I was diagnosed with PMR in May this year (CRP of 128) and for two months took 15mg of Pred but my CRP levels only reduced to 29. I was also having worse headaches than normal so my rheumatologist increased the dose to 40mg. At that time, I hadn't had any weight problems, nor had my face started to "explode" - but it's made up for it over the last 10 weeks!! I've successfully (fingers crossed) reduced slowly from 40mg to 30mg over the last month but my face continues to grow, as does my chin/neck. My breathing has been affected ever since I was put on Pred - my doctor prescribed an inhaler which used to help - but I now find that my breathing has become noisy, not from my chest, but from the throat where everything is swollen. And I've also started to get small "blood spots" on my face which are so bright, they're difficult to conceal. I keep moisturising but my skin is so tight, is doesn't help.
So, I'm hoping that someone can not only reassure me that it will start to go down but also help me with coping with my poor stretched skin😢
Jan
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Janann25
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Oh Janann I do feel for you what a job lot of intense symptoms. I have never been at your doses but I recognise the symptoms you have in more minor form. The thickened neck, the whistley chest, waking up panicking because I think I can't breathe. Also Rosacea is it called? Broken veins with pimples. I have some on one cheek. You can get a green cream to put under foundation that camouflages redness, I think Boots no 7 might do it. I definitely have a thickened neck and face.
The only comfort I can offer is that you are safeguarding against something much worse i.e. The effects of GCA on the eyes. These symptoms will all decrease as your dose goes down. I'd be at my doctor's door a lot though, you do seem to have got it all extremely!
Ah, bless you - a big dollop is sympathy was just what I needed😉 and also the advice about concealer. Once l've recovered from cutting a lawn - I'm currently collapsed on the sofa with a cup of coffee! - I have to,do some shopping so I'll call into Boots and see what they have. My life before this illness is but a distant dream 💭😟
Er- you have a good reason to NOT cut the lawn! You have a serious systemic illness that requires rest.
Have you been told that cutting carbs drastically really does help reduce the risk of weight gain when on pred? Pred changes how we metabolise carbs, take them out and things are better even if for some people they aren't perfect.
Honestly, I DO know that I have to rest - it was just the very small lawn at the front of my bungalow so it didn't take long. Oh, apart from the fact that I had a chat with almost everyone who walked past - it's the only time I get chance to catch up with the gossip😄 I also know - thanks to this forum, that carbs aren't good so I downloaded "the 8 week blood sugar diet" book by Dr Michael Mosley and have been following that during August. I have to admit that I'm not finding it easy - I normally eat very healthily but since I've been on steroids, my appetite has really changed and I seem to crave the wrong foods now. But I promise, I'm still trying to follow it. So far I've not put weight on in my body, just my face and neck.
I'm just off to have my afternoon siesta now so at least I won't be eating then...............
Oh dear Jan, I think many of us can understand and commiserate.
I too have the Moseley recipes and find there are lots that I really like. My appetite also went haywire when first put on preds. That was only at 15mg, so I can well understand that your side effects may be greater. I'm now (just hovering) on 10mg and have found that the appetite has subsided, my face again looks more like the one I'd lived with all my adult life, and the breathlessness has got a bit less. My neck also thickened and I could tell when I was dozing that I was snoring like a pig. All very attractive, isn't it! But hold on to the fact that it WILL get better.
After 3 and a half years on it through GCA I managed to keep the face down with a very low carb diet. Looked like a rabbit with all the lettuce I ate but worth it. My main problem as always is the bruising if I am collision with anything which is frequent.
I used to get very upset but as one of our friends says,cover it up, if the stuff from Boots doesn't work most have the Department Stores have professional camouflage makeup. If I can't see it it doesn't bother me
I can definitely understand your feelings. I also started at 40mgs, was fine for about 6-10 weeks then oh my, my face became so swollen, and my neck disappeared into about four big chins, my breathing was difficult and I seemed to snore because I now had no neck! I also have some broken veins on my cheeks, which came with the swelling and where my cheeks were so very swollen, deep lines across my top lip.
