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.

[jmmilliorn]

Leigh, I hope you are right. I hope we all make some progress this year. Rituximab was just FDA approved for WG and it seems to be the best medicine yet. The CC is very excited about it. I am hoping to get my approval from the insurance company today for my 2nd infusion. Feeling better every day since my first infusion. Yeah!

[bipinder]

Don't Worry it actually happens with all of us but soon u will recover fast after Rituximab.

God helps the Brave

[johnyenglish]

Hi Bipinder, I was diagnosed in May 2009 with full blown WG like yourself, prior to that I had been competing in triathlons and road races and was a very fit 43 year old. During my treatment (Cyclophosphamide and prednisolone) I still kept up my training, albeit at a much reduced intensity and duration. I still managed to put on over 20lbs in body weight even though I tried to watch my diet and exercise regularly.

I am still on medication (Methotrexate, Enalapril for my high blood pressure and Warfarin to minimise my chances for further DVT's) but have managed to stay 'flare 'free and last week entered a local 10 mile time trial (pedal bikes) and managed to do 23 minutes 23 seconds, only 73 seconds slower than my previous PB. I firmly believe that being fit helped me to deal with WG in the early days and part of my rational for maintaining my fitness is to be as prepared as possible if it ever returns. This is the first time that I've posted on the forum even though I've been a member for quite a while as I have felt slightly embarrassed that WG hasn't affected me long term as it has so many others.

Your not alone!

Regards

John

[marta]

I firmly believe that being fit helped me to deal with WG in the early days and part of my rational for maintaining my fitness is to be as prepared as possible if it ever returns.

I totally feel the same way. I lead a very active lifestyle prior to diagnosis, and also did the P90X workout a few months before - which made me a lean, mean, fightin' machine - or so I thought :)... I do know that I wouldn't have fared as well had I not been in the shape I was in. I haven't been as active as you boys since diagnosis but I am really wanting to get back in to shape and have started by getting a treadmill (which takes up half my living room) to start the process gently. I hope to be able to report back in the not toooo distant future that the old Marta is returning. And yes I also need to get into fighting shape in case this bad boy returns and wants to go another round.

[johnyenglish]

Hi Marta,

Well done, I did exactly the same (treadmill, Concept 2 rower and cross trainer) but it's taken me nearly 2 years from diagnosis to being back in similar shape prior to WG. I've really applied myself this year and so far have clocked up over 3500 miles on my bike and have started competing again.

Stick with it :-)

Cheers

John

[pberggren1]

I know prior to getting sick with Wegs I was in very good shape. I could easily do a 50km bike run 3 times a week and do long jogs the other days.

[Geoff]

I firmly believe that being fit helped me to deal with WG in the early days and part of my rational for maintaining my fitness is to be as prepared as possible if it ever returns.

Totally agree with you John. I am 15 years older than you but I was in the Gym 3 or 4 nights a week doing a 20k bike ride for a warm up (before Wegs). My recovery after about 4 days in hospital amazed the Docs.

I count myself very fortunate, but heed Smarta Marta's words about getting prepared for the 'next round' of this slug fest. Only now feeling able to start some meanigfull exercise. Just what did happen to that muscle?????

P.S stop playing with those Binos on the side of that inflatable!!

[Geoff]

Hi Bips and a belated welcome from me.

Can you tell us the specific type of Yoga you are practising?

[johnyenglish]

Hi Geoff,

Glad to hear that you're getting back into the exercise, I know it's not easy and it takes longer than expected but it's worth it to feel 'normal' again, apart from mondays and tuesdays after Methotrexate :-)

[marta]

Hi Marta,

Well done, I did exactly the same (treadmill, Concept 2 rower and cross trainer) but it's taken me nearly 2 years from diagnosis to being back in similar shape prior to WG. I've really applied myself this year and so far have clocked up over 3500 miles on my bike and have started competing again.

