steroid side effects following vasculitis

loobie

Hi everyone,
it is a long time since i was here and i am glad to be back. had a tough time lately after being admitted to hosp. to 3 weeks with vasculitis which is apparently uncommon now if you have r.a. It is an awful condition and creates all sorts of other problems like kidney problems. I have to go back into hosp next week for a kidney biopsy as they have not been working properly since the vasculits. Anyway, what i really need some help on is the side effects of the steroids the rheumy docs and kidney docs put meon. I started at 35mg reducing 5mg monthly and am now at 15mg daily. I have put on 3 stones in weight, have a huge fat face, a great big neck and feel like a total freak. I am fast becoming a recluse as i am so embarresed by my appearance. Can anyone tell me how long i am going to look like this.
Sorry to be such a moan, i feel no one understands (esp the docs) how miserable looking like this makes me feel.
thanks for listening.

dreamdaisy

It's a common side effect of the steroids I'm afraid. I too am on 15mg per day, I've put on weight, my face is fatter, but overall I don't care anymore. I can't function without the steroids, I was never a raving beauty to start with, I am beyond worrying about it.

You have been thro the mill, haven't you? I don't have RA, I've never heard of vasculitis but it does sound awful. Once they have sorted that out, hopefully you can begin to reduce the steroid dosage, gradually, and then hopefully everything that is worrying you will also begin to resolve. The weight can be addressed, the 'moon face' does go, but whether one has to be off steroids completely for that to happen I don't know. I wish you well. DD

loobie

dreamdaisy wrote:

It's a common side effect of the steroids I'm afraid. I too am on 15mg per day, I've put on weight, my face is fatter, but overall I don't care anymore. I can't function without the steroids, I was never a raving beauty to start with, I am beyond worrying about it.

You have been thro the mill, haven't you? I don't have RA, I've never heard of vasculitis but it does sound awful. Once they have sorted that out, hopefully you can begin to reduce the steroid dosage, gradually, and then hopefully everything that is worrying you will also begin to resolve. The weight can be addressed, the 'moon face' does go, but whether one has to be off steroids completely for that to happen I don't know. I wish you well. DD

Thank you for your well wishes and the info that the moon face does go.

skezier

Oh Loobie you have been through the mill flower.

I had a similar reaction to preds when I was on them only i was lucky and had just lost a lot of weight so arguably the weight gain was a good thing in my case.

I wasn't on them long, 3 months I think it was and the neck and face went back to normal but I don't know it it stabilizes and goes back when you are on them I am afraid.

I am old, fat and ugly. I really am looking 10-12 years older than I am and understand totally what you say about embossed by your look BUT Loobie you mustn't be! Inside you are still you, a valuable and nice person. Only shallow people see people for how they look! For me I avoid mirrors and make my self go out and meet the world but deep down if I never went through the gate I would be happier..... You can't let it win and I so hope the illness side of things sorts out for you soon.

Sending a ((((( ))))) and a wish we could get hold of a magic mirror! Cris x

dreamdaisy

Yup, moonface goes. My mother's neighbour was on high doses of steroids to sort out some problem or another - I cannot remember what now. She went really round in the face, but the steroids did the trick and she is now off them. Her face has returned to its normal proportions. Ain't she the lucky one? Life without steroids. I am jealous! DD

marion1952

Hello Loobie

Sorry to hear that you have been through the mill over the last few months. I know very little about vasculitis , but I do know many people who have been on steroids and when they stopped them the 'moon face' and the excess weight disappeared.

Please let us know how you get on with the kidney biopsy.

Best wishes

Marion

marion1952

Hello Loobie

Sorry to hear that you have been through the mill over the last few months. I know very little about vasculitis , but I do know many people who have been on steroids and when they stopped them the 'moon face' and the excess weight disappeared.

Please let us know how you get on with the kidney biopsy.

Best wishes

Marion

annie_mial

Hi Looby.........I've been on steroids for almost 9 years now in varying doses and yes, the side effects do disappear as the dose reduces. I have PMR and GCA.

