Looking for input.....

**Sean48** · 08-11-2010, 05:53 AM

Hi.....I just got my blood results back and my inflamation is normal and so are my blood tests. Very happy aout that. I have been on cytoxan for 3 weeks and am down to 40 mg of pred. I am glad to say I have not had any side effects. . I get very week just from having a shower or making a meal. I am still out of work and don't know when I am going back. Not that I am in a hurry. :-)
My doctor says my tiredness is the disease itself and the tests and surgerys I had in the 3 week stay in the hospita...... If my bloodwork and inflamation is good why am I so tired all the time? Some of you exercise. I can't imagine doing that.....How long did you stay out of work after being diagnosed?
My WG is my lungs, although i had so many of the other symptons....(like everyone I had excuses for them all.).....I had an open lung biopsy and biopsys done on most of my organs.....and without the lung biopsy, I wouldn't have been diagnosed.
Can anyone enlighten me any more on why I am so tired and how long some of you were like this. I am not driving yet either. I can't even imagine going for groceries.
Thanks for any comments you can send my way.....

**elephant** · 08-11-2010, 05:59 AM

Sean48, I have not worked for two years. But the first year I could not exercise...yes you will feel tired for a while. It is the cytoxan and the disease. How is everything else?

**Col 23** · 08-11-2010, 06:05 AM

Hi Sean48
I was diagnosed Dec 2009 and still get very tired. i also had it in the lungs and also the eyes. When I was initially on the high dose of Pre 80mg I couldnd sleep and was full of energy. Im now on 13 mg of Pred and taking Methotrexate and 9 months on I still need rest and more rest, just go with the flow and listen to your body for the moment. It takes a long time for the meds to kick in. My doc advises to go at 10%, no stress, take the meds and rest and let the meds do the work.
cheers Col 23

**JanW** · 08-11-2010, 06:06 AM

Sean: While I have not had the fatigue, nor been on ctx like many here, I have had surgery to repair my windpipe due to damage from WG (and will have to do it several more time) and can say that exactly what my surgeon warned was true -- surgery takes more out of you than you think. Although mine was a major surgery, it only takes about 20 minutes but I was wiped out for several days afterwards.

I just returned from the Vasculitis Foundation symposium with many attendees there with WG and yes, it does get better. Some of them absolutely were energizer bunnies...we started at 7 a.m. and went until 5:30 a few days, so it can be done. Many of them were people older than me (I'm 45) diagnosed several years ago.

**misskay** · 08-11-2010, 06:48 AM

Sean, I was diagnosed in June 2010 and also have lung involvement (our hosp stays and biopsie match pretty well). Talked to my Rhumy about this very issue this morning. He said "it's gonna be a while". Said it was the WG and the meds... once we get things more under control and get the Pred dose down more I should start having more energy. I have been on the Cytoxan for a month now. Have just started to do some small things on my own, but get very very fatigued. I can make a short trip to grocery and walk very slowly, taking breaks as needed (the other day a little old lady with a walker passed me I was moving so slow). Sunday night I made dinner (chicken and dumplings...) but both wiped me out. Even going to doc appointments exhaust me. He told me to be patient... I'm NOT! I want to feel like 'me' again.

My husband says he can see a big improvement in energy and how 'sick' I look... doc also ssaid hubby would notice changes before I did. He's right, as usual. Hang in there...

**andrew** · 08-11-2010, 08:15 AM

Hi Sean
As misskay aluded to, you'll look better a long time before you feel better

Keep in mind that, metaphorically speaking, you've been body slammed onto a bed of nails by Andre the Giant. Your body has taken a massive hit and while your blood results look fine, it still has a lot of recuperating, repair and rest ahead. The worst thing you can do is push it too hard, that was my problem early on. There's also the meds. Both the Cytoxan and the Pred will slow you down. Remember that the Cytoxan is toxic and while it is wonderful for knocking your immune system on the head, it takes its toll on other parts of you as well. Rest and a good diet and more rest is the main thing you can 'actively' do to keep the recovery process humming along. Unfortunately, patience is key

As for working, I was back at work almost six months after diagnosis and three months after leaving hospital. That's me though and you'll find that everyone is different. You may take a longer time or not but however long you take to feel more human is how long it's going to take....geez I nag a lot....sorry....oh, by the way, are you drinking heaps of water after taking cytoxan? You need to flush your bladder out after taking the stuff.

**Barbara1966** · 08-11-2010, 09:57 AM

Sean
I was out of work for 10 months the first 8 months I was not able to do anything, I lost some of my hearing and my lungs were involved. My biggest problems were coughing and walking - I would get out of breath just walking couple hundred yards and forget climbing steps. It took me forever to clean my house, just a simple task would require too much energy from me that I did not have. I stayed on cytoxen for a year. For the last four months I feel great but I still have days where it feels like I've no energy but that's getting to be less and less.

Stay positive will get better.

Barb

**Sangye** · 08-11-2010, 12:03 PM

Four years later and I'm still nowhere near being able to work again. I was in terrible shape at diagnosis and then immediately developed tons of blood clots. And many complications since. We're all different.

Andrew has it right about the ctx wiping out your energy. It puts out the Wegs fire but it costs the body a lot to do it. Wegs uses up a lot of resources when it's active. Rest and take time to let your body heal.

**brocky99** · 08-11-2010, 10:40 PM

I have been out of work for just over 2 years I was just thinking about working part time again end of 2009 but then had a flare in jan 2010 so have had to learn to rest more etc. As Jack and plenty others as said on this forum u will probably never feel how u used to feel ever again and we have to find a new normal. I was very tired on first diagnosis and breathless. I still am tired and take a nap every afternoon and i still cant climb stairs without weasing or go shopping without taking a rest and a sit down every so often. This used to really get to me because I am only 34 and was always doing something before i got diagnosed, but now i have accepted that i cant run round like an idiot and realise my new normal includes plenty of rest.