Hi ! New To the forum

[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