Hair loss also happened at this high dose and of course weight gain, partly because I had no idea that I would not metabolise white carbs the same as before, and partly, because I did not sleep so nibbled through the night as well.
I moisturised as much as possible ~ hoping to reduce lines once the face reduced its puffiness.
So now onto a positive note - I am now down to 9mgs, (2yrs and 2 months) - my cheeks have definitely reduced, my eyes now look normal not all puffy, but you can still see I am on steroids but I am not as self conscious.
I have one chin again, still bigger than it was pre steroids, but I can wear a necklace now and do not hide behind scarfs all the time.
My hair has thickened again.
My weight was a challenge, it didn't drop off. So I started slimming world, I was actually on this when I was diagnosed, having lost almost a stone. Once on preds, the weight stopped reducing then started to increase even when I was completely keeping to plan. I later realised that is because you can eat pasta, rice, potato etc. on SW -Which I do not seem to be able to do.
So about four months ago I joined SW again, and have to date lost about 1st 5lbs, its been very slow, often only half lb a week, but a loss is a loss. However, my weight has not come off evenly and the stubborn areas steroids holds fat, neck, back and trunk seem to be resistant, but I am confident it will go. I keep to SW plan but do not have any white pasta rice or bread, I don't have cereal. Occasionally a little wholemeal rice or bread.
Saying all of this, I was really really ill over a year ago. It was a much as I could do to manage myself, I would not have been able, mentally to cope with a diet or controlling what I ate. My life had been changed upside down.
I am also able to walk a little more now so that too is helping.
So be kind to yourself, give yourself time to feel better, reduce steroids and then take control of your diet. The sooner you can drop the white carbs the better, and your face will reduce when the steroids do, it seems individual to all of us. I am certainly better under 10 and of what I have read am hopeful that I may have my 'own' face again once I get under 7-7.5.
Thanks so much for the reassurance - just sometimes I wonder "whatever next?" I've not put on weight in my body, just on my face and neck. And of course, that's the one place where you can't hide it!! Sometimes I think, "paperbag over my head" is the only answer...........
Remember, you are beautiful inside and out and people who matter see you that way! Effects of steroids are temporary.
Right now, I am tapering at 23mg steroids with the following side effects: hands and arms with popping veins worse than my 94 yr. old mother's, poor balance, driving only locally because I need a patch, edgier than normal (which is not good) and never knowing when too much activity will bring on discomfort.
We didn't sign up for this condition but it teaches us lessons like humility and patience. Keep us informed of your progress.
Oh, what a lovely reply. Yes, this illness has certainly changed both my way of life and how I respond to events. I lost my lovely husband last year but I know he would be nagging me to take more care of myself - I was his carer for many years and he would keep telling me then I should slow down. Well, I definitely have now !!! 😀
I used to go really fast but not now. I have Pred head so I take my time in order not to lose or forget anything. Yesterday, I went shopping for my 94 yr. old mother who gave me a list that took 3 days to complete! I paid for the mop and left it in the store! Evidence that I moved too fast. Oh well, it's only a mop and next time I'll crawl through my chores!
Let's be thankful we have this forum to share all the things associated with our condition. Every day is a new experience!
Jan, try thinking the puffy face as positive in that wrinkles fill in😁
The rest of symptoms vary from person to person...but all will eventually settle down, and you will look like your pre-pmr self. My weight shift settled around my middle, which i never had before...so each of us has our trial.
Try to be kind to yourself, as you would be with a dear friend...this disorder slams into us with a vengence and taks its sweet time extinguishing. (I am in year 4, with a ways to go.) Things are enormously better than in the early months, and some times I even feel normal😜 . I am grateful to have my vision, and no other serious side effects...so, Life is Good.
