Anyone had any issues with flying and WG?

[Lorne]

Hi everyone. I am a new member. I was diagnosed in October 2008. I am working on getting into remission. Last year I flew on two different occasions and maybe coincidentally had my symptoms get worse shortly after flying. I have talked to several doctors and they have said my WG should not be affected by flying. I have seen nothing online about it either. I am going down to the Vasculitus symposium in Long Beach, CA. in July and am not sure if I should fly or drive. It would be a 4 day drive. Anyone had any issues with flying and then becoming more symptomatic or maybe even a flare up of WG? Thanks for any feedback. I appreciate it.
Lorne

[Aunnie]

HI lorne,
I was Dx'd in 2007 and have flown at least 6 times and have had no problems.Several times I have worn a mask if some one around me is coughing or seems to have upper respiatory problems.

I hope you enjoy the seminar,it sounds very interesting.The docs I see in Boston,Ma are going to be there,Dr,Peter Merkel and Dr,Paul Monach.

I hope this info has helped,I just joined this site yesterday.
Aunnie

[Brooke]

Hi Lorne~
I have not had any issues in the past with flying. I was also flaring at the time and didn't know it because it was before I was diagnosed so I had a lot of coughing and shortness of breath. Flying didn't make it any worse than what it already was though.
Good luck to you, that would be very interesting to attend a seminar on vasculitus.

[Sangye]

Hi Lorne, welcome to the group. I don't think flying could cause a Wegs flare, but pressure changes often cause swelling in various tissues. I wouldn't be surprised if your sinuses were more swollen and that caused pain. My injured knee really swells up with flying and my hands and feet do, too. I'm also wondering if the dry cabin air might have affected them.

What happened to your sinuses (eg. pain, mucous) and how long did it last?

Do you use a neti pot or some form of nasal/sinus irrigation regularly?

[pwc51]

I recently flew from UK to Phoenix, and back, approximately 9 months after diagnosis. I was fairly anxious as it seemed to be a flight that triggered the problem in the first instance (severe ear pain / sinus issues). I am still on a cocktail of medications however I suffered no untoward effects other than slightly more swelling around the ankles.

[elephant]

Yes, after I flew my sinuses and ears got worse. But, I was not diagnosed yet (WG). I still have fear of flying because it was so painful. I think if your WG is controlled then it should not flare, but if you have sinus damage....that might trigger some inflammation in the eustachian tubes and sinuses. Good luck.

[Aunnie]

I also used a nasal gel that my ENT suggested,and he said to use it as often as I want on the plane just to keep the nose lubricated and the ears open.It works much better than a nasal spray and doesn't burn.

Aunnie

[Lorne]

Thanks to all of you for the responses. My symptoms with regard to sinuses, nose and ears have been very limited. Upon first becoming symptomatic I had some nose bleeds only. My symptoms were migrating joint pain, muscle aches and deterioration,lung involvement (bleeding), nerve damage in feet and hands, and swelling in my feet with blood clots in my right leg into my groin. On one occasion after flying my muscle aches and deterioiration got worse. A few weeks later I flew and my lungs became involved (bleeding) and reduced energy levels do to less oxygen. I had finished my cyclo. treatment 2 or 3 months earlier and had started on cellcept for 2 months. The cellcept did not work for me at all since my C-anca only got as good as a weak positive and then I came home and landed in the ICU and almost died last September. As some of you mentioned, I also get more swelling in my leg and foot when I fly. I'm on blood thinners so I think more clotting should be prevented. Let me know if any of you have any more feedback, Thanks.

[elephant]

Wow Lorne, so what a journey. What medicine are you on now to keep your WG controlled? Sorry the Cellcept didn't work.

[Lorne]

I'm on prednisone (35/day). I just completed 2 infusions of Rituximab. I am hoping it will work for me. My Rheumatoloigist says I am a tough case, but he also got the reccomendation to use the Ritux from Dr. Specs who apparently is one of the foremost experts on WG. Dr. specs works out of the mayo clinic and speaks at alot of the Vasculitus seminars. Lorne

[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