Doing ok

Just to update - still reducing using the snail pace method 1 mg a month Dare I say it is working well - now on 3.5mg! Have taken paracetamol a few days when needed but have not had to up the pred. Weight is coming down too. 2 people this week noticed! (9lb less than 2 months ago). Not trying to be smug but hoping others see there is light at the end of Pmr x

16 Replies

  • Not "smug" at all, Suzie, just relieved! Congrats on being at 3.5 and finding it successful, and long may that continue.

  • And oh yes - when someone actually NOTICES you have lost weight it is such a boost isn't it! Well done!

  • Good for you.... ever so slightly jealous, but delighted for you and reassured that it can be done...

  • Well done, in getting down to 3.5 and for losing the weight! Are you dieting, or is the weight just disappearing? I'm on 4.5mg, working down to 4mg, and feel like a lump, despite my attempts to eat carefully (not a diet, just trying to not eat high-calorie foods like cake, biscuits, pastry, etc)

  • My weight has fallen alongside the pred dose and am nearly at 4.5mg now - but I have been VERY strict about what I eat in that most of the time. I don't eat carbs apart from loads of veg and a bit of fruit. I haven't given up carb totally though - if there is something I fancy when we go out (which is at least once a week, every day when away from home, we're retired and live in Italy ;-) ) then I have it but always make sure it is a small portion - especially if the dessert menu looks worth it. I can't eat wheat anyway but that just makes it easier to not eat processed carbs - even though here there is plenty of non-wheat carb to eat! Even then I have only lost at about 2 lbs a month - but it can be done and what is amazing is it is that midriff bulge that went first by restricting carb.

  • Keep avoiding the high cal foods - it must be good for you! I have been following the anti inflammatory diet when I can- but always cheat by having a glass of wine each night as a treat. The major thing that works for me is to cut wheat and dairy and try just to eat protein and lots of salad and veg plus a couple of pieces of fruit daily. When we go out to eat I choose carefully but have do have carbs etc if I want them or if it seems rude to refuse. Generally I know if I avoid the carbs I feel better and will gradually lose weight. Also, I have been excercising more as I have felt better, so must be burning more calories. Hope to lose another half stone then I'll be really pleased.

  • Yes it is encouraging. I did not realise how much weight I had put on until a family photo last week. I am down to 3mgs. The last step was very slow to achieve, so now also to tackle the weight....which is hardest?!

  • See my reply to Jeannie above - but it has just taken me nearly 2 months to get from 5mg to alternating 1 day 5/1 day 4mg. So that normally equates to a couple of pounds in weight now, it has slowed. I suppose it all depends how you regard hardest - losing slowly is much better for you, especially your skin!

  • I think my fat face in photos gave me the resolve to diet! Also I was fed up with feeling sluggish. Try cutting portions and try avoiding wheat alternate days at first to see if you feel better without

  • Good Morning Suzieh

    Thank you for posting your update, I have suddenly after 11 months of being on Steriods put on weight and am feeling very very down about it so it is SO GOOD

  • Hi

    That's brill news

    I am on a reduction of 2.5 per month and think 1mg would be better so will slow down a bit. Bit like the hare and tortoise !!! Slower with this condition is definitely better.

    Now on 12.5 day from 60mg and same as you weight starting to go especially the moon face and fat lumps on my neck and shoulders.

    Hope for everyone !!!!!

  • Sorry hit the wrong key! I really just wanted to say that your post has given me hope - thank you. Lassielou

  • Good, Glad my post helped. I have had PMR for just over 2 yrs and have been taking the steroids for 18 mths. Use the very very slow method for reducing ( as posted on here) and hopefully you will not encounter too many problems along the way. My advice is to stick to a dose until you feel physically and mentally ready to attempt a reduction. Wait for a quiet period with no stressful events looming!

  • I have managed to get down to 1/2 mg per day but I have not lost even 1 lb. I gained 50 on the pred & went up 4 sizes in clothing. Wish I had good news about the weight.

  • You have done so well to get down to such a low dose of steroids. Hopefully feeling good about that. Now better weather is here try and eat much more veg and salad and cut out the carbs. Try and get outside and walk a little more too - always makes me feel better! If it doesn't work ask Dr for a thyroid check to make sure your thyroid is working - if under active ( as mine is) you may need to get help with this, then the weight should slowly come off.

  • Brilliant Susie. I'm definitely going to try this too. My last drop was 7.5mgs and 5mgs on alternate days at my rheumy's advice but it was too much for me and I felt terrible for weeks so was put back to 7.5 for the last 10 weeks. Seeing him again next week and will definitely push for the slow train next. Angela x

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