Ocean Air - Sinus and Lung Effects

[Green Grass & High Tides]

Hi Weggies!

Im curious how many people who are exposed to daily ocean air have had severe sinus and lung involvement?

Evertime Im on the ocean it helps.

Tom

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[Pete]

I'm with you, Tom! A bad day at the beach beats a good day most everyplace else...

[Middlesista]

HI - I live on the coast surrounded by the Ocean and exposed to ocean air daily and am grateful that I live in such a wonderful place. . My lungs have been affected and have had sinus issues - although told no Granulomas found in sinuses although they were opacitified on MRI

[Alysia]

I live about 30 min drive from the medditeranian. while the air is good for my breathing, the humidity and the wind are making my joints more painful. so rarely going there.....

[Alysia]

Mmmmmm but I can post pics to cheer us up....

2473

2472

[Alias]

I find that the quality of air makes a big difference in my nasal/sinus symptoms. Ocean air, summer rain, a walk in a rain forest... all that stuff feels very healing. (I'm sure it feels healing for people who are not sick as well, but we are more sensitive, to say the least.) Not looking forward to the dry winter air here in Alaska.

[mishb]

When I was first diagnosed my ENT suggested that I get some real rest somewhere peaceful and beautiful to look at, to ease stress

My mum decided that we should go to Fiji as a family and the ENT said that the humidity, the temperature and the salt air would do my sinuses good.

Well, I can honestly tell you that I didn't get any worse, but my sinuses didn't get any better either.


If you look at the weggie map you will see members that live in coastal areas of many Countries, including Australia, and they also have WG/GPA, therefore it must not matter whether you live near the beach or live near a forest (like me). This condition just is not fussy, it doesn't care.
Strange how it helps some and not others.

I agree with Alaskatom, a change of scenery, no matter what area, is good for us anyway

[Titus3:2]

I live in GAINESVILLE FLORIDA,5 days,and then Ormond Beach nine days on a rotating basis.My avatar is the view from our condo in Ormond.The ocean air cleared up a lung infection that nothing else would.I walk on the beach a lot,and when it is windy,it hurts my nose ,and throat.So,I take the good with the not so good.Very grateful to live like this.

[Green Grass & High Tides]

Thank you. Oceanic tails from the wegs afflicted!
Well, it's pretty cool that I'm not hearing people saying, "Yes. I live near the ocean and my Sinus and Lung involvement is severe or worse."

I've been in Delray for almost a week. Before I got here my lungs tasted like blood most mornings and my sinus and throat was inflamed.
That went away after a day of ocean. Which is mind blowing considering how hard it is to stop that normally, as everyone here knows.
Neurological involvement increased due to increased activity and my vision and eye pain is worse. I currently have active, "severe" wegs but Im putting off chemo as long as possible.
So, I know, obviously, beach is not a cure but I live in Asheville and get deep into some good mountain air. It beats Jersey but doesn't hold a candle to the ocean effects on sinus and lung.

This is the first time a drove myself on a long trip in over two years. It was sketchy. I took a wrong turn and made a long ride longer. Wegs in the brain did some damage.
But somehow, balancing meds, rest, exercise, nutrition, low stressors, I was able to enjoy a great week with my kids. No bigger prize. None.

So, anyone struggling, in the marathon of painful days, I offer this as hope. Help others, forget yourself and each day can get incrementally better. Undetectably better at times. Slowly? Yes! But it accumulates.

Kids and wegeners can be really, really hard to manage.
Glad I din't give up. You never know how many precious moments await. 2475

[Alysia]

Tom, if your wg is active, dont delay the chemo. The longer you wait, the harder it will be to quiet the beast. Also it can cause more damages.
I am glad that you had great time. Take care. Sending prayers....

