Vasculitis UK
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Welcome New Members

I have noticed a number of 'Posts', from New People, recently. I have contacted, one or two, but think that we should give all these, probably unsure/confused/nervous/maybe even frightened people a Very Warm Welcome! Please do Feel Free to ask us anything, even if it sounds 'Silly'-many times it's not- honestly, we don't Bite!

Look forward to hearing from you.

Warmest Wishes.

AndrewT

7 Replies
oldestnewest

Andrew, some of us have been on this site for years and have done so for years, but as the thread has grown expotentially, more people familiar with the internet now, and age range of patients dropping we don't always know who is new or not.

One or two things would help when posting.

What you have, date diagnosed, what mg takes, what on now and where you are located, ie UK, USA or any other place.

There are also useful links in the pinned posts and on the first page of PMR&GCA.

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I am happy to 'Talk' to Older Members jinasc and, I assure you, that I meant no offence. However, as you rightly point out, this 'Forum' is growing....So my comments were intended as a Welcome, to our newer members.

Yes 'Pinned' Posts are helpful, as are, some of the Older posts. ( I wrote one concerning Constipation, more or less, at the same time as someone else, wrote one on Digestion generally.)

So NO I did not/do not mean to Side Line/Alienate 'Older' members-like Myself and I'm sorry if it Sounded like I was.

Have a Happy Christmas, and a Merry New Year.

AndrewT

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Hi my husband has been recently diagnosed in July 17 with granulomatous polyangitis. He presented with pneumonia like symptoms and was thankfully quickly diagnosed after the appearance of a rash and ulcers over his legs. He has been treated with 5 cycles of cyclophosphamide , last one booked for next week. He is on a reducing prednisolone initially 60mgs now 12.5 . He is also on alendronic acid, omelrZole, co trimoxazole and cal c d . I have found this site very informative and respectful of others. I have rung the help line twice once following initial diagnosis when I was in shock, scared and very emotional and the second time for reassurance/advice from someone who has knowledge etc. I would not have been able to cope without this site so thank you all. I am still anxious re the future but know there is always someone available who I can talk to.

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Dear Main1234,

Please DO Feel Free, to contact us, and I know that we will all try to help. We are not however Professionals, just people who are in, much the same, 'Boat'.

Please pass our Very Best Wishes to all your family, our prayers ARE with your Husband.

Have a peaceful Christmas.

AndrewT

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Hi Andrew,

my son is 12 years old and he has been recently diagnosed in March 17 with MPA with a severe kidney disease at first. Now he's doing well but I'm worried for everything and for his kidnyes outcome. When I read that you have been coping with this ill for more than 20 years I feel better because, to be perfectly honest, in same moment we thought we would lose him. I would like to know, also in private if you prefer and if you have time, why at the end you have to have a transplant and your therapy, how was and is your life. I'm going to help him in every way...

thank you in advance

have a good day

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I WOULD be happy to 'Talk', to you Wizzi, Yes I had a Kidney transplant-in July 2013-following four years of Dialysis. I actually first fell ill, in 1995, and was given a hour to live-at least that's what my Mother was told.

I have had to 'Give Up' work, mainly as a result of Brain Damage (all part of my condition, unfortunately) and live in Supported Accommodation. I have my own flat, do my own cooking, cleaning (bare in mind that I'm a Man, here) and Personal Care. I attend Headway- a Brain Injury Support Charity-twice a week and spend most of my Sundays at my Mother's. (We both go to her local Church, since I know 'everyone' so well) I try to go to the local Leisure Centre, once a week, in fact one of my neighbours joins me (or me him).

I regularly attend The Ipswich Hospital, I'm under Dr Andi, who is well aware of my Condition. Additionally I am under Dr David Jane's team, at Addenbrooke's Hospital Cambridge. (Dr Jane is a Consultant to Vasculitis UK, our 'Sister' organisation.) On top of all this (???) I am regularly Checked For my Eyes, teeth- I have three appointments Before Christmas-skin, I'm seeing 'Them' next week....and so forth. As you can see, quite a 'Bit'.

I am, as you have probably 'Gathered', happy to discuss, these Things, on this Forum. Clearly, if there IS anything, more Personal, that you wish (only) me to know, then we CAN arrange a more Private link.

Please DO feel free to contact me, indeed any of us, further Wizzi.

In the mean time, DO take care (as far as possible) and, if we don't 'Talk' before, have a very Merry Christmas.

AndrewT

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This site and all its members were a great discovery for me especially at the beginning of my son's illness when I felt very lonely and sad .. desperate I would say. Now it goes a little better, but fear is always plenty and questions as well. I thank you very much and certainly I'll write in private for some clarification

thank you so much

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