Hi again. I'm a new GCA patient confirmed by biopsy, having been on 60 mg for 2 weeks and a 2nd week on 50 mg... in other words I'm 3 weeks into this. Bouts of exhaustion followed by energy spurts, and having a hard time sleeping. But here's my paranoid concern:
My weight is not rebounding yet. I lost another 2 pounds since I've started the PRED ( 10 pounds overall since i started feeling bad). I thought I'd have started gaining weight back again by now.
My appetite has improved, and I'm eating more, so should i ve concerned about my weight loss?
Finally, my thoughts and prayers are with all who mourn the Queen today. I'mglad i was aluve while she was. What a reign.
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montebello
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weight loss is unusual, but as you say you have a very busy active life with lots of hard physical tasks. It is easy to forget that you have a serious systemic disease when Pred is giving you this massive charge of ( fake) energy. You need to surrender to the disease somewhat and pace your activities. Muscular recovery is much harder with Pred. You will recover sooner if you heed this advice. You may find that a magnesium supplement helps with the sleep disturbance. It’s discussed often on here if you search for old threads. It is gutting to be back in this position again but at least you are up on the tapering.
I was surprised at how upset I felt about the Queen. She was a constant symbol of goodness and duty in a world that seems to have forgotten decency and honesty. The biscuit tin with a picture of her wedding was a nice part of my childhood. A good person I think.
I hear you about slowing down, and am glad summer is winding down so that i can. Know that your comments are always appreciated. I'lllook into magnesium, and although im not British i share your feelings towards the Queen.
I kept losing weight for months after starting on pred. It could have been muscle weight because I have definitely lost a lot during treatment.
It could have been the fact that both lansoprazole and to a lesser degree pred ruined my digestion. I couldn't do a low carb diet. It gave me indigestion and made me lose weight.
This has gone off now and I have regained quite a lot of what I lost. I have never got very fat though.
Seacat30, I am the sane, my digestion went to pot, GP thought it was lansoprazole and tried other PPIs I ended up on famotidine which I still take. I am diwn to 1.5mg of pred daily now. I put on a lot of weight initially when on 15mg and when my digestive probs started (about 3 months in) my weight plummeted and I lost over a stone. My arms have gone thin and I think I have lost a lot of muscle. I hope to get back to dome degree of normality but don't know when. I hate taking pred, it's destroyed me
I gather it's not uncommon to lose weight initially with both PMR and GCA. I certainly did after both diagnoses as I completely lost my appetite for a while. But with the GCA in particular, after about a month, the 'munchies' due to the pred really kicked in, even though I was eating a low carb diet. I've since put on some weight as a result, although unlike you, I would have preferred not to! We're all so individual in our response to both pred (and the often accompanying polypharmacy) and to PMR/GCA. Hope your weight stabilises soon to where you'd like it to be.
Some people lose weight on pred - no-one knows why, it is just so, And as SJ says - you have a serious systemic illness. The pred is curing nothing, it is a management strategy for the inflammation that disease process causes - the disease process is still going on in the background and that in itself can cause weight loss.
I was surprised to continue to lose weight in the first 4 months after diagnosis and starting 40mg pred. Then came Christmas and i have since slowly put a stone on.
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