[Gab122]

Hi Tom, I see under your post that your treatment plan doesn't include meds at all. Can I ask why? Also, what is "raising your anabolism"?
Newbie still learning.
Thanks,
Gab

[Debbie C]

I live in GAINESVILLE FLORIDA,5 days,and then Ormond Beach nine days on a rotating basis.My avatar is the view from our condo in Ormond.The ocean air cleared up a lung infection that nothing else would.I walk on the beach a lot,and when it is windy,it hurts my nose ,and throat.So,I take the good with the not so good.Very grateful to live like this.

Hey Titus,since I am wanting to move....why don't I stay at your Gainesville place for 9 days then go to Ormond for 5 !!!?????:lol:
But seriously Tom, I always feel better when I go to the ocean but you really should not wait getting treatment,this isn't going away and it will only get worse..Take care,glad you had a nice vacation !

[Green Grass & High Tides]

Thanks Everyone! Lets just pretend that "no chemo" statement was a test! Can't abandon science with this crew! Ha! Yes! Proud of my weggies!

Pred is holding for now, despite CNS, lung, eye, sns flaring. In June I got methotrexate poisoning and was prescribed some sort of antidote. Took a long time to heal. Ulcerations from mouth to intestines. It was a bad scene. Dont get it!

Will see specialist tomorrow and decide on meds. After 17 years I find that when I can help control the disease organically, through lifestyle, then I must try. But remember my disease didnt respond to Cytoxan or Rituxan. They just made me worse.

I measure quality of life against meds. MTX stopped some excruciating neuritis pain that kept me up. It cleared some lung stuff too. But makes me very, very sick. Couldn't have had time w my kids on mtx. No travel.

1/4 of way home from Delray Beach I had to stop. I laid on a concrete table unable to go on. Even took more pred (allergic- Adverse Glucocorticoid Reaction). The kids paced nervously? But my neurologist gave me some provigil, so I took that and was able to finish the drive! Shocked.

Raise Anabolism means to increase the rate at which cells repair. Tapered exercise with light weights and cardio will do it if done regularly with nutrition. It's helpful to the HPA Axis functioning, which is the area reponsible for telling our immune system not to attack "self cells". That misdirected attack, occurring in a small portion of our cells is Wegeners. Most of our cells work fine.

NIH will have more accurate info. Sorry, I haven't studied that in a while. I just know it helps but doesn’t replace meds.

Gotta get more ocean soon! Definitely helped!
Tom

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[Alysia]

Tom, you can still try Imuran or cellcept or leflunomide. Pred is not enough. Sorry. Good luck at the meeting with the expert. Please update us.

[Green Grass & High Tides]

Tom, you can still try Imuran or cellcept or leflunomide. Pred is not enough. Sorry. Good luck at the meeting with the expert. Please update us.

Thanks Alysia - I'll ask about Leflunomide - Arava today. I have liver damage so that may why they don't suggest that one. Cellcept was ruled out and Imuran made me worse. When the wegs was in the brain it was very iffy if I'd make it so they gave me a pulse therapy of Solu Medrol 1 gram per day for 3 days. Saved me. But made me incredibly sensitive to meds and psychotic. 2 years of strong chemo was all my body could take. Restoration is needed. Trial and error or medications has been excruciating. The docs look baffled and feel awful when it backfires. They were once liberal with med changes now they get a look of panic when I suggest something different!

t

[Alysia]

Ask also about Orencia. It is a new biological chemo for RA and my wg dr. Said that it can be good for WG as well.

[Titus3:2]

Tom,I am sorry GPA,and the drugs used to treat it have put you through the mill.It sounds like you have some pretty good docs.Doing the best they can.I am glad you enjoyed your trip to Delray Beach,and got home safely.Let us know how you are doing.Debbie C.maybe you can get me an appointment with your Kickass WG doc,and put me up at your place.Good luck everyone.

[Debbie C]

Hey Titus,that sounds like a scary road trip home...glad you made it back safely. I also can not handle meds well, I also just take 5 mg of pred...so far so good. I go to Cleveland Clinic, all you have to do is make a call. Hope they find something you can take that doesn't make you worse.