Hello everyone
Thought you may be interested in reading Dorothy Byrne's article on steroids in the Good Health pages of today's Daily Mail - someone who so shares our sentiments through her own personal experience with PMR and steroids. That's two weeks running now that the Mail has contained articles on PMR - well overdue publicity and let's hope for more of it! :D
Glorious sunshine here today and do hope everyone is getting a share of it! 8)
Have a good day everyone.
MrsO
rs O. I found Doroty Byrne article in my e.mail. I am a member of PMR&GCA North East Support, and I will get all recent information, etc on my e.mail. But one can go on Google and click Daily mail and read all the latest news there. Photos and everything . Hope this is of some help ? :?: Granny Moss.
Hello Granny Moss
I'm glad you've been able to read the whole article and hope it helped you - although we don't wish to hear of anyone else suffering it is comforting especially for new sufferers to read such articles and know that what they are experiencing on steroids is 'normal'!!!!! :roll: An article by Dorothy Byrne did appear in the Mail about a year ago describing her dramatic experiences before being finally diagnosed with PMR.
Do hope you are feeling a little better now that you have rested but as Eileen has already said, don't ignore the headache - I have GCA and know how serious it can be....some brave people attempt to cope with PMR without steroids but GCA is another story and requires very high dose steroids to prevent possible loss of eyesight.
The Thorn Birds....did you see the televised version years ago :?: I absolutely loved it and knew I would have read the book previously.
Take care,
MrsO
I logged online to the DM to read it a little while ago after reading the post here :roll: :roll:
Just confirmed what I had already been told to expect....... not looking forward to the round face but will live with it as have never been wrapped up in 'my looks' anyway and if being on steroids gives me a quality of life I would not have otherwise, bring them on :lol:
Granny Moss.....do so hope you are feeling a little better this evening.... was sorry to read you feel unwell 
Hello again fifties girl
I havent gained a hamster face since I took steroids I have a roundish face anyway and though I have put on weight generally nothing noticable on my face
My sister in law who is very thin did She was given 60mg of steroids for a different illness altogether and got her moon face quite quickly This was over 8 years ago and though she is on I think 7mg now her face went back to normal quite quickly
I am with you I would rather take the steroids than cry with pain trying to get out of bed in the mornings or perhaps end up bedridden because of it
I suppose because there are as Mrs K says 82 side effects Drs cant tell us everything and what is more important High blood pressure, diabetes,high cholestral ,glaucaoma or putting on half a stone so Im afraid I think she is being a bit OTT !!
I am sure that when I come of the steroids the weight will go and definately the quality of my day to day life is more important so I have just bought bigger clothes !!
best wishes
Mrs G
In case someone couldn't find the article in the Daily Mail, I copied and pasted it below -
Steroids save lives but we have to
face-up to their side-effects. By Dorthy Byrne
A woman I barely know leans across the dinner table and strokes my cheek. ‘No wrinkles at all!’ she says enviously. ‘How do you do it?’
It’s a compliment I have grown used to in recent months. Despite being in my 50s, my skin is as smooth as a toddler’s bottom. But my secret is not Botox. ‘Steroids,’ I reply. ‘15 mg a day.’
I am one of the quarter of a million Britons who take steroids long-term. They are corticosteroids, which are not the same as the anabolic steroids taken by bodybuilders.
Wrinkle-free: Dorothy Byrne, Head of Channel 4 news, hates that being on steroids has given her a 'hamster face'
In my case, steroids control the painful symptoms of a temporary auto-immune condition called polymyalgia rheumatica (PMR). Others take steroids for inflammatory conditions such as Crohn’s disease, chronic asthma, chronic obstructive pulmonary disease, ulcerative colitis and rheumatoid arthritis.
Steroids truly are wonder drugs — life-savers in some cases — that for decades have been relied on for their ability to reduce inflammation.
But they have some unpleasant effects on physical appearance that patients are often embarrassed to talk about. It is time for us to come out.
