13 year old just diagnosed

[Doug]

WG has weakened your immune system, making you more vulnerable to infections. You assert an infection is related to your WG. Your comment Jack, to me, seems dead on. You have taken position A. So have your doctors, but they think their position is B. They can't see that you are stating the same thing as they, just from a different shade of wording. If it didn't cause the infection, it sure contributed to the body's failure to fight it off.

If I thought you meant WG caused the infection, then I'd call you Hitler and trample your garden, the usual American response to things we don't agree with! Ha!

[Sangye]

You crack me up, Doug.

Jack, I hope you feel better soon. I can tell you're still not up to speed.

[Doug]

Jack, I hope you feel better soon. I can tell you're still not up to speed.

Me too, Jack. I still think there's more to what you were saying than what I got.

I'll try again: An effect of having WG or a certain infection is Bronchiectasis (a chronic dialation of bronchi or bronchioles, according to my dictionary. Whew, Jack!). You claim WG is the causal agent, because it is the root of all evil once you get it; your doctors claim it was the infection, perhaps because they detected the infectious agent in your (spit/urine/blood/?). Back to the earlier entry. The infectious agent "shot the bullet", but WG "made and handed over the gun".

(Go wake up Jack, somebody! Help!)

[jola57]

Sorry to hear your 13 year old son being aflicted with this BFF. Plaquenil was given to me at the very beginning before Wegs diagnosis, they thought I had polymyalgia rheumatica. Once Wegs was diagnosed I was immediately taken of plaquenil and put on a higher dose of prednisone and cylophosphamide. The best news is that he seems to have only limited involvement (although it may not seem that way to you at this time) seeing a good specialist on the outset is important. I lost hearing partially last year and just muddle thru, I adjusted and function quite normally without hearing aids for now.

[Jack]

(Go wake up Jack, somebody! Help!)

No need for the wake up call.

It is now 4:30 in the morning and I've been up since 1:00 with ear ache due to the fluid build up in my left ear. I suspect that this could be an effect of reducing my steroids. Perhaps I'll try a one off dose of 15mg. I've already tried the usual antibiotics.

Wegener's is such fun!

[Doug]

Ow! I went through that with shingles and post shingles: This was the start of my disenchantment with the ENT breed as months went by without any reasonable result (i.e. reduction of pressure). I hope you get relief soon as it does mess up sleep and cause stress

No answer needed now for ear ache because of fluid build-up behind the ear drum. The ear concerned (totally deaf) is good for nothing but the pirate hoop earring necessary to offset the herpes zoster lip scarring that necessitates a parrot permanently attached to the opposite shoulder to give me the appropriate gestaltlichkeit (no doubt a coined word, so I shall rush to the copyright office) to pull off the look. Of a pirate, that is. Yar! Arrgh! And ahoy me maties!

That is how I turn that bushel of lemons into lemonaide

[Sangye]

Aw, Jack... I know you must be completely frustrated. It's that feel-a-little-hopeful then get-smacked-down thing that can happen with Wegs. That's the land I've lived in, too, so I sure understand.

What pred dose were you down to? I know you slowed your descent recently. When you get it stable again, can you drop it by 0.5 mg or even 0.25 mg? Doctors might laugh (no, they WILL laugh) but your adrenals won't. You might need to take months just to drop from 6 mg to 4.

[Jack]

Thanks for all your thoughts folks!

I'm sticking at 8mg at the moment (reduced from my normal 10) and think that I have slightly more strength in my legs. I can get up stairs with the help of only one hand now instead of two. However, I think the ear thing has got worse. It used to be just a feeling of pressure, but it is often painful now. I'll stick with it for a while longer to see if it settles down and try not to resort to the increased pred again.

[Sangye]

That's good to hear (no pun intended). You know all too well that often things calm down on their own once you adapt to a new dosage or drug, etc.... Wegs likes to be the one making changes, you know? It can't stand it when WE do it.

[Doug]

Take care on the stairs. It's good to hear you are able to go up with one hand helping now, though! If you aren't the poster boy for Wegener's granulomatosis, I don't know who is. I've come to respect you a lot for how you handle an astonishing load of vicissitudes, among which are my smart remarks! Ha! Jack, we need a t-shirt with your avatar photo on it!