Thank you everyone .......

[Sima1952]

Hi everyone,

I just want to say a big thank you to everyone for their advice and help when I have put questions on Health Unlocked in the last six months, in no particular order a personal thanks to:

John & Susan Mills

AndrewT

overnighthearingloss

RichardE

Ayla

suffolkgirl

Howget

tintinrob

prudence

The reason behind this is that my Consultants, after a vast array of tests have decided I don’t have Vasculitis, although they don’t actually know what is wrong with me and have a working diagnosis of possible posterior ciliary occlusion (eye) plus I'm still having ear pain! I shall keep in touch as I am still trying to reduce the steroids and have a feeling this is going to take a long time,on this site everyone has their own theories on reducing these lovely pills; as I'm finding out that whenever I go below 9mgs per day - I did get down to 8mg for a few days - the ear pain comes back with a vengeance plus I’ve had to increase the Amitriptyline to 30mg per day.

Finally, a quick word about easysearch.org.uk and easyfundraising.org.uk , these two sites support various charities including Vasculitis UK. You will have to register of course and mention which charity you wish to support - Vasculitis UK of course - then every time you use the search engine it donates towards Vas UK plus if you regularly shop on line with Amazon, E-bay even Ancestry.co.uk, and register on the other website an even larger amount will be donated to Vasculitis UK.

Keep as well as you can all of you.

Sally x

[AndrewT]

Dear Sally,

Thanks for your thanks- that doesn't make much sense does it? Please do keep in touch with this site, will you, and let us know how you get on, will you?

Reducing steroids is a tricky one, I cannot reduce the Prednisolone below six milligrams without ill effect; I think, after sixteen years, this is likely to remain the case! I don't know what tablet strengths you have, there are several available, but you may be able to reduce the amount taken, very slowly, over time. Anyway good luck, glad that you don't have vasculitis.

Best wishes

AndrewT

[Sima1952 in reply to AndrewT]

Thank you Andrew and Harold, I will keep in touch with the site as the people I have been in contact with have/are great.

I have a feeling that the steroids are not going to be as easy to come off of as my consultant thinks; I sent her an e-mail the other day about a couple of things but she is on holiday for two weeks, she had said only keep to the 10mgs for a week but I will probably do them for two weeks and call her when she gets back, that is unless one of the other doctors in the clinic contact me as Sue Reid (Medical Sec) said she would pass my e-mail on.

Sally

[Harold]

Lowering med is a very hard thing,done that got the t shirt.

I got down to 5mg prednisolone and was like hitting a brick wall, my world my turned upside down and took quite some time to get back to my good old self.

But as doctor told me one time it's got to be done as the prednisolone will end up doing damage to other part of the body, so dammed if you don't and dammed if you do.

Just take it as it goes and now take 10mg. Everyday and told I stay on that.

But still have good days and bad days don't we all.

Humour is what keeps people going,you have to be able to laugh or you would go stir crazy.

[AndrewT]

Dear Sima,

As I said before, good luck and please keep us 'posted'.

AndrewT

[Sima1952 in reply to AndrewT]

Will do, all the best.

Sally