Stick with it :-)
Cheers

John

3500 miles this year??? Yeah Johny!!!! I hope to follow in your footseps (or draft as the case may be). My roadbike and mountain bike are sitting in my garage looking at me longingly, but my bike shorts and jerseys are mockingly laughing at me and my new girth - but I've thought of a solution... I'll steal my husband's jerseys for a little while :w00t:

[johnyenglish]

:thumbsup:

That's the way.

I tried running while I was taking cyclophosphamide and prednisolone but just couldn't manage it but I could manage to cycle with my mates. They had to wait for me a bit and my heart rate used to shoot up to over 180bpm easily so I had to take care not to overdo it.

Keep up the good work and if you want some encouragement you can join me and a few of my mates on Dailymile (My Home | dailymile (http://www.dailymile.com)), it's a good way to share you workouts and have a laugh with like minded friends, just search for John English, Newcastle upon Tyne, UK. You can enter any type of workout and it logs your miles and workout time.

Cheers

John.

[johnyenglish]

Or maybe not:confused:

Good luck with the training and let us all know how you get on.

John

[kelly]

hi bips i totally fell the same way i to had full blown wegeners and was diagnoised in sept 2008 with the prednisone i had a weight gain my wife and i joined a gym and i have lost 45lbs i have always been active but as you i am in the best shape i have been in for at least 30years i feel awesome im still on meds i go to the gym at least 3 times a week i sometimes feel to tired to go but when i get there and have a work out wow i feel good. keep up the
good work and the postitiive attitude

[vdub]

Welcome, bips! you will find us a very understanding group and I hope you can gain some info from us. I was running half marathons 5 years ago. Don't think I can run a half blodk now. Darn wegs really saps it out of you..... However, I do think i could packback with 50 pound back for maybe 10 miles, so its all about how you stress the body (I would be pay \for it however and that's what codiene is for,

[marta]

Or maybe not:confused:

Good luck with the training and let us all know how you get on.

John

I will do that John, I have been away for the last week or so in Dinosaur world (Drumheller, Alberta) with my folks and my daughter all the while fighting my first real cold ever since diagnosis (so pretty lucky overall) so I haven't been on the site much. The few little posts I have done were on my phone and that gets pretty tedious - especially for someone as long winded as me :rolleyes1:. I'm starting to get better and the severe phlegm attack seems to be subsiding so I'll get back on the proverbial horse. I was actually starting to feel better at the end of last week - it was mostly in my head and throat, and then I went for my first mountain bike ride since my last flare and the very next day I got the killer cough. I'm pretty sure I pushed it down there by going a little extra hard... but man did it feel good - the wind in my face, going down some of the winding technical stuff, not having to get off and walk any of the uphills. It's amazing how little tastes of the 'old normal' give you the fighting spirt to keep moving forward and loving life. I'll look you up on the dailymile.

Kelly, yeah, nice to see you back here!!!!

vdub, codiene, yeah baby... I have morphine too because the codiene didn't touch things after a while. I only use it once in a blue moon, but man it's good to have in a pinch. I also just discovered an old Eastern European way of helping a cough go away - or become less troublesome and it's quite a clean method and worked like a charm for me this last week. Soak a piece of wool (it's gotta be wool) with grappa - it's gotta be grappa (an Italian spirit made from distilled grape stem) and put it on your chest (I would just put it under my pijamas and sleep with it). I know it sounds like hocus pocus, but it took a cough that was severely painful and consistent and almost took it away while I had the stuff on my chest and made it mild afterwards. Can't hurt.

[pberggren1]

Glad to hear you had a good time in Drumheller Marta.

I use codiene and morphine now and then. I get the morphine from a friend of mine. My doc does not like me using it. I haven't used it since January now. I have used the codiene a couple of times in the last 3 months but only had to take one pill each time so that was good.

I have been thinking of getting a bike again this year but the last few days, for some unknown reason, my balance has not been that great. Getting some weird dizzy spells with the changes in tinnitus. The balance thing has always kept me away from getting a bike again. Oh well, I can still go for walks.

Might have to try that wool and grappa thing. I'm not sure where I will get wool, maybe a baby lamb, and never heard of grappa so I will go ask this Italian guy on the other side of town.

