STEROIDS - ANOTHER ARTICLE BY DOROTHY BYRNE

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

When I read of the severe problems others have had with severe weight gain I feel almost ashamed to criticize those who at least give us some publicity.

But I don't subscibe to the idea that there is no such thing as bad publicity.

In my opinion anyone reading the Dorothy Byrne articles could well be feeling less than sympathetic to PMR/GCA sufferers She was disparaging in the extreme of young men who came to her aid, describing them as \"yobs\" Now she wants us to sympathise with her \"weight \"problems. What Problems? She looks ok to me and if she's lost a few wrinkles, then celebrate. I think she comes over as a spoilt brat and that is not what most of us are.

Perhaps if the DM would publish this web-site then those who want to have a balanced insight into PMR/GCA would benefit. Meanwhile I, for one, could well do without Dorothy Byrne.

Hi everyone I also got the article in my e.mail. I am a member of PMR&GCA North East Support since last month.

I have the dreaded rounded face although my daughter told me this morning that she thought it had gone down a bit.

I am still on the 12 1/2 meg but have booked my next blood test for next wed.

I have also put on some weight and have decided to go on a diet starting on Monday, Will get lots of veggies etc in on Sat when I go shoping.

I was hoping to go swimming this week but did not think i could lift my arms for that long lol.

Hope you are all doing as well as can be hugs for everyone

Even though I have been on 20mg since the 2nd Feb, still having aches and pains although nothing like the pain before :roll:

Had a dental appt yesterday and struggled the 10 minute drive to the next town ( wrist sore and don't seem to have much of a grip) and then was having a 'drained' day where every foot put in front of another was a huge effort :?

Managed a slow walk from the car park up to the local M&S where I picked up five items..... boy did I have problems carrying that NOT heavy string bag back to the car.... both arms struggled and the pain in the muscles at the tops of both when I changed arms to cope....

Shopping trolley methinks :roll: :roll:

My sister and I fell about laughing at that image yesterday when she called me as she swore she would NEVER be one of those women who pencilled in their eyebrows...... she lost hers during the menopause and now pencils them in :lol: :lol:

I swore I would NEVER use a shopping trolley on wheels...... as our lovely Mum used to say to us both ' Never say never' !!!!

After two gloriously sunny days we have rain........the garden needs it!

Hope everyone is doing well

Hi Fifties Girl

Sorry this 20mg isnt doing the trick for you yet When are you due back at the Drs ??

I have had that exhausted feeling and wanted to climb into my shopping trolley !! There isnt much alternative apart from giving into it and resting as much as possible

Tuesday I had to go to lots of different shops Bank etc and felt i had carried too much and felt I was walking slower and slower With horses if they arent really lame but not doing a full stride they call it \" walking up short \" and thats what I say Im doing when I walk like that !! Yesterday I did my Nordic Walk kept near the back but felt fine but tired after it

I think it is a question of compromise so if you need a shopping trolley thats it ! I have seen some very Jazzy ones slighty different shape to the old ones with lots of bright colours on them being pushed araound one of our local towns by very fit looking types and I think they might be a bit of a fad so you will be OK !

Hope you feel better today

Best wishes

Mrs G

Good morning everyone ! Not so good here!...it's bucketing down...and the grass grows greener and longer,,,, Fifties girl, I am sorry to read thta you had such an awful time of shopping. I have for last two years, done shopping on line. I shop on line, have my own page of usuals, wth pictures,prices,and all details of the item. If I click on the item picture, a screen comes up, with larger picture and description. A list of items on the right, shows as I shop, with the total at top of it. It is all very well designed. At the finish of my shopping, I go to checkout, and follow simple instructions. I choose day and hour of delivery, and if, they are late, I get a £10 voucher !...Also, delivery on tues and wed is £3.50 over £40 ( with prices as they are now, that is surprisingly quick to achieve ! But then, I go into the bargains for the day page, and buy most of the items in there, therefore saving much more than the £3.50 delivery charge !! THEY got me once, to charge full delivery because I spent £39. 60 !....So, I went back and purchased an item for 40p ! :lol: That got them ! Then, if I have any complaint...I go on e.mail to them, and some time to keep me quiet, they put another voucher for £10... 8) I buy bread, milk and veggies/fruit, fresh from a supermarket ten minutes walk from home. For that, I have a small shopping trolley with two wheels. :P I also shop online from the large department store, which deliver prompltly.I even buy my inks online and DVDs Books Electric bulbs...If you click on Google, Amazon, or any of the other manufacturers of anything, even shavers ,etc. it is all delivered.Gardening stuff- DIY....it is all online ! Only trying to help ? :wink: Off to the doctor's this morning. Still pins and needles in my arms. Not too much. When at the hospital, they stuck so many needles in me I felt like a pin cushion :x ...Pins and needles tingling down arms, probably due to my \"boobies\" grown too heavy ? and bras too thin strapped and not able to cope ? ! :oops: thus cutting blood supply to said arms ? :idea: I am going braless for a few days, and see what happens :wink: Any other :idea: :roll: Have a go !

