Another newbie

[Rita.M]

Hi my name is Rita & i got an early Xmas present "Wegeners".I inherited this from my father so know a bit about it. It all started when I had an ear infection that did not respond to antibiotics , then about 3weeks later i could hardly walk my knees were so bad.It happened so quickly in a matter of weeks I was deaf, could hardly walk or use my hands. My ENT sent me of to have some tests, i ended up in hospital had a kidney biopsy & found out it had just started up there. Now I am on Cyclophosphamide IV, Prednisone & a very strong Bactrim. The funny thing about this is that I feel so well.I have more energy now than I had when I wasn't sick. Think It must be the prednisone because all my joints &ears etc.are ok now.

[mishb]

Welcome Rita,

Wow your father has WG as well? That's a harsh type of inheritance you received there......thanks dad
I guess you were also very lucky, in a way, in that you and probably your doctors knew what to look for, thanks to your father, and were able to get things under some sort of control quite quickly.

Welcome again, and if there is anything you need to know (other than what you have already learnt from experiencing it), the people on here are a wonderful bunch to get to know.

Take care and as always.........

[Widthofacircle]

Hi Rita and welcome to the forum.
Sounds like you have been lucky to get things quickly under control. I hope you will always feel as well as you do now but for those times when you may not, there are some fantastic people on here who can give invaluable advice and support.
Brendan

[Psyborg]

Welcome to the forum, but sorry you need to be here. I think you might be our first member that has a direct family link. I find that very interesting. I hope we can provide some help to you as needed.

[Dirty Don]

Welcome Rita, there's lots of good peeps on here who have vast experiences and knowledge outside of a doc's care too. Invaluable resources here and some pretty bad joke tellers, including myself...it's the drugs!!!

It's the pred helping you out, keep feeling fine...and hope the tapers start soon and work well for you. My dx was in August, and I went down pretty quickly with a major flare...good to be dxed...kind of! LOL
Your 'family link' intrigues me as there are a couple of articles out there on WG research that seem to be trying to find a genetic link for WG although early on in the disease docs have said it's not likely...you are the first Weggie I've heard of also with a possible genetic link.

The best to you!

[annekat]

Add my welcome to the list, Rita! I've been diagnosed since April and just started posting about a month ago, but have been reading the forum since before my dx and have found it to be an essential part of my daily life. I look forward to hearing more about your Wegener's and the progress of your treatment. Mine started the same way as yours, with a severe antibiotic-resistant ear infection in both ears, followed by severe joint pain which subsided and then returned months later. I thought the joint pain was a reaction to Levaquin, the strong antibiotic that finally killed the infection, but now it seems it may just as well have been the Wegener's. I didn't get diagnosed until 2.5 years later, after a whole bunch of sinus infections and ear problems, so you are lucky to have been dx'd so soon after your initial symptoms.

Anne

[Dryhill]

Rita, welcome to our very exclusive club and to having such an exciting, fun disease ........ I mean who would want something everyone had heard of and could spell!

Like the others I am facinated that your father had WG too, especially as I was told that it was extremely unlikey that my daughters would get it. Hmmm seems the good doctors do not know everything, what a surprise.

Jim

[NicShaf]

Welcome Rita. I totally understand getting that wonderful & unexpected Christmas present, I got Wegs for Christmas last year
Glad to hear you've started treatment and are feeling better already. I definately agree with you, the energy is probably the Pred, but I bet its nice to feel better after feeling not good for so long, I remember that feeling.
Hope you keep healing and doing well in the new year!

[Al]

Happy holidays, Rita, in spite of your special gift! Most of us have similar prednisone stories. When I was on the high-dose stuff, I was rarin' to go by 5:00 in the morning, which was, for me, unprecedented; ordinarily, that is closer to the time I would go to bed. And we all know the, er, joys of coming off the steroid high. You raise an interesting issue concerning genetics. The statistics show that there WG does have a heritable component, but that it is quite small, so there is generally very low predictability for the disease based on family associations. But the probability is apparently not zero. Thanks for sharing your story!

Al

[Sangye]

Hi Rita, welcome to the group! I'm glad you got dx'ed before the Wegs went too far. Hopefully you can get it under control without too much trouble.

The high energy is definitely the pred. Just take care with what you do while on high-dose pred (ie, 20mg and up). Pred makes it much easier to tear ligaments and tendons, and while you may feel like it is giving you energy the pred is actually depleting the adrenal glands quite badly. If you overexert now, you pay later. High-dose pred makes my mind very active but it actually weakens me physically. For me, it gets worse as the dose is increased so I'm never tempted to overdo it on high-dose pred.

It's very interesting that you and your dad have Wegs. I'd want to see a detailed history of common toxic exposures and infectious agents before I agreed that it was directly inherited. (I'm not asking for that, of course-- just saying that if I were a researcher I would do that) Anyway, glad you're here.