Absent without leave: Hi everyone it has been a... - PMRGCAuk

PMRGCAuk

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Absent without leave

Lilymaerose profile image
3 Replies

Hi everyone it has been a longtime since I wrote last. Lots of changes still have PMR and GCA but have also had both knees replaced, the first in September 2016 and the 2 nod finally in March this year. The first went really well, the 2nd more difficult but getting there. Was just recently down to 1.5 mg preds but have just gone back up to 2mg as bloods markers gone From 22 - 38, not so good, will probably have to go up higher again. I am choked as I thought GCA was going into remission but all the head pains have come back.

Anyway I am grateful to be out of a wheel chair, also lost 3 stone and am much more mobile since April, I still have ups and downs mostly down to the divorce I am still going through, complicated because of the business. Decree nisi should be through soon then I have to wait on the house and business being sold. Not sure where I am going to live yet, that will depend on the settlement.

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Lilymaerose profile image
Lilymaerose
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3 Replies
SheffieldJane profile image
SheffieldJane

Hello Lilymaerose,

You've had quite a journey. I don't expect the stress of divorce has helped your health at all. However right it all is and how civilised you try to be, I think it is incredibly painful for all involved.

That's an amazing weight loss, I am glad you have improved your mobility. It will be better when you can see the future a bit more clearly. I hope you have a good supportive network around you. I expect you will need a bit more Pred to get you through this bit. I hope GCA is going into remission.

Lilymaerose profile image
Lilymaerose in reply to SheffieldJane

The weight loss has been a natural progression as the steroids went down, so did the weight. I was on 60 mg a day to start 3 yrs ago. Then not being mobile now both legs work even though one is not right yet, it may need doing again. I am a lot more active again.

I have some very supportive friends and I don't know what I would have done without them, they have been real stars

I must say the last 3 years have been the worst of my life but am glad to say that things are slowly looking up

Jackoh profile image
Jackoh in reply to Lilymaerose

What a lot to have gone through!! So pleased that things seem to be picking up and that you have a good support network. Just need now to try to concentrate on getting this PMRGCA well under control. Best wishes Jackie x

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