[Rini]

What kind of yoga? I was a swimmer... not so much now. I picked up a yoga movie after my first hospital round and could walk around on the higher dosage of pred. Now i am stuck for a while but I would like to know a good kind of yoga to start back up with soon. (I am not a runner)

[marta]

Maybe you should get on one of those tricycles for grown ups... they have motorbikes like that too now.

Wool - my mom got it from a Polish friend, but maybe a fabric store might steer you in the right direction, as for the Grappa - liquor store. It's expensive and if there are drinkers in the house you'll have to guard it with your life because apparently (I'm not a big drinker) it tastes really really good - and is thusly priced (I got a bottle to take home with me and it was about $26 at Superstore, and in Jasper it's about $36). It's hard keeping Brian and my dad away from it - Brian looks at my like it's almost blasphemy to be using it externally rather than the way it's meant to be used - INTERNALLY... ha ha ha.

I couldn't use the Tylenol because of my liver, can't use ibuprofen because of the pred and cytox, so it was up to codiene, and on my last flare I got a prescription for the morphine which I still have pills from (I use it vary rarely, and only take one pill at a time - unfortunately it doesn't give me the 'buzz' I hear about, it just takes the pain and dulls it a LITTLE bit)

[Rini]

I will do that John, I have been away for the last week or so in Dinosaur world (Drumheller, Alberta) with my folks and my daughter all the while fighting my first real cold ever since diagnosis (so pretty lucky overall) so I haven't been on the site much. The few little posts I have done were on my phone and that gets pretty tedious - especially for someone as long winded as me :rolleyes1:. I'm starting to get better and the severe phlegm attack seems to be subsiding so I'll get back on the proverbial horse. I was actually starting to feel better at the end of last week - it was mostly in my head and throat, and then I went for my first mountain bike ride since my last flare and the very next day I got the killer cough. I'm pretty sure I pushed it down there by going a little extra hard... but man did it feel good - the wind in my face, going down some of the winding technical stuff, not having to get off and walk any of the uphills. It's amazing how little tastes of the 'old normal' give you the fighting spirt to keep moving forward and loving life. I'll look you up on the dailymile.

Kelly, yeah, nice to see you back here!!!!

vdub, codiene, yeah baby... I have morphine too because the codiene didn't touch things after a while. I only use it once in a blue moon, but man it's good to have in a pinch. I also just discovered an old Eastern European way of helping a cough go away - or become less troublesome and it's quite a clean method and worked like a charm for me this last week. Soak a piece of wool (it's gotta be wool) with grappa - it's gotta be grappa (an Italian spirit made from distilled grape stem) and put it on your chest (I would just put it under my pijamas and sleep with it). I know it sounds like hocus pocus, but it took a cough that was severely painful and consistent and almost took it away while I had the stuff on my chest and made it mild afterwards. Can't hurt.

very cool, i like cough go aways

[jmmilliorn]

PB. I use hydocodone pills left over from the many months of mis- and un- diagnosis. Also got some from the dentist with a wisdom tooth extraction and more when I had my thyroid removed in Nov. It stops my cough pretty quickly, but usually constipates me the next day. I used them mostly to get through family gatherings, to sleep at night or to get through a church service quietly. I also have a few bottles of Hydromet and Tussionex that I stockpiled during the nearly six months of chronic cough I had. Thankfully, since being on RTX, the cough has stopped suddenly. I also am dizzy or light headed now. No more changing light bulbs or any other work on a ladder. I'm too weak to carry the ladder anyway. I can't wait to feel good enough to walk again. That is my primary goal at present.

[vdub]

Soak a piece of wool (it's gotta be wool) with grappa - it's gotta be grappa (an Italian spirit made from distilled grape stem)
I'm with your husband -- just take the short cut and drink it..... :-)

I'm not sure if you'll notice the time stamp on this message, but it's late at night. I couldn't sleep due to congestion, wheezing, and just having a darned hard time breathing. I'm still hoping it's a seasonal allergy, but I've had allergies my entire life and none have affected me like this. Sangye thought it could be an allergy to the mtx, so I'm watching the progress very closely. This is the first night I haven't gotten a sound sleep in about a year.

