Shortness of breath

[jmmilliorn]

I'm new to the forum, and I've read a lot of the existing posts, but I want to get feedback specifically about shortness of breath. (SOB).

I was diagnosed in Jan. 2011 at Cleveland Clinic by Dr. A. Villa-Forte and put on Methotrexate. I took it until April 23rd when I developed a BAD rash all over my torso. During the months on Metho, i felt progressively worse and experienced a major blood clot in my right leg which resulted in a week's hospitalization and the addition of blood thinners to my 17 other medications. I also lost strength, felt tired, gained weight on Prednisone (40lbs so far), lost interest in everything and had to give up working on my ranch. I have had a chronic cough since Jan that took much of my energy, but the most irritating symptom was the shortness of breath. Just walking to the barn or carrying in one sack of groceries leaves me panting like I've been running. Forget stairs! They recently discovered a 1/2 inch nodule in my right lung that wasn't there in Sept. I spent another week in the C.C. hospital starting 4/23 and they determined that I was having a toxic reaction to Metho. I ended the week with an infusion of Rituximab and went home. They are going to check the lung in 3 months to see what is happening there. No one expects cancer. I've spent six weeks with the oncologist prior to my diagnosis during the "treat the symptoms" phase of not knowing what was wrong with me prior to my diagnosis. I feel some better already on the Rituximab and will have my 2nd infusion this week.

But, I am still extremely SOB. It is my biggest irritation. I can't walk off the steroid fat. I can't work around the ranch, and many normal activities are eliminated. We can't travel. I can't even push the cart at the grocery. I just have to sit with the lame and old at the front of the store. I was VERY active just a few months ago! I'm not ready for a handicapped placard. I don't know if the SOB is from the WG, the steroids or some other medication. None of the doctors have given me a good explanation of the SOB and don't seem to know in general why.

I'd like to know from the experiences of the forum what the general consensus is on SOB, and if anyone can tell me what to expect going forward with the Rituximab. Apparently I got diagnosed before any organs were damaged, but these last several months have really beaten me down physically and emotionally. The Rituximab infusion is the first glimmer of hope I've had since last August when I first got sick.

Thanks in advance for your input. The forum has already given me a lot of insight into WG.

[Kathie28]

Did they check your lungs for a blood clot? I just got out of the hospital for a blood clot that started breaking off from my leg and traveled to my lungs and the only real symptom I was having was shortness of breath.
If they haven't looked for clots you should get this done with your history! It can't wait a month it can kill you. They look for it by doing a CAT scan of your lungs with contrast. I am sure it can be many things with Wegners but I would want this checked right away. I'm still having to deal with the shortness of breath but it is getting a bit better.

[jmmilliorn]

Thanks for the quick reply Kathie. Yes. I already had the blood clot in the leg when I went to the CC end of April and I was on blood thinners--Coumadin out of the hospital. Heparin in the hospital and then Lovenox until I could get back on Coumadin. They didn't see anything except the nodule which they suspect is a granuloma. They decided NOT to do a needle biopsy of the nodule while I was in the hospital since I was already on chemo and they didn't want to risk deflating a lung or introducing an infection. The pulmonologists and breathing therapy people all offered different opinions about the SOB--asthma symptoms, rapid prednisone weight gain, the WG itself. I still don't know. I'm afraid it won't get better. I'm better since the Rituximab, but the SOB isn't.

[NicShaf]

As long as you know it's not a blood clot...I also had a nodule in my lung at the time of dx, I actually had 3 in my right lung. It took me a while to get used to going up the stairs at work, I took the elevator for my first 3 weeks back. As the nodules healed, and I slowly started moving more, the shortness of breath became less and less, and now I have minumal SOB with walking at an exercise pace. I also agree that Preds and weight gain makes it harder to do things without SOB. I've put on about 30 lovely prednisone pounds

[jmmilliorn]

Thanks Nicole. It really helps to know that it isn't necessarily permanent. Did they say what the nodules were? Granulomas? I'm tapering off the steroids now. Down from 60 mg/day to only 17.5 mg. On my way to 10mg.

[NicShaf]

I had a lung biopsy done in December, I had one nodule close the the lining of my lung and they took the biopsy from that one. They never said what they actually were, I don't think they know for sure, but they did not find any Granulomas in the sample, however there were signs of inflammation consistant with Wegs.
I'm not too far behind you in my Pred taper, I started at 60mg in December when I was dx, I'm at 20mg now, and in 2 weeks I'll be tapering to 17.5.
Good luck, I hope things start improving for you

[Sangye]

Hi Mike, glad you were finally able to post! Welcome to the group. I'm really happy to know you're being treated at CC.

Since the disease is still active enough to produce a nodule I suspect you have some level of inflammation in there as well. I'm on rtx and when it barely begins to wear off my lungs start to feel inflamed and my usual sob is noticeably worse.

I understand feeling beaten down physically and emotionally. Like you I was extremely strong and fit before this happened. I've had this since 2005 and have made very little progress since I began treatment in 2006. The best advice I can give you is to not look too far down the road. Focus on the present moment. I know it sounds cliche but Wegs can change on a dime--for better or for worse. Be grateful for the many complications you don't have, and don't waste time worrying about what might happen. Rtx is a great drug and you are fortunate to be feeling better after just one infusion. That bodes well for you.

Like anyone diagnosed with a serious illness you will go through a grieving process and have to adapt in ways that you're not comfortable with. I hope that you start to feel better and can get your old life back quickly.

[mama2005]

Hi, I am also treated at CC but with Dr. Hoffman. I was also having shortness of breath and he ran a chest scan and a trache scope. they found i was having trouble breathing because my trache and throat was closing.

[jmmilliorn]

While I was at CC the last week of April they did those same two tests to me, too. They didn't find anything except some inflammation/redness. I have had a chronic cough since Jan. I just thought it was sinus drainage since i was coughing up what look like drainage, (especially upon waking) but now I think the cough is a WG symptom that has only gotten better with the Rituximab. I'm still coughing, but less. While on the Metho for four months the cough raged. I'd have coughing fits that lasted until I either threw up trying to cough, or just got too weak to try. My ribs hurt from coughing and I haven't heard my natural voice for months due to varying degrees of hoarseness.

[marta]

Hey J. Mike,

My gut reaction is that once the RTX starts to do it's magic, your SOB will go away (that's a great play on words ) When I was first diagnosed and when I had my flare I had huge issues with SOB. I remember coming out of the hospital after my flare last fall and clearing the frost off the windows of my car (you wouldn't know about that in Texas, but it's normally a pretty light, mundane task) and feeling like I had just ran a marathon. I was so short of breath that I was staggering like a drunk person. So I think that it might be associated with disease activity and once that subsided so will the SOB, especially if they've eliminated all the other worse things it could be.

Best of luck and welcome to this little oasis of sanity for Weggies and Wegener's patients who don't like to be called Weggies (... a rose by any other name....)