PMRGCAuk
7,379 members12,103 posts

The Real me is still there

I was Diagnosed with PMR in 2014 and started on 15mg of Prednisolone for two weeks, Then up to 20mg which gave me some Relief,Tapered to 9mg Then had a Flare and felt just as I had when I started with PMR-GCA, Went to my Doctor who thought GCA might be involved as well, So up to 40mg.From this I have been down as far as 8mg another Flare so up again,Rumie persuaded me to try Azathioprine two years ago, Was soon off that after horrible side affects.At this moment in time I am Reducing using the slow stop method and am on 19mg I am still in some Pain always have been, My biggest problem is the weight I have put on I am still the old me till I look in the Mirror and I could cry,I was never a great beauty but was lean and fit.It's been a real help over the years reading the posts on this site keeps me feeling Positive knowing I am not going through this alone, Thanks for all the Help.

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Looking at your photo, I think you look fabulous! Full of life, happy and youthful. The real you is still there and others will see it. If you're really worried about the weight, the advice on this forum is to cut carbs, and many people have found that it works for them. I'm lucky that I haven't put on weight, but I've acquired "chipmunk cheeks", which is amusing and still quite a novelty for me as I've always had a really thin face!

Keep smiling!

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Hi pakien,

I think lots of us worry about the weight, and yes it can be a downer, but it does reduce as you taper. Plus if you stick to a good healthy diet - fruit, veg and cut down on the refined carbs it will help. Being in pain and immobile doesn't help either, but if you can get your pain under control you may feel a bit more like taking more exercise - it doesn't have to be anything too strenuous - just some gentle walking, or Pilates, Yoga or Tai Chi. I found Pilates good for strengthening leg muscles and getting rid of a podgy tummy - and it makes you feel better too!

The old you is still there, and she will resurface one day - even better and stronger!

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Cutting carbs does work to manage the pred weight problem - but for some people it has to be very strict. I can't lose weight unless I am down to under 30g utilisable carbohydrate and that really isn't much at all. Even an apparently small amount of fruit can tip you over the edge. But do investigate - I lost 35lbs.

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Once I was restricted to the house and my husband did the shopping I lost a stone. I also reduced to a manageable 5mg Pred. It took 6 months to change my mind about what I was allowed to eat as "Healthy" as he has lost loads of weight this year with his concept of eating well. I don't eat like him and I am immobile blah blah blah in my head. Giving up sugar restricting carbs eating less and avoiding triggers that made me want food for comfort worked. It was really hard but 1/2lb a week crept up to a stone eventually with a few no loses weeks. I have tried to leave who I was last year behind and celebrate what I could be next year if I stick at it. With the odd blow out now and again that is. I will be back swimming and walking but most of all fit enough for my family regardless of my size and shape. You are strong and determined hang in there 💪💪👍

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Others have given you the practical advice I just want to offer solidarity on the " I could cry " feelings. Most of us get them. But I think we are crueller to ourselves and more judgemental than anyone else would be. Our gross is their cuddly. I have realised that I have kind of fallen out with my body that has let me down so badly. Even my arms don't look like my arms. I think the only way forward is to accept it and look after it with a wholesome diet, daily gentle exercise and plenty of rest and sleep. My downfall has been almost irresistible sugar cravings, but I do realise ( from different habits on holiday) that if I don't start giving in then they are not so bad. My Fitbit step counter gives me a sense of control and achievement. I feel sure that your body will return to its lean type once it stops being confused by steroids.

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I understand how you feel. For 3 months I ate low carb low sugar. Yes, I lost weight, but looked a bit scrawny. Visiting my 94 yr. old mom (who's mental state is declining) I fell off the wagon and ate ice cream, candy, a lobster roll and potato salad! I felt fine but hope I can find my way back to healthy eating! Emotional eating makes me feel out of control.

Fading beauty is rough! I have veins sticking out, brain is a bit clogged at times and am hard on my appearance. I consider injectables but waver. Will discuss with Rheumotologist tomorrow. Dating has been challenging because I go to sleep early and don't want to drive in the dark. PMR restricts my every move. Exercise but not too much, rest but not too much, erratic sleep, tapering. So glad I eliminated work from this equation.

Sorry about the rant! That's what I do after 5:00 am Pred. dose. I am thankful for feeling better and forum friends who ease the journey.

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