As head of news and current affairs at Channel 4, I am meant to talk about subjects others find difficult to discuss. How strange that one of those subjects should be my own body.
As you can imagine, drugs with so much power have side-effects when taken long-term — prednisolone, the most commonly taken long-term steroid, can cause osteoporosis after just a few months.
But the potential medical consequences hardly bother me on a day-to-day basis. What makes me miserable is the way steroids make me look. That smooth skin comes at a price — we steroid-takers call it the hamster face.
‘You could buy yourself a little wheel to spin round on, Mum,’ said my teenage daughter Hettie.
She did tell me I was still her beautiful mother ‘underneath’. At least she was honest. Many people have told me I look just the same — does this mean I’ve always looked like a hamster?
Doctors call our chubby chops ‘moon face’. It’s caused partly by water retention, but also by the peculiar way in which steroids redistribute fat round the body.
We also have little humps on our backs just below the neck, known as ‘buffalo hump’. There is another weird fat deposit round our midriff. Meanwhile, our arms and legs lose muscle and fat. Some medics refer to us as ‘lemons on matchsticks’. Others call us ‘potatoes on sticks’. Obviously, they don’t say these names to our puffy faces.
Doctors are, of course, mainly concerned with the long-term medical benefits of taking steroids and so often don’t mention temporary changes in appearance to patients. I’ve interviewed several people who didn’t know until I told them that the weird fat deposit round their torso was caused by steroids.
Similarly a lot of doctors don’t, or hardly ever, mention the possibility that you’ll put on weight. In fact, someone on long-term steroids for PMR might expect to put on half a stone.
The higher the dose and the longer you are on steroids, the more weight you are likely to put on. This is because steroids make you feel hungry, affecting the areas in the brain that control feelings of hunger and satiety.
A study of PMR patients found more than two-fifths put on significant weight. Several people I know on steroids complain of weight gain of a stone or a stone and a half. I’ve heard of one woman who put on five stone.
My consultant did warn me about weight gain and advised me to surround myself with oranges (rather than crisps or chocolate).
Thank God she did. I quite often sit down and eat five
Judging by the before and after photos, what Ms Byrne is complaining about is NOT the \"moon face\" of steroids - what she has is just the chubbiness of putting on weight generally. The \"moon face\" was illustrated perfectly on Sky News this morning by a lady who is on high dose steroids for something really horrid - it looks like a swim ring sited where your double chin would be, running up just in front of your ears and the impression created is of a full moon. When you have seen it you will know exactly what I mean - chubby cheeks just isn't the same. It's a bit like comparing a bad cold with proper, good-going flu. I'll look for an internet piccy.
The \"moon face\" really is only found in patients who need very high doses over a long period (40mg plus) - unless you are very unlucky. Ms Byrne mentions she has been on 15mg for a while and her rheumy doesn't appear too concerned. Quality of life is the name of the game - you might not get osteoporosis if you are on a low dose but you will probably not be able to move enough to break much - or you will be so immobile that you fall over when you try to stand up and break your wrist!
Good evening from a far too sunny and warm northern Italy - they tell us this is April weather so, given that Candelmas Day was \"bright and fair\", I'm a bit concerned what might appear in April!
EileenH
Hi Eileen and all....I am with you there....I read the article and saw the photos and thought....what is this woman's problem. :? ...she looked perfectly fine to me :roll:
I am lucky, in that I have never developed the \"moon\" face, but have filled out enough that the \"lines\" are smoother :wink:
I think that in some ways the article was quite negative.....she seems more concerned with her appearance than with the relief of symptoms that WE all know the steroids provide.....and how can anyone cope with the day to day limitations of PMR if they are more concerned about what other people think of their face shape :?: .....personally I could not give a monkeys what other's think as long as I am comfortable 
I do realize that for some it is an esteem thing.....but for me, being comfortable and pain free is the number one priority....and although I haven't put on weight yet, it really would not bother me if I did, so long as I had no pain and was able to function with a degree of normality
But then.......I Don't have a high profile job in the media :oops:
Hope everyone has a good nights sleep and I don't see anyone logged on in the \"wee\" hours.
