Posted , 16 users are following.
I was diagnosed with PMR and GCA 11 months ago. Still on 20 mg Prednisone but seem to have several side effects. My face looks puffy especially my cheeks plus I have put on weight
Not responding as well as my Rheumotologist would like. Was wondering if anyone else has suffered from side effects and do these go was you come off Prednisone??
Any feedback would be appreciated
1 like, 22 replies
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Reeceregan barb2540
Posted
Hi barb2540
Welcome to the world of chipmunk cheeks, buffalo hump and midriff muffin! The 3 notorious areas that seem to respond so well to the pred weight increase. (Yes, I can joke because I have them too.. 😩
. My face at times swells more than just the puffiness. And it feels like my cheeks will bust and the pressure behind the eyes feels like water will spill out and run down my fat cheeks. Also have both GCA/PMR, started on 50mg end of May this year and now down to 12mg. I am responding better than the rheumatologist expected but it hasn’t been an easy tapering and I will be slowing it down and using the DSNS method once I hit the 10mg. Lots of other side effects as well but I’m still alive, it’s not cancer, and we will improve. Stay positive as much as possible. I still have really bad days but I’m getting there.
barb2540 Reeceregan
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Anhaga barb2540
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Reeceregan barb2540
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Oh dear, you poor thing! That’s a setback you didn’t need! I have been very conscious of being a falls risk and it’s something I dread happening as I have a tendency to walk like a duck some days if the pain kicks up a notch. I do have bulging discs in the lower back which aggravates things you see. And yes, I have heard the same nasty rumour about them being only treatable not curable, but I am not a medically trained person so can’t confirm that. Hopefully others will come along to answer that better than I. While I seem to be responding well I’m not sure it will stay that way, as I honestly feel my rheumy is rushing my tapering. For some reason he is hell bent on getting me down to my ” psychological” dose, the one my body can drop to and still function. I have slowed his program down twice now, and intend to even more, as I am never totally pain free between drops. I do believe that the fact I was very fit and active, into yoga and modern dancing, with no health problems prior, has helped in my recovery to date but it also took its toll on me mentally trying to adjust to basically becoming immobile and on a walking stick overnight. Big shock! I had lost 9 kls in a few months and was only 49kls to start with, but the weight loss was all muscle, so I have a long way to go yet. Take heart, you WILL improve, and although your journey through this may not be as smooth as others, you only have to listen to some of the other journeys to realise it could be so much worse. Look for any little positive and hold onto it. Personally, I like my chipmunk cheeks, they hide my wrinkles. There is light at the end of the tunnel you’re crawling through at the moment. 💪
Reeceregan
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Barb, I was also going to say I take my inspiration from Michdonn, wait till you hear his story, and low and behold, here he is below! He’ll pep you up! Good on you Michdonn, keep on skiing! 💪💪
EileenH Reeceregan
Posted
"Physiological dose" - has autocorrect been at your post!!!!
Autoimmune disorders are generally not curable - but some of them have extended remission periods. PMR is a particularly friendly one in that when it does go into remission it is more likely to stay there than others but even it can reappear. The propensity of the immune system to go haywire remains - so a seere enough prod can wake it up. I do know a few people who have had relapses and they all say - I thought I was looking after myself but i wasn't really.
Michdonn Reeceregan
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You, betcha Reeceregan with a smile on my face. 🙂
Rimmy barb2540
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Hello Barb
I was diagnosed about the same time as you so I know like me and many others you will already be feeling 'when will this ever end' !! Fact is as many on this forum will attest - it can take longer than we wish and 2 -6 years is fairly typical (some longer). But despite the stuff we all complain about - weight, round faces etc I think most agree we'd rather have the Pred than suffer the alternative aches, pains etc. Still at 20 mg you should be feeling reasonable so unsure what your Rheumy is unhappy with ? Tapering down will most certainly assist with your face though - I have been at 12.5 mg for the last 2 weeks - and my jawline has started to slowly reappear and my weight is stable thank heavens.
