New WG Diagnosis

[norcalian]

Hi All,

I was diagnosed with WG about three weeks ago while in the hospital. Although, like many on this forum, I think it started much earlier. I've always had seasonal allergies, but a couple of years ago I became congested year round. Nothing really helped...and frankly, it wasn't bad enough that I really pressed it much. In January of this year I started having middle ear problems. Fullness and a lot of hearing loss...especially in my left ear. I started meeting with an ENT specialist, got a CT Scan of my ear and was told that I had a cyst in my middle ear. I was suppose to meet with a surgical specialist...but before I could I started getting sick. It started with a fever, cough and some pretty sever joint pain. My GP, who is really good, immediately referred me for tests and and a chest Xray. The Xray came back with some spots. So my GP ordered a CT scan on my chest which found multiple binary pulmonary nodules...one almost an inch in diameter.

I was immediately referred to a pulmonary specialist who diagnosed me with Valley Fever (I live in California - it's a lot more common out here and in the southwest). I was put on anti-fungals. After a week I just kept getting worse...loosing a lot weight, feeling miserable. At my follow-up, my pulmonologist took one look at me and admitted me to the hospital. At first they thought I had TB and put me into isolation (kind of funny to watch how these particular nurses reacted to me thinking I had TB). Finally, the attending pulmonologist came in to see me and said "You've got to have Wegener's". He ran the tests, did a bronch scope and it was confirmed with the rheumatologist. I spent a week in the hospital (I was lucky it was only a week).

At the time my Wegener's only involved my lungs, joints, sinuses and ears. I was put on high doses of prednisone in the hospital and started my first infusion on Rituxan. Out of the hospital I am still on a lot of prednisone (80mg/day - I'm a pretty big guy), finishing my Rituxan treatments (last one is next week) and am taking 150mg of Imuran a day (plus all the other stuff I take to manage the side-effects). When I was in the hospital there was no renal involvement...but since being home, my protein clearance levels have increased to indicate that there is now inflammation in my kidneys. My Creatinine levels are solid and stable and my CRP is back to normal. But my Rheumatologist (who I really like and have an immense amount of confidence in) says that if my protein clearance levels don't improve or get worse that he will take me off the Imuran and put my on oral cytoxin...which has me concerned.

A bit of personal info about me...just had my 36th birthday. I'm married and a father of 4. I work in education. This whole thing has really been a blow on me and my family. Recovery so far has been a bit rough...I feel weak all the time. I'm really glad that there is a community of us to talk and exchange information and vent with. I'm looking forward to participating. Any thoughts, comments, advice, warning, etc are most welcome. And if anyone else is from the San Francisco Bay Area - or knows of additional resources out here, please give a shout out. Thanks!

[Chris G]

Welcome Norcalian. You will find many people here with similar experiences, who will offer great advice. My wg is localized to head and neck, so I don't have a lot to offer where lungs and joints are concerned. But I'm happy to hear they started you on rtx. Many will be eager to hear how that works for you, as I believe that most of those here who had lung involvement were started first on cytoxan. Yes, feel free to vent all you want!

[Kathie28]

Welcome to the group!

I work in education as well which certainly adds on another battle. Now that I am on all those immune suppresent drugs it is so hard not to get sick. I had the Rituxin as well and now I am on methotrexate. My labs improved a lot after the Rituxin. I have both kidney and lung involvement. My kidneys have improved but I continue to have elevated protein and blood. I can't comment on the Cytoxin so far I haven't had to go there but I know it has helped a lot of people. I do fear it though. I wish you the all the best and keep the hand sanitizer handy at school. At least summer is almost here!!

[norcalian]

Welcome to the group!

I work in education as well which certainly adds on another battle. Now that I am on all those immune suppresent drugs it is so hard not to get sick. I had the Rituxin as well and now I am on methotrexate. My labs improved a lot after the Rituxin. I have both kidney and lung involvement. My kidneys have improved but I continue to have elevated protein and blood. I can't comment on the Cytoxin so far I haven't had to go there but I know it has helped a lot of people. I do fear it though. I wish you the all the best and keep the hand sanitizer handy at school. At least summer is almost here!!

I am away from work right now. it will be interesting to see how things will be in the Fall depending on what medication I'm on (or how much prednisone I am still taking). How long after you finished your rituxin treatments did you start to see improvements?

[Jack]

It sounds like your diagnosis was about as fast as could be expected and you should have avoided most of the permanent damage that is often caused in the early stages. If your doctors know what they are doing, you should now be on the path to making a reasonable recovery. Don't worry too much about switching to ctx, it is the drug most of us have experienced and the side effects and how to avoid them are well understood. It has proved itself to be a very effective treatment in most cases.