Love to all, Pauline.
I fell about laughing at her picture.
I am now bragging. I developed the full moon face - just like Eileen described. Remember I started on 60mg (Feb 2007) and within 6 weeks it started to develop - when I was dropping down it started to sort of disappear. The relapse and back up to 60mg. Six chins, side burns that were flesh and to cap it all whiskers (OK they call it peach fuzz).
But you know what - I did not care one jot - I kept my sight. Jan 2008 - moon face disappeared, I am down to 15mg and peach fuzz disappeared. Yippee.
Second replapse up to 40mg - back with moonface, but no peach fuzz. Quickly down to 20mg this time and within 5 weeks moon face gone.
And is has stayed away.
Yes I put weight on (far too much) and have had battles with ignorant junior Doctors who think they know it all. But my favourite two Rheumy's said it will go away, slowly as you come down with the steroid dose. Helen the dietician said - just don't overeat - craving somthing - drink a glass of water with a drop of lemon or lime and eat a baby tomato or piece of carrot or a bit of celery and cucumber. Cucumber is great.
The weight is coming off slowly - but I don't think I will ever get back to the size I started out at. Do I care - no.
I am behind my face and don't have to look at it. If other's do not like what they see - its their loss, not mine. I am me, warts and all.
Take it or leave it. I don't have time to bother with them, life is too short and as I have said before 'It ain't no rehearsal'
Starting at 40mg I too developed a moonish-shaped face and gained half a stone BUT I was no longer confined to my bed and eventually could manage the stairs again - thank Heavens for steroids whatever their side effects and I'm sure Dorothy Byrne, if she looked back on her pre-diagnosis days as published last year, then she, too, would be ready to accept what little side effects she has rather than have no quality of life.
MrsO
How I agree with everything said!
Several people have suggested keeping a sort of PMR diary, and lately somebody, was it Mrs G (?), has highlighted how much better they feel than a year ago. I could say exactly the same thing, walking further, doing more, feeling better generally, although still on 7/6.5 pred. :D :D
What I wonder is whether this is due to me \"managing\" my life better, not doing too much one day, learning how to reduce the steroids slowly etc. etc. Or does PMR gradually improve, the inflammation gradually diminish - or does it just up and go one fine day, but we don't always know when because we are hooked on steroids?
Does that make sense?
Re moon face, or whatever the hamster cheeks should be called, I've still got 2 chins but I think that's advancing years And maybe I blame too much weight gain onto steroids rather than that it was happening anyway.
I'm going to call it being cuddly :D
Green Granny
[quote:1d8e10af3a=\"Green Granny\"]How I agree with everything said!
Several people have suggested keeping a sort of PMR diary
cuddly :D
Green Granny
Green Granny, the same as you, I too agree with all said, and I too am keeping a PMR diary. I had two diaries given to me as presents at Christmas, so for the second one, using it a PMR log is an good idea for it's use. I am keeping a daily log on my pain levels, mood, tireness, BP levels etc, etc. And of course the amounts of Pred I am taking.
As far as the press articles are concerned. This kind of exposure is just what we need. The more media exposure to this dibilitating condition the better. More people need to know!
Gilly.
Hello all
Well i think we all agree on her article !! I think she is a producer not in the public eye exactly so why the fuss !!
She should read her own article for last year where if I remember she lay on the floor outside a station waiting for a taxi !!!!!!!!!!!!!!
It was a very negative article about steroids I understand the people who are nervous about taking them who have other illnesses and take other medication I didnt want antibiotics for my throat or to have to take medication for BP b in case it upset the PMR treatment but not because of puffy cheeks !!!!! I was pleased last year when she highlighted PMR but this one could put some people off steroids What does she think people who have to have chemo go through !!