[jmmilliorn]

I haven't slept more than 3-4 hours in nearly a year. I blame it on the prednisone. The MTX gave me a bad red rash that encircled my entire torso.


I'm with your husband -- just take the short cut and drink it..... :-)

I'm not sure if you'll notice the time stamp on this message, but it's late at night. I couldn't sleep due to congestion, wheezing, and just having a darned hard time breathing. I'm still hoping it's a seasonal allergy, but I've had allergies my entire life and none have affected me like this. Sangye thought it could be an allergy to the mtx, so I'm watching the progress very closely. This is the first night I haven't gotten a sound sleep in about a year.

[marta]

This (along with the full body metamorphisis - but to a lesser degree) has been the thing I've hated the most about the drugs. The lack of sleep. I can't sleep for more than a couple of hours at a time, and then when I wake up I have a really hard time falling back asleep. I didn't want to go the sleeping pills route as I didn't want to add another issue that would need to be dealt with... so I've been just trying to suck it up. Luckily I got a little bit of training having a baby and then a toddler before getting sick but it still doesn't make it easy. I use to be a sleeper. Love my sleep. Now I get maybe 5-6 hours total in a 24 hour period. HATE IT! I'm hoping that as the pred goes down the sleep goes up.

[Rini]

This (along with the full body metamorphisis - but to a lesser degree) has been the thing I've hated the most about the drugs. The lack of sleep. I can't sleep for more than a couple of hours at a time, and then when I wake up I have a really hard time falling back asleep. I didn't want to go the sleeping pills route as I didn't want to add another issue that would need to be dealt with... so I've been just trying to suck it up. Luckily I got a little bit of training having a baby and then a toddler before getting sick but it still doesn't make it easy. I use to be a sleeper. Love my sleep. Now I get maybe 5-6 hours total in a 24 hour period. HATE IT! I'm hoping that as the pred goes down the sleep goes up.

I <3 the pred, makes it so I can move & i usually do to much and get really sleepy. My problem is i have 2 be up every 4 hr.s to tke painkillers and other of my MANY drugs. I tak naps but i don't sleep & with the tube I can't lay down,... It has been forever that I have not gotten sleep. Today was my graduation/ irthday / openhous & i had uped my pred from 20 to 60. the rehearsal yesterday I was just about crowing. Today I walked the ceremony and then partied. I am SO beat.

[pberggren1]

Marta, I so hear you about the sleep thing. I hope it gets better with a lower dose of pred.

Rini, glad to hear you were able to get out and party. You will soon get better and get rid of the tube and be albe to go to college. You have much to learn about Wegs and you can always find support on the Forum here. One thing to remember though is that you can never turn your back on Wegs. It will creep up when you least expect it.

[johnyenglish]

Hi Guys, I to suffered with the sleep problem when I was on Pred, I would often be up till it started to get light then I would grab a few hours sleep and try and catch up with a nap in the afternoon. As the pred dose was reduced my sleep pattern started to return to normal, it just takes time. Hang in there :-)

[Sangye]

Rini, I'm assuming your doctor told you to increase your pred like that?

[Rini]

Rini, I'm assuming your doctor told you to increase your pred like that?

yes I am finally started to do weggie drugs and have gone from 20 to 60 a day...strangely I lose weight and sleep better...i take it in the morning and then move more then i should during the day till i just have to sit down and sleep...i still get up every 4 hours for other drugs but I look less like a sick kid

[pberggren1]

yes I am finally started to do weggie drugs and have gone from 20 to 60 a day...strangely I lose weight and sleep better...i take it in the morning and then move more then i should during the day till i just have to sit down and sleep...i still get up every 4 hours for other drugs but I look less like a sick kid

You're not a kid anymore.

[norcalian]

Sleep has been a problem for me as well on Prednisone...of course I'm still on the really high dose. I have been taking a couple benedryl at night before bed and that has been helping. It at least gets me until about 3 in the morning and then it's off and on after that.