So take heart - things will improve and you will get your face back and weight may not be such a problem - but in the meantime lowering carbs can really help.
All the best
freda07782 barb2540
Posted
Hello, I have been quite lucky with my tapering, and am now down to 2.5. However, now my "chubby cheeks"have gone my wrinkles are showing up much more prominently! Yes, I'm not a spring chicken any more but I did like the fuller face! Just thought I'd add this to try and make you feel better!
alley2 barb2540
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Hi Barb I have GCA Since May 2016 I too had the moon face hump neck belly handles when I got ill my weight was 75 kilo and on 50 mg of pred I went up to 89 kilo now I am 80 kilo and 8 mg of pred I never thought I would get to where I am but here I am hang in there all we can get there 😀
EileenH barb2540
Posted
"Not responding as well as my Rheumotologist would like"
What a rheumy envisages he would like and what actually happens are more often than not two very different things. Nothing he can do will change that wither. Part of it is because different patients absorb different amounts of their dose of pred, anything between 50 and 90% in fact but it is usually quoted at "70%". So if you are a 50% person you may only be getting the benefit of 10mg-worth of the 20mg pred while MrsI'vegotdownto13mgalready is getting 90%. So she seems to be doing so much "better" than you to a rheumy who forgets/ignores this factor.
Weight gain can be avoided/reduced or even remedied by cutting carbs drastically. I lost 35lbs of pred weight while still at 10-15mg - it was slow but it happened. Lowering your carbs also reduces the risk of developing pred-induced diabetes.
For some people they start to go once they get to about 10mg but for others the weight gain, hamster cheeks and buffalo hump remain until they are off pred altogether. One lady discovered her weight was going when her skirt fell down in a shop!!! She just hadn't noticed it melting away around her waist! On one particular form of corticosteroid I had all the effects you mention plus a black beard to top it off! When I was switched to a different tablet and cut carbs a lot the weight around my waist started to disappear within a few weeks and then the buffalo hump went. I'm still overweight but that's because I eat the amount of carbs that keeps the weight stable - I'd have to stop them altogether to lose more I suspect. But everyone is different.
Michdonn barb2540
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Hi barb2540, Pred side effects, weight gain, burning mouth, high blood sugar, diabetic neuropathy worse, I have been a type 2 diabetic for 55 years, loss of balance, I think that covers my side effects, but I am still smiling and continue on my PMR journey with a positive attitude. Without the Pred I was in a wheelchair, with Pred I am looking forward to a great ski season. So I have a smile on my face. 🙂 Good luck on your journey. Try to be positive and smile..
christophe38948 barb2540
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After two months my face was twice bigger than normal. You must be prepared for many side effects in the future.
Good Luck
CW
Babazaga barb2540
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Do not despair, Barb.
I've been on Prednisone (GCA) for 18 months beginning with a 40 mg dose. I think I've had just about every side effect that's mentioned in side effects. The most noticeable is the "chipmunk cheeks", the humpy back, and the weight gain. Then there are the muscle cramps (take potassium and magnesium supplements if you experience this), headaches, general sense of being out of focus in terms of memory and planning etc. I am down to 2 mg and hoping to finally get to nothing. If you watch your carbs and calorie intake you might keep the weight gain at a minimum. I gained about 7lbs and am slowly reducing with 3 lbs. left to go. (Weight gain seems to be in the stomach area). Prednisone also reduces collagen which tends to make your skin really unattractive as in wrinkly! Since I am 79, that would have happened anyhow, but the difference in one year is startling. And then there's thinning hair!! The good news is that at least I'm not blind and hopefully there's an end in sight.
I hope you get nothing more than chubby cheeks and a bit of chubby all around---both can be dealt with as you reduce your dose. Things improved for me when I got to about 5. GOOD LUCK.
margaret89358 barb2540
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