2 Years Later

[Pmarsh]

I haven't been on here for a long time, but I thought I would update my situation. Perhaps some that are newly diagnosed would like to hear of one story of where someone is 2 years after diagnosis.

First off, I was diagnosed after a long period of sinus issues and rapid onset lung symptoms that sent me to ICU for a week and a half. I was lucky to have a relatively quick diagnosis and started the usual Cyclo and pred treatment. This seemed ok for a while. After 6 months I tried to switch drugs but quickly had a flare and restarted a course of Cylco. Things settled again, but after 4 more months of Cyclo I started to have symptoms again. The docs figured I was becoming tolerant to the Cyclo, so I started on Rituxan. This drug seems right for me. I took the first dose last Sept and seconds "precautionary" dose in April. I tapered off Pred in June and have been symptom free. Overall I'm feeling good... basically back to "normal".

I was a very active person before this. The year on Cyclo was tough but I still tried to stay active. This past year (on Rituxan) I have been able to get back in shape and be as active as I was before all this. My lungs still aren't perfect, and probably will never be, but I can head out for a hard 3 hour bike ride and hold my own. I was hiking at 10,000ft elevation and was no more out of breath than expected. The best thing is I have lost all my pred weight (20 lbs) and look like myself again.

It was frustrating trying to get this thing under control, and I realize many others have a much harder time. My docs deemed me to be a "difficult case" but eventually things came under control. My advice is to take your docs advice but also research everything thoroughly and always ask for other opinions. Like many, I have a team of docs. They work well together and have often vetoed each other decisions. I'll also add that don't be afraid to exercise as much as you feel you can. The day after my first Rituxan dose I cycled in a 130km road bike event. I had nothing in the tank but foolishly pushed to the finish. I had not ill effects from this and actually recovered faster than some of my "healthy" riding partners.

Cheers, and all the best in your Recoveries.

Pete

[drz]

Thanks for sharing this. It is great that you have been so fortunate and hope many others, especially the young and healthy ones recently diagnosed, can do as well. I am guessing you are young, strong, and in good shape and have had a remarkable recovery and resistance to any problems from over doing things. Sounds like you also have minimal damage to your lungs, kidneys, and little current joint pain. Many young healthy people who have initial attack of GPA often seem to do as well and they should take encouragement from your post. However, some may not be so fortunate to have such a full recovery or as quickly despite their best efforts and appropriate treatment. These people may need to be more cautious about over doing their exercise.

Knowing how much you can push yourself physically can be a difficult area. For some people over doing it might be extremely serious so it is best I think to begin your recovery work under professional guidance from doctors and rehab specialists to make sure you are doing it safely. I spent over three months in a rehab hospital and another rehab facility plus another year of out patient work. I had to learn to accept a new level of "normal" ability to function due to damage caused by the Wegs. My rehab people often cautioned me to be more patient and to be careful not to overdo things physically as I often wanted to do. This can be a very tough adjustment for those of us who are often impatient to try get things back to the way we were before the Wegs illness. It is encouraging though that more young people seem able to do it, while others need to work on accepting a different self image of what we can realistically do and may be able to do in the future.

[carriej22]

Nice to hear it, as recently diagnosed in May (even though it feels like forever ago) and been through RTX and now tapering off pred... I feel like crap.

Nice to know that hopefully sometime there will be an end and I'll get back to myself!

[KathyB]

Congratulations, Pete! Sounds like things have really improved for you! Rtx has helped me as well. I don't think I'll ever be in the shape I used to be, but your story is encouraging! I start at the new local YMCA next week with a consultation with a trainer. It'll be fun teaching a young person about WG and even better as my husband and I make a routine of the Y! Keep up the good work!!

KB

[chrisTIn@]

IOverall I'm feeling good... basically back to "normal".

The best thing is I have lost all my pred weight (20 lbs) and look like myself again.

My advice is to take your docs advice but also research
Pete

Thanks for sharing your story!

Although everyone is different, and every case of 'Wegener's' is different, it's encouraging to read your message.
Gives people hope!

Hope your remission will be stable, and you can go on with your active lifestyle.
I'm two years after my diagnose too, and feeling pretty well myself.
Still I'm aware of the 'sneaky side' of Wegs. :wink1:

[Happy Camper]

Pete,
Thats great to hear that you are doing so well. I will also be approving my 2yrs. in remission in Oct. very excited about it.