Hi ! New To the forum

[bipinder]

Hello Everyone !

I'm Bipinder Anand (Bips) from New Delhi India .

I got Diagnosed for WG in March 2009 after 4 months of touture . I had Full Blown WG ( Ears ,
Nose, Eyes , Lungs, Kidney, Blood, Artheritis , Bleeding etc) .

Well we all know if diagnosed WG can be curbed supressed by medicine with have sever side effects,
I have a point to say here:

During my Medication , I was on high doseage of steroids (Omnacortile 80mg) and cyclophoamaide ( Endaxon 150mg Per day) , I used to pay alot of time in Gym and Yoga on my fitness. I had a relapse six month later ie oct 2009 but kept my gym and Yoga on and kept my body fit and used burst a lot of energy in gym.

As a result today i am more fitter , healthier and stronger then my pre illness time.

Hence from my experience I suugest that buring out energy in gym is very important aspect in WG esp when on high Doasge. Since we all go for periodic Check up, makes us fitter than any body else in the family.

I may be exception bcos WG did not effect any of my bobdy part permanently but would like to know has anybody else gone through like this.

Plz update ?

Regards

Bips

[Jack]

Hi Bips and welcome

You are in the minority group in being able to tolerate high level exercise while still having Wegener's symptoms. The more usual situation is that it wipes you out perhaps for days and if you continue to push it can result in your condition going down hill. I used to practice both Karate and Yoga, but had to give them up, although when I was going through a good period I was able to go back to the Yoga for a while.

If you can tolerate the exercise without it causing problems that has got to be a good thing, but everyone is different and you have to listen to your own body.

[bipinder]

Sorry Jack Sir,

I sound like overconfident but i m the only Weggie i know , so neihter i came across all the cruel aspects of WG nor i know whats in store for me. I just refered my personal expreience.

[renidrag]

Welcome and Hello. We are all different here, one woman is trying or has climbed Mt. Everest! Me, I don't have the strength to mow the lawn or do the gardening. That coming from someone who never stopped. So be happy, as we are for you. Encouragement and ideas never hurts anyone.
Dale

[nagesh]

hello, Bips welcome

I live in Bangalore ,
my 15 year old son diagnosed in jan 09 at his age of 13 years.with almost all the same symptoms and involments that you mentioned.
very glad to know about your fitness it realy raises good hopes in many,
when compared to his pre illness, his energy levels at present are 75 to 80% , during high doseses of treatment it was only 50 to 60 % .otherwise he was very over active before.
my email id is [email protected] and mobile 91 9341215692 let me know about your contacts
i would like to discuss about the line of treatment duration etc.

[delorisdoe]

Hi Bips and welcome

You are in the minority group in being able to tolerate high level exercise while still having Wegener's symptoms. The more usual situation is that it wipes you out perhaps for days and if you continue to push it can result in your condition going down hill. I used to practice both Karate and Yoga, but had to give them up, although when I was going through a good period I was able to go back to the Yoga for a while.

If you can tolerate the exercise without it causing problems that has got to be a good thing, but everyone is different and you have to listen to your own body.

I am going for a hike tomorow that I was going on the last half of last year before I got "pneumonia-not". It is 4 km up and down dirt hills through waterfalls and rapids etc. I am a little concerned how it will go as a day at work is killing me lateley but I really miss going. I am armed with my cell phone and inhaler. No worries though. I am bringing my friend with me and she is trained in cpr and also has a cell phone. lol.

[bipinder]

Its very unfortunate that your son was diagnosed at such a young age. I feel really sorry about him.

Your are always welcome, my no 09811168675. I consulting a Rhemutologist Mr Rohini Honda.

Feel free to call or ask anything any time.

[elephant]

Welcome, that is great your in such good shape. It took me a while to get back in the swing of things. Glad you have a great doc!

[jmmilliorn]

I wish I could exercise. I'm too weak and short of breath to walk to the barn at the ranch. I used to work 8 hrs. a day outside on the ranch. Plus I got a blood clot in the right leg while taking Methotrexate. I can't even get shoes on the right foot some days. I am reducing steroids now, but don't know how i will get the weight off unless the SOB and chronic cough go away. I don't have enough strength to walk the length of a grocery store presently. Taking Rituximab now. Maybe that will help.

[delorisdoe]

I wish I could exercise. I'm too weak and short of breath to walk to the barn at the ranch. I used to work 8 hrs. a day outside on the ranch. Plus I got a blood clot in the right leg while taking Methotrexate. I can't even get shoes on the right foot some days. I am reducing steroids now, but don't know how i will get the weight off unless the SOB and chronic cough go away. I don't have enough strength to walk the length of a grocery store presently. Taking Rituximab now. Maybe that will help.

I beleve it wIll get better for you.