[Sangye]

Hi norcalian, welcome to the group. I'm so sorry to hear that you've been diagnosed with Wegs but I'm glad you found our group. The single most important factor is to be under the care of a Wegs specialist. I know you are happy with your doc right now. Things aren't too complicated at the moment, but with Wegs that can change on a dime and a regular doc will quickly find themselves in over their head. A regular rheumy is not skilled to deal with the complexities of Wegs.

There is a new Wegs specialist in San Francisco-- Dr Sharon Chung. You can find her info here: Vasculitis Foundation Medical Consultants | Vasculitis Foundation

Also, this thread has info that will help you: http://www.wegeners-granulomatosis.c...need-know.html

[norcalian]

Thanks for the welcoming messages. I will definitely be on here looking for information as my treatment progresses/changes. I'll probably find out this week whether or not I will need to switch from 150 mg of Imuran a day to CTX. With my protein clearance raising over the past couple of weeks, I think my Reumy wants to give it one more week to see if the full dose of Imruan will knock it back to a more normal level...but with the way the numbers were going I'm guessing that they'll be the same or a bit worse...so I'm preparing myself for starting oral CTX...which will replace the Imuran. The thing I'm concerned about is becoming even more open to infection while on CTX...any thoughts about this? I can't use Bactrim because I'm allergic to sulpha antibiotics, so I'm wondering if anyone out there has experience with all this? What other meds are out there to help you avoid nasty infections?

[Daggar]

hello norcalian,

Pentamidine is one alternative to Bactrim-sulpha antibiotics to avoid pneumonia if you don't have a choice due to allergies.

As for infections and such the doctors will be watching your blood counts closely and should be telling you when you really need to avoid risks outside the normal recommendations of avoiding anyone who has a cold or viral issue.

Our daughter Holly went back to school in January while on ctx and she did wear a medical mask for a bit until her numbers improved and fellow students/teachers were made aware of her condition and her need to avoid those who were sick.

Quite scarey at first but everything went well and the mask came off fairly quickly. She did experience one cold but her blood counts were fairly strong at that point and it ran its course pretty much the same as pre-WG.

She is now scheduled to switch to Imuran in a month.

One thing to remember if you do have to do ctx - drink, drink, drink.... water that is! The drug is very toxic if it sits in your bladder so make sure you have lots of water with you at all times.

[jmmilliorn]

Welcome Norcalian. You came to the right place. Good info here from many who have been there. I too am experiencing the weakness--even after the RTX infusions. From what I heard, you don't get your strength back right away, even if the RTX helps the WG symptoms. Do your thighs feel like jello? Are you light headed, too. I am. I have anemia with my WG. I also spent a week in isolation in the hospital when my symptoms sent me there the last time. The lab techs wouldn't do a CT scan of my lung until it was proven that I didn't have TB. I really had no symptoms of TB at all except a chronic cough. (mine was dry). They did discover a nodule in my lungs when they finally did the scan. I have finished my RTX infusions and will be taking Azathioprine for maintenance. I'm anxious to get my strength back and get off the prednisone. Gained 40 lbs since Jan.

[norcalian]

I also spent a week in isolation in the hospital when my symptoms sent me there the last time. The lab techs wouldn't do a CT scan of my lung until it was proven that I didn't have TB. I really had no symptoms of TB at all except a chronic cough. (mine was dry). They did discover a nodule in my lungs when they finally did the scan.

It's interesting to watch how people react to TB. When I was in the ER I had this nurse that would run in and out of the room. I would have to quickly yell questions at him as he was scurrying out of the room. On the plus side, when they moved me up to the hospital for the majority of the stay, they put me in an isolation room which was a really nice corner room looking at the green hills (Northern California's really green this time of year). So that was good.

I will look into contacting Dr. Chung at UCSF if the need arises. I have Kaiser (which might not be as familiar to most of you outside of California - but it's huge here). So she definitely would not be in my network...but my Doctor is sort of the main Rheumy guy here and has been working with Wegener's for over 30 years. And I think he's pretty good about consulting with other doctors as he's talked about doctors that he works with from UCLA to UCSF and Stanford. One thing about Kaiser is that they have been treating with Rituxin for the past 5 years (the organization is run by doctors rather than shareholders - which I think cuts through a lot of that red tape about payment). They were the only HMO that would cover it before it was approved by the FDA. It sounds like the rheumatology dept. pride themselves on being on the cutting edge of treatment. But of course if I have any doubts, I have this site and I have all of you and I can always try calling Dr. Chung. Especially if things get weird with this disease, as it sounds like it can (like I mentioned...my kidney involvement started after I was put on high doses on prednisone and Imuran). When I was told in the hospital that I had Wegener's my first thought was "thank heavens it's not cancer." I really didn't know anything about the disease. It's hard not knowing what to expect.