View Full Version : just out of hospital with new meds

08-18-2008, 02:58 PM
I was diagnosed with WG in May 2007 and have been treated with Cytoxan and Prednisone until 4 days ago when my Doc called to meet him at the hospital because my lungs were so inflamed. They treated me with 1000 mg of Prednisone for each of three days; a Rituximab infusion; and a Cytoxan infusion. I am now back home but my hands, feet, face are really swollen and sore. I am having strange mood swings as well. Hard to keep a positive attitude..... Can/does this disease go into remission? Is it ever possible that it can go into remission and not come back for a long time, if ever? Guess I just need some encouragement..........

08-18-2008, 09:06 PM
Hi Davey,

Yes, it does and it can. I don't know any statistics, but I get the sense that, perhaps even for the majority, WG is a 'one hit wonder' and that after initial successful treatment, it goes away and stays away. Some people even come off all meds completely and never have another flare. For some of us, though, it never really seems to go away completely. Even so, in over thirty years I've had some long long periods of 'remission' (although I've never got off meds), the longest being nearly ten years. In that time I've had three major episodes and any number of mild flares, but it really is worth working at. I've just turned 40 and I work full time and have a great life.

That said, I reckon it's always best to assume that you will get 'cured', and that your life can return completely to what it was (or very nearly).

Stick with it. It's really awful when it's going on and I know all too well what it feels like when the docs are filling you with what seems like every drug they can think of. When I was about 20, I remember a time when I was getting IV pred, oral cyclo, IV cyclo and Immuran all at once and my doctor sat on my bed and said "I'm sorry, there's simply nothing more we can give you." Pretty depressing, but I stuck with it and, as though out of nothing, the WG just seemed to give up, and very slowly it went away.

I just let myself get really really really really angry with it. Stick with it Davey. Sending you positive vibe stuff,

Sarah x

08-19-2008, 07:57 AM
Hey there Davey...
I was dignosed in 2003 and am not in remission yet. That doesn't mean I feel like poo, it's quite the opposite. I feel fine, pretty much the same as I did prior to getting sick (well, as near as I can remember). I lead a normal life except that I take a few pills each morning and see the quack every few months for a checkup.

What I'm saying is that if you pin your hopes on 'remission', it could be a long wait. Work on feeling better and you'll get better results :D Yes, many of us do go into remission and sometimes it comes back but having remission as a goal is counterproductive in my opinion. Take small steps towards feeling better and even just feeling happy and smiling and you'll make progress.

Feel free to post here if you need encouragement/advice or just want to vent. I hope you start feeling better soon :)

08-19-2008, 11:26 AM
Thanks so much for the encouragement! I really do try to look at it that way.....I know there are no guarantees in life, but boy, some days we need other people to remind us that life is mostly good despite a few setbacks. Thanks again!

09-25-2008, 10:43 PM
I used to have occurrences of Wegener's all the time until my medication was changed to Micophenolic acid and Prednisolone (from Cyclosporin and Prednisolone). I have now been in remission for around eight years. However, I'm not exactly fit and healthy! I live with the legacy of 20 years of Wegener's damage and drug side effects (mainly from prednisolone) and I probably look 15 years older than I am.

09-26-2008, 06:27 PM
<b>I probably look 15 years older than I am.</b>

Gah. A couple of years ago at a party one of my oldest brother's friends mistook me for my mother. My brother didn't seem to understand my epic sulk!

09-28-2008, 07:42 PM
I was diagnosed 11 1/2 years ago at the age of 19, and my case was very severe (life support, plasmapheresis (sp?) and all). I was on Prednisone for 6 months and Leukeran for 1 year. I have been in remission and off all WG related meds since I took the last chemo-pill. I can honestly say I'm not too bothered by the WG in my everyday life.

However, I HAVE had a bunch of medical problems, and I'm not sure if any are related to what happened all those years ago. I've had gall stones w/ gb removal, have Crohn's like symptoms, had a blood clot in my lung, melanoma, pleurisy and shingles. Like I said, don't know if there's a connection, or if I've just been cursed with a lousy health.........!

But yes, you CAN go in remission, and so far I've stayed there. My doctors still can't quite agree on whether I have WG or MPA, but WG was my original diagnosis. I was told the first 7 years are the critical ones. If you go that long w/o relapsing, there's a bigger chance it won't come back, but I guess nothing can be guaranteed.

BTW, does anyone know the numbers of WG patients in the US? In Denmark there's only about 200, but there's also only 5,4 million people in the entire country, so I assume the number is considerably higher over here :o)

09-29-2008, 03:46 AM
I think there is still a great deal unknown about the effects of Wegener's. Although I have not recently had a relapse, I have had constant medical problems since being diagnosed (20 years ago). It seems that there is always something new to be investigated, puzzle everyone, then, with luck, fade away. Only to be replaced by something else.
Many of these problems may well be side effects of all the medication I have to take, but I suspect that many are Wegener's symptoms. My latest problem is weight loss and considerable muscle loss in my legs. A real nuisance because it is making walking very painful, but none of the tests to date have indicated the cause of the problem.

