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Sangye
11-29-2008, 10:17 AM
I'm really glad I found this site. You're all so kind and supportive!

So here's my story. I came into Wegener's through the back door-- a completely atypical case. In January 2005 I fell hard on the ice, a real jolt to my spine. Two weeks later, I developed the first symptom : a persistent tendinitis in my Achilles tendon. Not so painful, but enough to keep me from hiking many miles a day along the beautiful mountain trails where I lived. This went on for 6 months.

One morning in June 2005, I awoke to find one thumb joint slightly swollen but unbelievably painful, like it had been crushed. I'm a chiropractor, so this got my attention. After a few days, it occurred in a 2nd joint on the same hand. Really quite scared by this point! X-rays were fine. After about a week, it went away, leaving the joints 100% like new.

Within a couple weeks, it happened again. I got bloodwork, expecting to see inflammation and probably RA, but it was all clear. This repeated for several months. After 4 months, it began in more and more joints, totally migratory. It wasn't just achy, it would take out the whole joint. I've had fractures with nothing near the pain. By January 2006, I was nearly crippled with pain as it settled in almost every joint.

At this point, I should explain that as a wholistic doctor, you couldn't get me to take drugs unless it was life or death. (Now there's some irony for ya!) I tested mildly positive for Lyme's disease, and my dog had just died of Lyme's right before I got sick. Curiously, we had almost identical symptoms. My wholistic docs treated me for Lyme's using natural remedies, with mixed results. Mostly I continued to go downhill, but since my bloodwork was still perfect, we had no idea which type of medical doc I should go to.

In April 2006, I got a minor cough. It persisted, and I was still going downhill. I caved and took antibiotics-- no change. Now my bloodwork began to show anemia, and I was getting pretty white. Over the next 3 months, I got whiter and weaker and could barely move from pain and difficulty breathing. My hemoglobin fell to about 50% of normal. I finally did a chest CT, and the radiologist said whatever it was, it was really bad! I got in to a pulmonologist the next day, who agreed, and ran a bunch of tests, including an ANCA. One week later, I showed up for my appointment gasping for breath. He closed his office and drove me to the ER, waving the just-in test results behind him. He gave me the 3-minute capsulized version of Wegener's in the car, and came to see me many times each day to reiterate the necessity of doing the treatment. Months later, a nurse told me he'd lost a patient to Wegener's just a few months before me, and was absolutely terrified I wouldn't do the treatment.

I got loaded up with 1000 mg prednisone, a couple pints of blood and put in the ICU for the first couple days. The 3rd day in the hospital, I went to stand up and had sudden, severe cramping in both calves. "Blood clots," I announced. The ultrasound was negative for clots, but the pain persisted for 3 weeks after I got home. It was crippling pain. I thought I would pass out. I was so weakened by the anemia, steroids, cyclo, etc... my acupuncturist said I had "no chi reserves left." Then one morning I insisted on going to the pulmonologist right away. It was like an alarm went off in my body. It turned out I was filled with blood clots throughout both legs and both lungs. Everywhere, uncountable. Back in the hospital to begin blood thinners. And my lungs were still hemorrhaging. Wanna see an ICU doctor turn pale? :D

About a month later, more clots! So I had to go off coumadin and stay on the daily blood thinner injections into the stomach. A VERY painful shot! (I'm still on them, but might be able to stop in December.) Lots of ER visits followed. Then 2 rounds of severe pneumonia, chronic leg ulcers and another Weird Whammy-- pseudotumor cerebri (elevated intracranial pressure). This was terrifying. If the pressure inside your head goes up, there's no way for the skull to expand, so it pushes your eyes out. Beginning with the optic nerves. Vision turns into a funhouse mirror. Then your body tries to eject the head by barfing it off with projectile barfing. Ahem. My friends said it was like witnessing an exorcism.

Shortly after that, I began treatment at Mayo Clinic, Arizona. I had stopped pred, cyclo, everything, because of the pneumonia. I started Cellcept, which is much milder than chemo--doesn't do the collateral damage. By last December, I got off 24-7 oxygen, after 19 months. This year has seen fewer crises--kidney stones, infection, a huge leg ulcer. But I still haven't worked in 2-1/2 years since I went in the hospital, and I still can't walk a grocery store.

I just moved to Maryland, and started at Johns Hopkins Vasculitis Center. They're incredible, and I'll share some pearls from them on another post. They know way more than the guys at Mayo, less fear. It's a little ray of hope. Nothing has improved for so long, that I've been losing hope. I've never met or read anything from someone else with Wegs until this site. Really opens one's eyes. I'm so happy for those of you who've had either a milder form or milder reactions to the drugs. And I'm so heartbroken for those of you who've had it much worse than me. Thanks for listening, 'cause I know you guys get it. :)

Luce
12-01-2008, 08:06 AM
Wow, what a scary time you've had with the Wegs. I was only diagnosed 6 weeks ago but can definitely sympathise with the arthritis type joint pain that really should have been the first alarm bell ringing in my head. Instead I chose to put it down to muscle ache from a cold or virus - although taking 10 minutes to get up off the sofa would suggest something more serious to most people, especially if you're only 25!

Oh and the blood thinner stomach injections are killers - I had them for about a week during my hospital stay and every one left a huge bruise that took nearly two weeks to heal.