Thank you so much - it really helps to know that other people have been there and understand how I feel. It's actually not so much that I'm embarrassed at how I look, it's more that I don't look like ME - I get quite a shock when I catch sight of myself in a mirror. Very weird 😉
I know how you must feel all my weight gain is round my middle and one side of my face, look like a spud misshape with sticks for arms and legs. Was washing my face one day but it didn't feel like my face, bad enough having pred/PMR head without sliding into insanity. Sheffieldjane's badge would be good and one for pred head next to it. I have used Boots concealer it does work but needs a bit of practice. It does get better, there is light at the end of the tunnel even if it does wobble at times. All good wishes.
Since diagnosis and treatment initially with 60 mg.per day of Prednisone for GCA in March, knowing the numerous side effects of Prednisone, already being overweight, I changed entirely what I eat. I eliminated most products with higher sodium, no sugar, no carbs like bread, pasta, potatoes, vegetables or fruits with a high glycemic index, no more fast food at all and no butters. I've lost 30 pounds so far. But, my shape has changed and will. I have the "moon" face now and the persistent abdominal fat.
At the same time I was diagnosed, the symptoms that I had had 4 month earlier of being unable to raise my arms to get out of bed, were diagnosed as PMR. And looking back to 6 months before that my jaw claudication started, but the dentist found nothing wrong. So, GCA really did preceded PMR. Or are they really one in the same now?
I am from the USA so we have different products and measurements. And this diagnosis has entirely changed my life. Just know that you are perfect in the moment you stand in. We have so much support which is tangible. Sending Love and Light
Thank you so much. Yes, I've been trying to follow the 8 Week Blood Sugar Diet - it was recommended on this forum and I downloaded it onto my Kindle. Previous to this illness, I ate very healthily but since starting the Pred, I almost have a craving for carbs. It's almost as if my hand has a life of its own and puts food in my mouth without thinking!!😁 But I'm getting better - it's just VERY hard!!
I am reading a book which includes a chapter on sodium. It seems recent research is now saying that we are overdoing the low sodium diet. Apparently the country with the longest life expectancy is Japan and the country with the highest salt intake is Japan. I think it is probably a mixture of things and not that simplistic but worth a thought.
That maybe so. But, my BP was borderline 13o systolic from being overweight. Prednisone raises your BP. And puts me at risk for glaucoma. My eye doctor told me from the get go on GCA to limit salt. At 1st he checked my eye pressure every 2 weeks. It's remained normal so it's once a month. And my systolic BP is 110-120s.
And here in the USA African Americans are very salt sensitive with regard of BP. High BP is often a silent killer. It damages the arterial blood vessel interior linings. Blood vessels that come from the heart which with every beat has to push against increased resistance. It can lead to kidney disease, heart disease, and stroke. The weakened arteries can start to split on the inside (dissect). We GCA diagnosed are at increased risk of such dissections from the narrowing of the interior of the affected blood vesselsugar from the deposition of these giant cells.
In the book it does mention that some group in the Americas actually has very low sodium intake but also has high mortality. I suppose we need a lot more research.
The most recent "what now" is that salt isn't half as bad as it has been painted with regard to BP! Like almost everything, it depends on the person. Pred doesn't always raise BP, it doesn't always raise occular pressures either. The local eye specialist here told me that if it doesn't start to happen fairly soon, it probably won't. But it should be monitored.
I'm very sceptical about such pronouncements from some US doctors - having to check something every couple of weeks makes them a lot of money...
So true. It all depends on the individual body chemistry. I use salt with no problem. This is going on year number six for steroids and the only eye problem has nothing to do with the steroids. Eye pressure has always been normal.
Hello Janann. I was put on a dose of 60mg and my face ballooned out to the point that my friends did not recognize me in the street. Having reduced the steroids it reduced greatly and now everyone tells me how well I look ( do not feel as good as I look) but my wrinkles have gone and they think I have had botox! So do not worry it will reduce. All the best.
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