I was doing agonised with PMR and GCA last November and prescribed 40mg of Pred. I have managed to reduce down to 7mg but not without its problems.
I initially gained nearly a stone in the first three months which made me feel depressed so, I have attended Slimming a world for the past eight weeks! I have followed the eating regime carefully but have only managed to lose se 5pounds!
I have been told that the steroids don’t increase weight it’s the fact that you eat more! Is this correct? At this rate it’s going to take me till Christmas to get back to my original weight😩
I would have said that losing 5lbs in 8 weeks was pretty good going when on steroids. And weight loss is always slower than weight gain! However hard you try. Just because others at a slimming club lose a lot on various weeks it doesn't mean everyone does.
Steroids also change the way your body processes carbs so it isn't just eating more. They make your liver release spikes of glucose into the blood. That triggers insulin release - the excess insulin makes the excess sugar turn to fat deposits. To control weight well when on steroids carbs are important - and SW tends to be quite carb-centred, they work on low fat. My daughter uses it - I find it unbelievably complicated!! You could save your money and just try with cutting the white/simple carbs you eat - and be patient.
Thanks Eileen! I know I’m a little impatient but I’ve always been quite slim and it’s hard to accept the weight gain! I should be grateful that the doctors were quick to diagnose ! It could have been such a different story.
Hi anne...first, at the risk of sounding "dumb", I don't know what a stone is, (I esuspect it may be an UK term??), but in any case, I DO know it is a reference to an amount of weight, and to that I CAN relate! I've only been recently diagnosed with pmr (2 months) and have gained 13lbs in the past 2 weeks!!! MY eating habits haven't changed AT ALL! In fact, perhaps I've been eating less as I'm often times nauseous! So no, I'm sorry to say I've got no words of wisdom. I can only say I can I commiserate with you!
Anne, I gained 20-25 lbs, on my first year. I am down to 6 mg and back to my normal weight. Cut all sugar, reduced carbs and exercise, no real diet, lifestyle change. Good luck on your journey, stay positive, active and try to smile. You will get there. ☺️
Hi Ann I was 10st 2lbs when I went on steroids March’16 I went unto 12st 8lbs by the September ‘16. I listened to other PMR suffers on this site and cut out most carbs from my diet. As like you I was very miserable with the weight plus all the other side affects of Predesolone I am now 10st 9lbs and feel so much better. I am on 7mg going up
A bit after a lot of stiffness, feel so much better for it.
I would like to ask anyone on this site I am off to Krackow in two weeks time, a lot of walking etc, does taking part dose at night and the rest in the morning., does this work better than taking all in the morning.
Good luck Ann you can lose the weight. Just remember the carbs.
I'd be wary of changing your dosing routine when you are already changing everything for your holiday. If a single dose has worked for you so far, better stick with it. If it hasn't been working as well as you like, try the split dose starting now, so you can test it for a few days before your trip. I think the standard way to split the dose is 2/3 morning, 1/3 evening. But many tweak this depending how it works for them.
Just saying--- I take ab a 1/3rd at 2am and the rest sometime after 8am and it has worked well for me. Good idea to try before you go. Because of slightly raised markers i put myself on 20mg ( i tried 15 a few months back) as i was going to Canada and i wanted to be fit as i knew we would be doing a lot of walking (did 23,000 the first day). Anyway i felt wonderful on 20mg didnt realize how bad i had got. Im now on 15mg and will try to go to 12.5mg tomorrow. 5mg then 7.5mg. I will be going into my 5th yr with PMR but whose counting it is what it is! Have a lovely holiday.
Hi liz, not long after I started pred. I started 2 split my dosage (15mg) 2x p/day as I felt taking it all at once didn't get me through a 24 hr. period. It didn't work! After about 1 week I went back to taking it all at once which now is working just fine. Btw...I'm in the US, and don't understand the weight references. I can only assume you gained weight at 1st...right??? Have a wonderful, safe vacation!
I wouldn't change things if what you do now works well. Possibly have enough pred with you to be able to increase the dose if you find you need it. Splitting the dose if for when the pred effect doesn't last for the full 24 hours. It doesn't magically provide an extra dose of energy and endurance.
But really - could you do this at home? If not, what makes you think you could do it there? Don't be too proud to say while you are there that you need to rest. September should be cool enough not to be too tiring, but if there is something where you are tired and there is a cae you could sit in a have a drink while the others get on with whatever, do it. I did that in China and Canada - I didn't miss an awful lot.
Thank you Eileen I will stick with what I do at home but take some extra 1mg with me Just in case. I think I would probably enjoy sitting in the square watching the world go buy.
On a different note did you see the Nadal March from the US open fantastic.
Thank you Anhaga for your comment I will stick with what I do now.
To any of you folks out there whom aren't too busy at the moment to listen to my pitiful woes, (which are embarrassling NOTHING compared to so many others. I'm just feeling so danged emotional and teary right now, I can hardly stand myself! I'm in such a "Funk" and I don't see it ending anytime soon. I'm sure it will, it just doesn't FEEL that way right now. Unfortunately, every person I'd normally confide in right now is unavailable. So you, lucky folks, are kinda Stuck with me (or not, whatever). I'm sorry, just needed to take a moment for a pity-party. Hope you're all doin' better than me! Have a nice rest of your weekend!
Hi Anne, I think you have your answers now but just to add my pennyworth - I am an experienced dieter, having all my life struggled with weight. I usually sit at about 10st and a bit. I started on 15mg pred in May and am now at 10mg. My weight went up to just about 11st. Like you, I have actually managed to lose some weight, about 7lbs, but it has taken me soooooo much longer than it would normally. I have accepted the very slow speed of weight loss, I try to stick to 1200 calories (bearing in mind the carbs) but it's not easy. Very best of luck to you, patience is essential. I'm off to France this week for 2 weeks, I expect it will all pile back on again as I don't have much intention of sticking to 1200cals!!!
Thanks for all the words of support!
I’ll keep going and hopefully, once I am more active, the weight will return to pre GCA and PMR 😀
Bits of it, the last 2 sets I think - saw bits of the Federer/Kyrgios match. Now that was an exhibition!!!! Almost all the US Open stuff here on Eurosport 1 is overnight - and I assume on Eurosport 2 during the day which we don't get. We get the Vuelta for most of the day - and today it is the Tour of England (in Wales...). Yawn - the scenery in Spain is worth watching for though!
I was a bit disappointed with the Federer v Kyrgios match I thought Kyrgios would have put up more of a fight and the commentator kept saying he thought Kyrgios would win. I thought the Nadal match against that Russuan was brilliant though, the Russian was incredible. Federer on tonight at some unearthly hour.
I know - I thought that Kyrgios had grown up a bit and would play properly. He probably grew up a few months during Federer's demo! That will have been a British commentator? I have the pleasure of Boris Becker and another German ex-player who are very realistic about anyone other than German players! They are currently suggesting Kohlschreiber could still win... My favourite commentators are the Swiss pair - even rip Federer up when he's making a mess. They know when to shut up too. And yes - the Russian was fantastic - he's going to be worth watching. But Nadal does seem to be having to work a bit harder than he used to.
Kohlschreiber was impressive, I did not think he would win and the other guy Zverev was seeded 4. Goodness knows why he is seeded so high as he was not that brilliant in the French Open either. Federer has not been at his best so far in my opinion, he is 36 though. He is impressively laid back on the other hand. Nadal does seem to be pushed a bit more than usual, I wonder how many clean shirts he brings in with him as they always look sodden.