Char

[Char]

I found out that I have Wegener's on July 17,2012. WOW. Never knew there was such a thing. I was a factory worker, inspector/auditor, that can not longer work at my job. Now I would give anything to be back there with my friends and co workers. I am going through infusions right now vto try and get this thing in remission. They are giving me Cytoxan. I have had two with another one at the end of this month. What I would like to find out is do you ever get close to getting back to the way you were before you get this. I know that meds have a lot to do with lost of strenght and eneregy but do you get some of it back. I had blood in my lungs so I also have scar tissue there and shortness of breath. Can you biuld up the lungs again so that you are not out of breath when you walk the stairs? I was an active person and now I hate the limitiations I have because of this Wegeners. I know that getting off some of the meds will help, but I stuill would like to know if I can get back some of what Wegener's has taken from me.

[Pete]

Hi Char,

Welcome to the forum. Sorry that you had to find us, but I hope we're helpful to you.

Short answer to your question. Yes you can get close to where you were before disease onset. The key success factors are the effectiveness of the medications and your attitude. A piece of advice is to find a doctor who specializes in WG/GPA if you haven't done so already. Also, ease back in to physical activities slowly. I walk 2-3 miles most days, but had a hard time doing 1/4 mile when I started after recovery from the initial onset.

There's one member of this forum who climbed Mt Everest after she was diagnosed, and she just recently mushed over half (600+ miles)the Iditarod after breaking her pelvis early in the race. I guess you could say the sky is the limit.

Good luck and keep in touch!

[Dirty Don]

Welcome Char - this is a great place to learn & share WG experiences. I'm a little over a year and a half from dx and drug initiation. I had bad lungs and wiped out sinuses. I feel better than I have in over 3 years. My lungs cleared early on while my sinuses remain pretty much messed up. I still cough, but no blood or clots anymore. As Pete said, attitude is a major part of the recovery...although we will have this disease forever, I am determined to stay in remission! Best to you!

[mishb]

Welcome from me too, Char.

It is a sucky disease.
My guess would be that you already were lacking strength and energy prior to the medication.
What are you taking?
Higher doses of pred will most likely give you more energy than you have had since becoming ill.

As the others have said, things will get back to normal, in time.
You may however find that it will be your "new" normal. Possibly very close to what you were like prior to becoming ill, but not quite.

Take care and as always ..............

[drz]

The degree of your recovery depends upon several different factors. Younger people in good health and a mild attack may recover their physical function fully if they obtained proper treatment and a complete drug free remission. Older people in poor health before Wegs who have a severe case of Wegs and never attain even a drug induced remission will have significant limitations in their physical functioning. Most people do get better with proper treatment and recover to some extent even from severe cases but if there is extensive damage to lungs and kidneys or other parts of body, some adjustment and compensation to the changes in the body will be necessary. No one can predict for sure what your case will be. Three years after my diagnosis I am doing much better than anyone thought likely, but I do have many limitations due to my severe damage from Wegs. If you survive the treatment and most do, things do generally get better.

[Randy]

Welcome to the form. Yes, once your doctors get WG under control it does get better. I like to divide my life into months, at the end of each month I look back on where I was at the start and where I am at the end of each month. Most of the time I can see improvement. That gives me the encouragement to keep going. It takes a long time to recover your strength but it will come back. The best advise I got was from my physiotherapist who kept telling me to take it slow. With weight trainning, start out with very light weights and slowly increase them. Start out with a walk around the blog and expand it a little each day. When I started listening to her and doing what she said I could see great improvement each month.

[annekat]

Welcome, Char. Yes, you can expect to feel a lot better in the near future and get a lot, or even most, of your normal functioning back. I've been dx'd for 2 years, felt a lot better after the first year, and feel even better now after the second, despite having a small flare this winter. Increasing my meds got me over that fast. Everyone is different and most of us have some ups and downs, but there is plenty of hope that you'll be pleased with the results of your treatment, given a little more time.

[Alysia]

Hi Char,
welcome to the forum.
you can regain your abilities with time, good treatment and exercises.
having WG is also an opportunity to take a look at your life, and to ask yourself if you are living them in the way you really want to live.
after a year of having WG I changed my place of work to something I wanted for years. very good change for me. I changed more things to live with less stress... I like those changes.
good luck !