My weight has been up and down like a yo-yo and sadly for me I put it all on round the middle..........I end up looking like a barrel on matchsticks.

But during all this I kept working as much as possible...I was eventually able to work on the basis that if people didn't like what I looked like, they had the problem, not me. However, in the early years it certainly caused some tears and sleepless nights and it knocks your self confidence into very small pieces. I did stick it out very successfully but finally retired in March this year.

Do anything you can think of that will boost you.......I paid out for a top stylist to cut my hair (which is very thick and unmanageable) into a lovely shape once I realised this was the way to go. If the funds will run to it, have a facial or even just a sauna to help out, a pedicure, manicure, whatever makes you feel better. New handbag, shoes, clothes, whatever.............in my case, often a new book to read! It doesn't have to be pricey these days, I looked for special offers in my area, trawled charity shops and car boot sales!

Hope this helps, if you would like to PM please do.

Annie xx

loobie

I was so glad to hear from you all. you forget how isolating this disease is never mind the treatment for it. it was reassuring to hear from all of you that the moony face goes and as for the big middle bit of me - the last time i looked like that i gave birth 2 days later. i know in the grand scheme of things i shouldn't be caring about external looks when there is life threatening things going on inside but i cant help it and it is sooooo pathetic even i am sick of my atitude.
Just have to get through the scary kidney biopsy on wednesday and that will effectively take my mind off the silly stuff. here's hoping i can be a bit braver about this.
once again thanks for all advice, it good to know i am not alone in this after all
loobie xxx

dreamdaisy

It's anything but pathetic. This disease wears away at one, grinding one down bit by little bit, so that EVERYTHING becomes a big thing and one cannot distinguish between the stuff that is worth bothering about and the stuff that isn't. You are coping with a great deal, don't forget that. Come and tell us how you feel and we will do our best to reassure and encourage you. DD

loobie

oh you lot are the best. One more day to go before biopsy day when that will concentrate the mind on what is real and what is just appearance. i will be in hospital for a minimum 3 days so if i go off forum for a wee while it will just be because of that because now i have found you all again i intend to "use you" in the nicest possible way. i do hope that is going to be taken in the right way as it is meant as a thank-you for finding me again.
Thank-you all, i will keep you up to date when the docs finish putting holes in me.
loobie xx

dreamdaisy

We're here to be used! We will be thinking of you and please, get back to us as soon as you can and give us an update. Have I got it right in saying you are going in tomorrow? So hopefully out at the week-end? DD

loobie

Hi DD
yes you have it right, i go in to hospital tomorrow and get the kidney biopsy on Thursday. If everything goes allright and my R.A. does not flare up then i should get home on late Friday. Thanks again for the support, you have no idea how much i am appreciating it at the moment.
loobiexxx

marion1952

All the best for tomorrow Loobie .. let us know how you get on

Marion x

dreamdaisy

Ok hun, duly noted. I'll post here on Friday, just to let you know you are remembered! Good luck, I will be thinking of you. I am sure it will all go fine. DD

trisher

Hi

Hope all goes well for you. Will keep my fingers crosses for you.

I have just started my second dose of Steroids as every arthur drug for my RA I'm having bad reactions.

A few months ago I was told I have Rheumatoid Vasulitis

At the moment I'm bouncing off the walls . I cannot sleep, just gone through 48 hours with no sleep at all.

I have been warned I will get a moon face I have not bothered yet to see if it is happening.

He also said I would put on weight. You are not alone, come back to us and we can all try to help each other through this.

Good Luck again though

Love Trish xxx

dreamdaisy

Morning loobie, just popping in to wish you well today. It's never nice going into hospital, is it? They are too hot, too noisy, with foul food and grotty tea. They are, however, a necessity. Let's hope it all goes well and smoothly. Thinking of you. DD

dreamdaisy

OK, today's the day for your kidney biopsy: I hope it goes smoothly and you are not too sore after! DD

marion1952

Hi Loobie

Hope everything went OK. How are you?

When will you know the results?


Marion x

dreamdaisy

Hopefully you will be on your way home today! My fingers are crossed and I hope you are feeling alright and not too sore. DD