Need of Wegener's "Level Setting"

I was diagnosed with WG in June of this year, but as far as I can tell I've had it most of my life. My symptoms are largely minimized now but included: canker sores - up to 100 at a time, could not close my jaw, paralysis, double vision, unbelievable pain in my limgs, fever, chest pains, inability to breathe... yada yada yada, blah blah blah. (sorry but I feel like having this tattood on my forehead because I have to go over it again and again with insurance, healthcare workers, strangers, people at church, family etc.) YES, I am in a bad mood today! :-)

I have had MRI, Echo, and blood work up the wazoo and there is no apparent organ damage. My kidneys do not seem to be involved.

However I am still sicker than a dog. I have sharp pains intermittently, profuse sweating, occasional fevers, big time fatigue, nausea. I am getting better however. My lab tests show that I am continuing to improve. My SED was 5 and then 9, down from about 100.

Here are my concerns:

+ I am on Prednisone (down to 20 from 70mg), Methotrexate and Bactrim. webmd shows a potentially fatal interaction between methotrexate and bactrim, so I stopped taking the bactrim this week and my heart pain and shortness of breath have more or less cleared up.

+ I am seriously overweight but fortunately methotrexate has all but taken away my appetite. I am focusing on fruits, veggies and lean protein like chicken. Presumably this is OK.

+ I am trying to walk 30 minutes a day on our treadmill and this wipes me out for the day. Is this "normal?" Will exercise hurt me? I'm worried about the chest pains and shortness of breath.

+ Can I lift weights?

+ I have been out of work for about four months and can't currently imagine getting back to work any time soon. riding in the car is a big, big deal. I drove for six hours this weekend, which was a really cool accomplishment but left me totally wiped out for two days afterwards. Is this "normal?"



Thanks! Any help is appreciated

MM - You have certainly been through the ringer! It's not uncommon for WG patients to complain of being symptomatic for years, with no relief because people didn't know what they had.

As to whether what you are speaking about will constitute your new normal, I can only pass on what I heard at the Vasculitis Foundation symposium, which should be very encouraging to us all. With the proper treatment, most WG patients can reach remission. "With the right treatment" is a huge part of that equation. I see that you are in MN...I wonder if you are being treated at Mayo. Particularly being so sick, and having had the disease for so long, I believe (and others will chime as well) that you need to be in the hands of a real professional who sees many WG cases a year (my ENT saw 12 in one day just to give you an idea). Remission means essentially, the absence of all symptoms. I was not nearly as sick as you, but I did have to have surgery to repair my windpipe. I still work and do the regular things that people do. Many on these boards may have gone through periods of disability and been able to regain much of their former mobility and activity. I was able to achieve remission in roughly six month on a regimen of methotrexate alone (this is unusual). Many people I met at the symposium remained symptom free for decades before any kind of relapse (and I'm sure some do not have relapses). It was not uncommon to see medication free wg patients.

There are some people who do not achieve remission, but the researchers seem to believe that this is more common than it needs to be mainly due to the fact that many docs have no idea of what they are doing when they are treating wegs.

Hi MinneapolisMark,
Welcome to the group. It's great that you found us so soon after diagnosis. Don't worry about being in a bad mood-- we all understand that one!

I agree with JanW that getting care at Mayo should be on your To Do list this week. Here's some info that will also help you: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

You mentioned some diagnostic tests, but didn't say if you've had a chest CT. That's the imaging test of choice to evaluate your lungs. MRI for lungs is not sufficient. Shortness of breath and chest pain indicates lung and/ or heart issues that must be addressed.

I think it's great that you can exercise, but you shouldn't be exercising at an intensity that flattens you for the rest of the day. That's too much. Go for time, not speed or intensity (eg inclines). If you're going slow for 30 minutes and it's exhausting you, then try 20 min.

Pred predisposes the tendons and ligaments to rupture, so be careful with weight-lifting. I suggest you use only low weights with more repetition, rather than large weights. It's VERY easy to rupture connective tissue on pred and very difficult to heal it.

Thanks folks! This really helps. It really helps just to have somebody get what I am talking about.

Depending on involvement, and honestly I have a pretty mild case in comparison to many here, I find that anything aerobic really wipes me out. I actually have issues with shortness of breath and I feel like I'm getting torn in half, but I'm not sure how much of that is because my involvment is tracheal versus general wegs issues. And I'd mirror what others have said on the weight lifting, I actually have done much better with light weights and more repetitions, I was doing heavier stuff out of ignorance before I knew what I was in for and it really caused me a great deal of pain that was not necessary.

Here is a good overview of Wegener's from a clinical perspective, from Walter Reed Medical Center.

Wegener Granulomatosis: Treatment & Medication - eMedicine Rheumatology

I would suggest you get an echocardiogram to evaluate your heart function. If you are having chest pains and shortness of breath with extertion it could indicate your heart is affected. Either from the vasculitis primary or secondary to increase pressure in your lung vascular bed.
I had an echo, a high resolution CT of lungs, a CT of sinuses and a bronchoscope to evaluate tracheal opening at the beginning of my diagnosis- all good baseline information to get.
Good luck!

Great article, Mark. It's actually accurate, unlike much of what we see on the internet!

Hi MinneapolisMark, welcome to the forum... I have been lifting weights and it certainly seem to help, slow but surely. I incline yje treadmill to 12deg but walk at 4MPH for 20 mins. Yeah, I sweat a lot. Then I do weights for roughly more than 1 hour... I do this 3 times a week, cant do more than that...

Hope you feel better soon...

Thanks, Mark, that's a great link you have supplied for us. Ron

Very informative info!