:artist: love. Granny Moss

Granny Moss

I think you arent telling the truth about you age I think you are 37 not 87 !!!! Your computer skills put most of us to shame and you are definately young at heart !!

I hope you feel better soon and I think you should go and have a chat with a Bra fitter Im sure you must have big M&S there and see if they can find you a more comfy option

Its a bit wet and miserable here too but Im off to lunch with some very good friends A rude man once came across and asked us what we found to talk about after we had been there for 3 hours !! So we soon told him to go and find someone to talk too himself not us !!

Best wishes

Mrs G

Shopping Trolley... I'm very pleased with my new \"push\"one. Four wheels, ruby red, breaks and basket. I have to be more careful about using the ramps when crossing the road as it doesn't climb like my old one but it really does take a good deal of the strain when walking. Legs is where I need most help. I'm not too sure if I'd have found it so successful when I had PMR the first time as then the worst pain was in my arms; could hardly plug the kettle in so I do feel for you [color=red:c6bc5d78fd]Fifties Girl[/color:c6bc5d78fd]. If I were you I think I'd want to try before you buy because it does mean that the arms are taking some of the leg strain which might not be too helpful for you at the moment.

I laugh whenever I use the \"feather\" duster my mum gave me years ago. At the time I swore I'd never need it. I have friends who are too \"proud\" to use aids that would help them. Seems silly to me.

Do hope the 20 mg. does the trick soon.

Fingers crossed at the moment here as I reduced to 6 two days ago but I'll go back up again if I have to. Three years now since this episode began. There is huge improvement all round but it does seem a long time.

Mrs G ........not seeing doc for another two weeks BUT am quite happy at the mo even though still have some discomfort ..... but it is not pain so am happy to live with it for the time being and my thinking says it will take longer to get on top of the inflammation because of the huge drop then yo-yo ing prior to being put up there! Well, that is my take on it anyway :lol: Still awaiting rheumy to contact me after doc's phone call :roll: :roll: Obviously NOT on his list of priorities.

Granny Moss: So lovely to see you back to your bubbly self! I do shop online for the main shopping or hubby and I go together and he lifts things into and pushes the trolley, packs, carries, lifts and drives!! I just needed a few things as he is away with work at the mo... so a shock not to be able to carry five light things without trouble :roll: :roll:

Betty E : Like the sound of a colourful, trendy trolley but also think it a good idea to try before I buy! Good Luck with the drop to 6 and hope you remain comfortable

Hi all

I too feel humbled by what so many of you experience - both with discomfort and pain and with weight gain.

I am frustrated as well, Mrs O, as I am finding it SO hard to lose weight. Interesting that you are finding it so hard even on 1mg.

Some of you will think I am obsessed - and I am. I have been on 1200 cals a day for the past several weeks and doing 2 or 3 aerobic sessions a week and a long swim and for the last 2 weeks - NO weight loss!! I am on 2.5mgs and thought I would get away with losing the weight with such a low dose.

The leader of the slimming club I go to has suggested I go to the GP and get a thyroid test and to ask him why this is happening. But I know what the answer will be - that he doesnt know but that it is probably the steroids.

At the moment, I am feeling so ****** minded that I am determined to whip my body into shape and I will not let it or the steroids beat me!!!

Sorry - feeling angry.

:evil:

Beev

Beev

What year did you arrive on Earth please or or alternatively, when where you

:chick:

OK OK I know its not a question I should ask, but some weight gained might not be lost as sometimes, as you mellow into Old Gold, it comes and won't go away. Think of a slim person you know who has a little bump at the front only at the front mind you.

My Mother used to say 'better to widen than wizzen' and as kids we loved to cuddle our buxom Aunt, the skinny one - no chance.

One consolation for me has been - my two wee friends who always say, we love getting a cuddle or hugs from you - its different and so nice. There parents and grand parents are slim.

Dear Mrs K ! What are you doing, being up at such a time :roll: All good girls are supposed to be in bed, by then..... :wink: I do hope so much that you managed to have some good sleep ! I know what it is like to have night after night, waking up two or three times...In the end, I did not bother to go back to bed..Made myself confortable on settee and watched all night TV...Quite a revelation...some of the channels ! :oops: :oops: :oops: Specially \"BABE \"........ :roll:

Putting on weight...My husband says I am CUDDLY !... 8) and I have cut down on too many biscuits... for now ! The thing that I have to keep an eye on...it's my \"mustaches\".....because I do not want to embarrass anyone....I thought I could wear a sheet over my head, with two holes cut in it, at eye level....but I am worried that they would put me away :P

Dear EileenH, by chance I think I found out the cause of my pins and needles down my arm ? I had severe pain on the left of my neck, which caused awful very painful cramp ! :cry: This morning, I streched my neck to the right, and the pins and needle sensation disappeared instantly.! :?Is back, but not too bad. Do you think I should go to a Physeo ? My GP did not seem to interested. So I left it at that, and hope it will resolve itself? Must go and have my breakfast now, and all those pills to swallow :roll: :roll: We have been promised sunshine here !....I will go out and grab some VIT D......love to all. Granny Moss