Hi! Guys

[Barbara N]

You sound great and like a very strong person. It is good you finally took over your treatment. I have a much smaller but similar story my hands look like I put them in boiling oil and are so painful. I was prescribed antibiotics and some very expensive hand cream. They kept getting worse but each doctor did more or less the same so I made a private appt. with a doctor who believes in me and also who discovered that I had WG and he said no cream will get rid of that you have to back on Pred, so I did event though I hate it and now they a starting top improve. It just shows with this disease you have to take control yourself and if you don't agree with the doctor get another one until you find one you like. Good for you coming back to a better life. I am sorry you had to go through so much at the hands of incompetents.

[Reetsky]

Hi Barbara, nice to meet you. You would think that by now clinicians would be more clued up on this illness. There are a few sites on the Internet where you can get information but in my case my Consultants have told me they don't know what affect the prescribed meds are doing to my system. All they are doing is trying to dampen down the WG, the rest I have to worry about. Keep well and positive.

[annekat]

Hi Barbara, nice to meet you. You would think that by now clinicians would be more clued up on this illness. There are a few sites on the Internet where you can get information but in my case my Consultants have told me they don't know what affect the prescribed meds are doing to my system. All they are doing is trying to dampen down the WG, the rest I have to worry about. Keep well and positive.

I still say that this forum is a better source of info than most of what you find on the internet, although there are some good pages on the Vasculitis Foundation website and other good links that people have shared on here. You also might try Marta's Babbly Blog.... you will find links to it in her posts on this forum, and try Andrew's web page on WG..... Some of these things may be found in the Stickies that are listed at the beginning of the forum main page.

[Reetsky]

G'day! Had bloods taken today. Off to renal clinic on Thurs. will know then if WBC count (currently 236) and haemaglobin (currently 10) have improved and whether I remain off Moefitil (this is what is causing the drop in levels). All the meds make me feel as if I rattle when I walk!! What a journey!

[marylz]

Welcome Reetsky! I think you will enjoy all the supportive people you will "meet" on this forum. It has a lot of good info on it!

Mary

[Joyce3692]

Hi your story sounds a lot like mine. Breathing tube the whole bit. Glad to see you are still with us. Good luck on you healing process.

[Barbara N]

I still say that this forum is a better source of info than most of what you find on the internet, although there are some good pages on the Vasculitis Foundation website and other good links that people have shared on here. You also might try Marta's Babbly Blog.... you will find links to it in her posts on this forum, and try Andrew's web page on WG..... Some of these things may be found in the Stickies that are listed at the beginning of the forum main page.

All but one of my doctors here tell me that since the can't cure my what they can do is keep me comfortable and prepare me, I assume for the up coming death. I am having a full flare at the moment and I fell of my horse yesterday so I really hurt. I have to in for xrays today. That was all I needed at this time. It was completely my fault, she was going great and we were having a wonderful ride but >I forgot to tighten my girth ant the saddle slipped around to her side and I was having a hard time staying on and she started to buck because the saddle was falling off.

[Barbara N]

I still say that this forum is a better source of info than most of what you find on the internet, although there are some good pages on the Vasculitis Foundation website and other good links that people have shared on here. You also might try Marta's Babbly Blog.... you will find links to it in her posts on this forum, and try Andrew's web page on WG..... Some of these things may be found in the Stickies that are listed at the beginning of the forum main page.

Hi Reetsky my answer to you is farther down the page on a mail to annekat, I don't know how i missed not putting it here. I just don't understand computers.I started a blog because I couldn't find any information so I started my own web, then I found this forum and found most of my information was wrong so I stopped writting.Maybe now that I know a lot more I will continue with my blog. I have had no luck with the Vasculitis Foundation or the auto-immune or the rare disease foundation-. I tried them all last year and they were all very nice and now I am officially registered as having two rare diseases. This year again, I wrote to alll of them and talked on the phone at great length and they never even sent me a pamphlet

[Reetsky]

Hi Barbara, sorry to hear your unwell. Keep asking questions and you will get answers from fellow sufferers. This site is superb and the people on it are all like us, victims of this pernicious assassin.

[annekat]

All but one of my doctors here tell me that since the can't cure my what they can do is keep me comfortable and prepare me, I assume for the up coming death. I am having a full flare at the moment and I fell of my horse yesterday so I really hurt. I have to in for xrays today. That was all I needed at this time. It was completely my fault, she was going great and we were having a wonderful ride but >I forgot to tighten my girth ant the saddle slipped around to her side and I was having a hard time staying on and she started to buck because the saddle was falling off.

I'm so sorry, Barbara. But if you can ride a horse with a full flare, I think your doctors have the wrong attitude and aren't giving you much credit! I hope you get through the flare and any injuries from the fall in short order and get back to your better days again!