10-01-2008, 02:27 AM
It's interesting to see two others posting in this thread who live in my state. Maikeedio, I'm in Kitsap County, where we have a terrible shortage of Rheumys. The only Rheumy who practices here isn't taking new patients. I'm having to wait to see a guy with a practice in Olympia who comes to Bremerton twice a month. It's quite a pain (literally and figuratively).

Jack, are you seeing someone at U of W?

10-01-2008, 05:26 AM
My consultant is Dr. Adu at the Queen Elizabeth Medical Center here in Birmingham, England. He is head of the Renal Department, but has a special interest in auto immune disease and runs a research clinic in conjunction with the Rhumatomatology Department. I'm lucky to be in a place where the doctors are interested in the condition and trying to learn more. I've had lots of students using me for their projects over the years!

10-01-2008, 08:52 AM
Oops! Sorry Jack, the question about U of W was for Davey. :D My ENT wants me to see a Rheumy at the U of W, but it's a bit of a trek for me to go there.

10-03-2008, 04:45 PM
Terry, I am seeing Dr Gardner at the UW as well as my rheumatologist here in Everett, WA. We decided a second opinion would be good and I am glad we did because he is an excellent physician (I believe it would be worth your trip). I also grew up in Kitsap County, in Port Orchard, and still have some family there (small world!). I don't personally know any one else with this disease, so it is interesting to me that a couple of members live in this area. Take care!

10-04-2008, 12:43 AM
Davey, small world indeed!! I live in Port Orchard - McCormick Woods. I work over in East P.O. at Kitsap Residences. We're a state-funded agency providing assisted, in-home living for adults with developmental disabilities. The Rheumy that I have the appointment with practices in Olympia and comes to Bremerton twice a month. There is only one Rheumy in all of Kitsap County, and he is not taking new patients, so if I don't like Dr. Choe (pronounced "Shay"), I'll have no choice but to go to UW because nobody's recommending anyone in Tacoma.

10-04-2008, 08:23 AM
Hello! My brother Joe owns a business in Port Orchard called Farmer George's Meats on Bethel Rd. and I have a niece with a hair salon off of Sedgewick Rd., plus another niece and uncle living in Manchester. My great niece goes to school at Christian Life Center (CLC). I went to school until 9th grade at EPO elementary and Marcus Whitman JH back in the 70's (yikes, I'm dating myself!) Anyway, hope you are feeling well and thanks for your reply!

10-04-2008, 10:52 AM
I shop at Farmer George's all the time! Best meat in town! I wish they sold fresh meat every day, but you can only get it on (I think) Thursday - Saturday. I tend to go there on Friday or Saturday, so I'm not positive about the Thursday part.

I hope you are feeling well too! I'm feeling poo-ish. I've been off Prednisone for about 2.5 weeks now, and my sinuses are already starting to swell up. At least Afrin is working, but I have to use it more often every day just to keep breathing. Eventually, it will quit working. So far, knock on wood, my knees haven't been bothering me too badly, but I can tell they're getting weaker.

10-04-2008, 11:10 AM
He does have a good meat shop; many of the recipes for sausage, etc. have been in our family for decades! Anyway, I have never been completely off of Prednisone and have taken doses as high as 80 mg. a day (right now I am on 40 mg.)with my lowest dose since diagnosis being 15 mg. My ENT claims that my sinus disease was the worst he has ever seen....I could not breathe, 85% clogged; my cartilage was eaten away and I am left with a "saddle-nose" deformity. I did have to have surgery for reliefe, however, there are a couple of things that he suggested that have helped me a lot with the sinuses. First, is a sinus-rinse kit called "Neil-Med" that you rinse your passages with 1-2 times per day. You can buy this at most drug stores. Make sure you follow directions exactly, though. I have been taking Bactrim (Septra) as a maintenence dose for 17 months to help with sinusitis and Wegener's in general. Also, an electric sinus steamer has helped (also found at drugstore). Of all that I have tried, the sinus rinse is the thing I could not live without! Hope that helps!

10-04-2008, 05:35 PM
Couple of things -

Afrin, or any of the nasal sprays - stay off them if you can! I got into big trouble using them, requiring more and more for less effect and the rebound became far worse than the original condition.

If you have nasal crusting / discharge, use any form you like of the Yoga practice "neti". Simply put, you flush your nose / sinus with salt water and it works a treat. I used to use a 50ml syringe, but there are more delicate neti pots available. It has been used for hundreds of years and can't harm you. Although it won't cure you it will give some relief.

10-22-2008, 07:09 AM
Jack, I tried nasal irrigation, and it turned out to be a disaster! The saline got trapped up inside my head and I couldn't breathe at all the whole night. So the doctor has me using a saline spray - much gentler process. Once they get me on Prednisone, I don't need Afrin but once or twice a day, but when I'm not taking it, the swelling is so bad I can't breathe. That leads to my ears bothering me, and it never ends.

09-30-2009, 05:19 PM
Terry, sorry it's been taking this long to respond. Bookmarked the page, and then kinda forgot it again (gotta love the memory loss that seems to follow Weggies, lol).
When I had insurance, I went to see Dr. Sunanda Uberoi; a rheumy who works for the medical pavilion at St. Francis in Federal Way. But it's not just rheumy's there's a shortage of; I had melanoma in april 07, and finding a (good) dermatologist with less than 3-4 months wait to check my skin, is almost mission impossible. Sigh..........