant hunger and nightmares. Good days are few and far between but today I walked (slowly) for 1 hour so I gave myself a huge pat on the back and am so thankful to be able to do that without major pain. Small improvements are a joy but meanwhile I am still researching natural remedies to try out. Must be doing something right, first time in years that my fingernails are a decent length :-).

[Hidden]

Hi Wendy,

What a great, positive attitude you have and also your GP sounds wonderful.

Pats