I am so much better ( fingers crossed ) than 12 months ago ( off nordic walking again today ) Last year getting up dressed and getting to the computer would have taken all my energy for a few hours
I hope I dont have to increase the steroids again but not because of my appearance but because of it means PMR will be limiting what I can do more again
Silly Woman !!
Best wishes
Mrs G
I love my steroids! :ok: :D
Mrs.G
Absolutely agree and self obsessed with it.
Her ears should be burning.
There surely has to be two sides to this; those of you posting here don't seem to have had the dramatic weight gain I suffered and which downed me to the point of depression. Going from 7.5 stone to 10.5 stone and finally 11, was absolutely no joke and that happened within 3 months of starting steroids (at 30mg for a short time). For someone who had never, ever had a weight issue previously it was devastating.
Did it upset me? You bet! Did I cry? Again, you bet! Every day for months. Was I angry? I was bloody furious and still am if I let myself think about it. Given that I was eating no more than usual, although I was relatively pain free, the additional weight meant I still moved like a snail and being unable to get back to even part of the exercise I was doing pre-PMR was doubly frustrating.
I agree with the woman who said that she hated going to the hairdressers; I refused to look in a mirror of any kind for months on end and to catch sight of myself unexpectedly meant more tears. I looked like the Michelin man on matchsticks - oh, I'm barely five feet tall and 7.5 stone was always my natural weight.
What made it worse was that everytime I seemed to be getting somewhere with the pred reduction, something else would happen and I would have to up it again - this went on for years.
I wish now heartily that I had tried other remedies before going down the pred route, but then it was still very much a 'you take this, no questions' situation with the medics. Finding information about either PMR or steroids was impossible (I found a few American sites which were less than helpful).
I suppose over the last few years as other things have happened along that I have become resigned to it all, but I will never underestimate the issue that these side-effects can cause.
Nefret
Dear Nefret,
You are not alone !
I have also gained at least three stone in weight since starting the preds. I stopped getting on the scales a long time ago. I have resigned myself to the fact that for the time being at least, I will be wearing what I once thought of as tents. :x
Over Christmas and the new year, I was very depressed, to the point of crying almost non-stop, I think the time of year had something to do with it, but like you, wonder who it is looking back at me from the mirror.
Luckily my hairdresser is very understanding, I have been going to her for years so she knows me well, and makes lots of conversation so I don't think so much about what I'm looking at ! 8)
My husband tells me I'm still the same person inside, as does everyone else, but it doesn't seem to help much, and I wouldn't have called myself vain, just like to make the best of myself. That's very difficult now when I feel such a blob.
Then I have the days that remind me of how I felt pre-steroids.
Would I have been able to cope without them ?, I doubt that very much.
I'm feeling more optimistic in the last few days, perhaps it's the few rays of sunshine we've had, 8) but now I'm hoping that I'll be a bit more mobile than of late, and some of this weight will shift.
If I had only put on the weight that Ms Byrne had, then I don't think I would be moaning. Takes all sorts though !
So glad we have this to vent our feelings and find that we're not the 'only one'
Virtual hugs to all, and hope you are experiencing some of the lovely sunshine we have here in Shropshire today :hug:
DD
Nefret
I know what you have gone through these past few years and you have always had my sympathy and reading your story over these years, I have been grateful that I had GCA and so far have escaped PMR.
But I was one of those who gained weight.
Height 5' 9\"
Normal weight 11 and a half stone
Weight (after major foot operation and six months not able to walk and then another six months getting slowly back to walking) 16 stone.
Weight loss within three months 3 stone so down to 13 stone and determined to reach my 'normal' weight'.
But then GCA struck and steroids - massive doses - and now aged 68 so weight gain within 6 months up to 21 stone was probably partially steroids, partially unable to exercise and also aging. I also came from a fairly cuddly family - that is 'no stick insects'.
In wheelchair as unbearable back pain could not walk more than two car lengths.