I've only been a member here for two weeks or so but I've already come across some of the friendliest and most helpful people - so welcome!

Sangye
12-01-2008, 09:08 AM
Hi Luce,
I'm happy to meet you. Yeah, it was a whole different scene when I found out I'd have to stay on the injectible blood thinners (Lovenox), because that meant learning how to do it myself. If anyone is in that position and could use some tricks, I'm happy to help. Ever since, every time I've wound up in the hospital, the nurses never want to give the injection. They say it's the most brutal shot they give. They always say, "Well, since you're used to doing it yourself..." and they hand me the syringe. "Nuh-uh, no way," I tell them. If I've got to be in the hospital, I'm going to have the luxury of someone else doing the shot! Hurts less, and I don't have to find the courage to do it.

CarolG
12-04-2008, 06:44 AM
Wow! You've had quite a bout with WG. I can sympathize with you as most of us can. I've only been diagnosed for about 2 months and still having major issues. Just had my appt with my rheumy today and he says my CT shows my lung nodules are really shrinking so he wants to start to decrease my prednisone slowly. The problem is I'm still so short of breath with even short walks any where!!!! I still work, I just have to stop after maybe 100ft to catch my breath. He's sending me back to my pulmonologist for another pulmonary function test. Thinks it might be my blood clots in my lungs again. Yuck!!! YOu are so right about this website. Here everyone understands and it somehow makes it easier to face these ongoing problems when you can share them with people the "get it". Good luck and hang in there!

Sangye
12-04-2008, 08:50 AM
Hi Carol,
I'm pleased to meet you. Regarding still being so short of breath : I sure hope it's not more blood clots. Assuming it's not, remember that your lungs have been through the grinder, and they still have nodules in there interfering with their function. Lung tissue is extremely delicate. The disease itself really takes it out of them. I don't know which drugs you're on, but both pred and cytoxan made me very short of breath. The docs had no explanation. I later learned cytoxan is particularly hard on the lungs (go figure!). Though my lungs were full-blown hemorrhaging for 3 months before I got diagnosed (and still sounded clear to the listen!), I never developed any nodules. But like I said, I had to be on oxygen for 19 months, just for the beating my lungs took. They're still pretty flimsy! If you're at all anemic, being short of breath is to be expected. (Blood isn't carrying the normal oxygen level) Take good care.

Rodger
12-04-2008, 12:25 PM
It's look we're relative neighbors. You in Maryland and me in Northern Virginia. I haven't had to go to JHU yet, my rheumatologist here in town has been able to manage things. I'm his 13th patient in his career.

You're the only person I've encountered who was prescribed Cellcept. I was on it for about 9 months before my current flare-up put me back on cytoxan. It was much milder an experience for me (although you've had it much rougher with WG than me). I hope it continues to work for you. I'm holding onto the full bottle of meds I had refilled just before the switch back with hopes that I can back on Cellcept--it seems a shame to such a value medicine go to waste.

In any event I hope to continue to make progress.

Sangye
12-04-2008, 12:59 PM
Hi Neighbor,
Boy, am I sorry to hear you have to go back on cytoxan. I had such a bad time on it. I've only been to JHU once since I just moved here. At 11 am, I was the rheumatologist's 5th Wegener's patient. He explained things no one had, and had such a deeper understanding of the disease than any of my other docs (including Mayo Clinic), and didn't have the fear thing.

I was also my first rheumatologist's 13th patient. At the time I thought that was okay, didn't seem so bad. Until he missed one thing after another, didn't really understand the disease or the drugs, started blaming me for disease/drug complications, etc.... I'd sure recommend going to JHU if at all possible. Maybe just see what they have to say? There are so many other options. The JHU doc (Philip Seo) was appalled that they used cytoxan on me, even though my case was so bad. Who knew? If yours is milder yet, might be worth a trip.

Rodger
12-04-2008, 11:10 PM
Actually I'm very pleased with my doctor, and over all my progress has been great. I was never as sick as some of the people on the forum. He trained at Georgetown under a rheumatologist who studied with Gary Hoffmann when the first protocols we developed at NIH before he went to Cleveland Clinic. My doctor has consulted directly with people at Cleveland a couple of times on my case. Thats' what led to my trial on Cellcept.


Hi Neighbor,
Boy, am I sorry to hear you have to go back on cytoxan. I had such a bad time on it. I've only been to JHU once since I just moved here. At 11 am, I was the rheumatologist's 5th Wegener's patient. He explained things no one had, and had such a deeper understanding of the disease than any of my other docs (including Mayo Clinic), and didn't have the fear thing.

I was also my first rheumatologist's 13th patient. At the time I thought that was okay, didn't seem so bad. Until he missed one thing after another, didn't really understand the disease or the drugs, started blaming me for disease/drug complications, etc.... I'd sure recommend going to JHU if at all possible. Maybe just see what they have to say? There are so many other options. The JHU doc (Philip Seo) was appalled that they used cytoxan on me, even though my case was so bad. Who knew? If yours is milder yet, might be worth a trip.

Sangye
12-05-2008, 07:25 AM
Hi Rodger,
That's great to hear. Isn't it a relief to have a good doc? We are beyond fortunate.