Anyone had any issues with flying and WG?

[elephant]

Lorne, I think the Rituximab is going to work for you. Sounds like your in good hands.

[Sangye]

Lorne, you and I have very similar cases! Tendency to lung hemorrhage, joint pain, blood clots, etc.... I had the same results with Cellcept and if we use it again (very likely) we'll use the maximum dose of 3,000 mg instead of the 2,000 mg I was on for 2 years.

I've recently finished my second round of rtx and am finally feeling pretty good. Research shows rtx works best for "vasculitis" type of Wegs--lung hemorrhaging-- and for refractory Wegs (unresponsive to other treatments). That's my situation and sounds like yours, too.

I hope rtx works great for you.

[jola57]

Hi Lorne, I was diagnosed in November 2006. Since then I have flown several times to Europe and Carribean without any problems. I used to take Antihistamine 2 hours before the flight, but have not the last 2 flights. Beyond slight swelling of feet I have not experienced any flares. I am flying to UK on 21st and will take higher dose of pred since I am down to 5mg and the antihistamine just in case.

[Cindy M]

Hi, I am sad to hear that cellcept didn't work for you. I am just starting cellcept and I am hoping that it is the drug for me. I have been on methatrexate, 2 rounds of IV ritux and over a year on cyclo and none of them worked. I am sure hoping to have better results with cellcept. Has anyone out there have any luck with cellcept.

[Jack]

Yes, I was having relapses for five years before I switched to Cellcept and have not had a flare since.

[elephant]

Cellcept is working for me, but I probably need to have it increased. Still have sinus and ear issues...but not that bad.

[Sangye]

Cindy, I think Cellcept is great. It was working for me but 2,000 mg was not a therapeutic dose for me, because I never stopped having severe joint pain and extreme fatigue for the 2 years I was on it. My docs and I thought that was just damage from Wegs, but in retrospect it's clear that the Wegs was still quite active.

When things began to worsen last spring, we raised it to 3,000 mg. Unfortunately the flare was in full swing and it wasn't strong enough to put out such a big fire.

A few months ago Dr Seo said if the rtx gets things under control, he'd put me back on Cellcept but at the highest dose-- 3,000mg. I see him in 2 weeks and we'll discuss the plan. I can't take mtx and I have a bad gut feeling about imuran so if I have to go on something I hope it's Cellcept.

(My bad gut feeling about imuran is only about me, not about the drug in general.)

[Col 23]

Hi Lorne
Welcome to the group.
If you get blood clots have you thought of support stockings for the flight and taking an asprin. Have you also discussed this with your doc?
cheers Col 23

[Lorne]

Hi Col 23. I do wear a support stocking every day on my leg and foot that has given me trouble with clots. I am on a blood thinner called arixtra and I am going to talk to my hematologist about uping the dosage for my flight. I also plan to discuss with him the pros and cons of driving vs. flying. Driving and sitting in a car for long periods can also promote clots too. I am probably going to fly though. Good luck Cindy with the Cellcept. I think I'm just a tough case. I'm sure it will work for you. Lorne

[Deanne Hull]

H Lorne, i have just flown from Perth, Western Australia to Sydney on the other side of Australia and had no problems at all, except for a sore bum , but my specialist did say to be careful if my ears are playing up as the pressure may cause perferation of the ear drum and I will check with him before I fly anywhere from now on