3 years later - weight loss 1 stone - able to walk two supermarket alleys. And with various other things going wrong - long slow job.
Did it all upset me - you bet it did, but I came to terms with it. Without the Pred I would have lost my sight.
Yes Nefret, there were no alternatives and there still are no alternatives, as there is still no known cause or cure. PMR and GCA are one of 800 orphan diseases many of them auto-immune.
As it is affecting more and more people, at last they are putting more effort into research into cause and for much friendlier medication. Currently trials are being held on a couple of drugs. But this all takes time and money.
They know there are 82 side effects to steroids, luckily we don't all get them all and some of them are very rare.
I shudder to think where PMR, GCA and other auto-immune diseases would be without steroids. I know where I would be - blind.
Yes, Methotextrate came along, but it has side effects as well, and Metho is not considered until you are on 10mg and below.
Yes, there are two sides to every story and I would have loved it if Ms Byrne had given the other side and the need for research into cause and cure.
Some of us did and we set off to start up a National Charity and as you know we succeeded. I just wish Ms Byrne would mention it sometime.
There is always a positive as well as a negative and I like to end up on a positive. We will get there, not in my lifetime but we will beat this in the future.
Good Luck and I hope your journey becomes easier.
Mrs K
I feel very humble listenning to all you have been through
There isnt an alternative to steroids at the moment and I like DD have put on about 3 stone and I honestly wouldnt say I had really eaten more than usual but my activity levels are so much less nowadays and when I had my blip at the beginning of last year my weight did go up very quickly as rather than just inactive I was almost horizontal !!
Steroids have made my life bearable I think my husband is very
understanding of my illness as he doesent forget how I used to cry with pain with my first bout of PMR before I had the steroids
Nefrett
We arent trying to undermine the effect steroids can have on someone but the lady in question has only put on 7lbs !! I know a lot of people who will put that on on holiday or over Christmas For you this weight gain must have been terrible as you were only very tiny to start with I am only short but have had weight battles in the past so for me it wasnt the first time I had put on weight but when my 2nd bout of PMR hit I was spot on with my BMI when the Dr checked me and had a very LARGE wardrobe of size 10 clothes So for now I have put them away I am fussy about my appearance always love clothes have my hair done reg etc but at the moment I am just buying the minimum until this weight goes away
Steroids are used for lots of illnesses I know and there doesnt seem to be anything better but even if there were they would possible have side effects anyway My sister in law was taken ill at exactly the same time as me with my first bout of PMR with a very rare illness attacking her muscles which made them weak not painful and had to have a cardiologist to her in the middle of the night as your heart is a muscle as well and if she hadnt had 60mg of steroids to stop the attack she would have died A few people I know who have taken methatrixate have had liver problems so nothing is easy Im afraid
I hope you are feeling better now
Best wishes
Mrs G
Nefret
Although, as you already know, I didn't have such a weight problem with the steroids as you and DD have sadly suffered even my half a stone extra is proving impossible to shift in spite of having been on only 1mg for so many months and yes I am finding that very frustrating so I can definitely understand how those of you who have gained a few stone must feel. You would think that half a stone would be so easy to shift but if I have so much as a desert on any one day that will show an instant increase and I'm fighting a constant battle to not gain any more. I know, like me, you have other health issues to deal with let alone the steroid side effects and these issues add to the frustration as weight gain doesn't help those either.
Like you, when first diagnosed with something I'd never heard of, there was no-one to turn to for information until one day I opened up a Women's magazine and saw an article by a lady in Suffolk who was running a PMR/GCA support group. She pointed me in the direction of this fantastic forum where I then found PMR Fighters - my depression immediately lifted...I was no longer alone!
You have shown that, yes, there are two sides to every story and I, for one, am grateful that at least Dorothy Byrne has again given PMR some much needed national coverage even if to some it does fall a bit short - any coverage is better than none.
Hope those walks by the sea from your new home are really lifting your spirits...continuing good luck with the reductions!
MrsO