New to the site

[jetodd238]

Hello, my name is Joyce. I was diagnosed with wegeners after a month in the hospital in 2013. I think they tested for everything possible when they found growths in my lungs. After being diagnosed my rheumatologist in Seattle out me on 6 infusion treatments with rtx and I was on methotrexate until I moved to las Vegas last year. Getting a new job and setting up a doctor took longer than expected and after not taking the methotrexate for 9 months I began losing my voice in December. Even with my history ny primary I set up here didn't think it was my wegeners acting up so I took it upon myself to see an ent I trusted. He recommended a throat doctor and this last Monday I had surgery to remove the growths that were around my vocal chords and in to my larynx. I've seen a rheumatologist it here twice and I don't think he's treated many with the disease because the first drug he brought up was cytoxin. I'm 28 and I didn't want to do that in 2013 because of the whole infertility. At this point after surgery I decided that maybe a baby shouldn't be on the top of my list, instead getting this under control should be. Unfortunately I now have mixed feelings as my dr gas recommended me to get a second opinion from ucla or mayo clinic. Im glad I found this forum, I'm hoping there might be some feedback because I just don't know what to do at this point. Any other las vegans out there that found better treatment?

[Pete]

Hi Joyce,

Welcome to the Forum! You'll find lots of support, experience, advice, and empathy from the folks here.

At least have your local doc consult with someone at Mayo. They and Cleveland Clinic are among the best in treating our dumb disease. If you want lists of specialists, go to the Vasculitis Foundation or Vasculitis Patient Advisory Network websites.

Good luck!

[drz]

I would see the best expert you can arrange to see that can address your concerns and assess your situation and have them consult with your local treating doctors. The two web sites listed will help you find some good specialists. Thousands of people fly to Mayo every week from all over the world so going some where to see an expert, you are only limited by time and money, but a drive to Utah or California might cost as much as a flight to some experts across the country.

[annekat]

Welcome to the forum, and this is the best place to be for info, support, and friendship from people who've been there and really do care and understand. I don't know how I'd have managed without it the last 4 years. It may be true that your rheumy hasn't a lot of WG experience and you might do well to find a specialist. However, aside from the possible fertility issue, I don't think that his suggesting cytoxan is necessarily wrong or shows inexperience, and some of the top WG docs may still do that. In extreme cases, it tends to work faster than RTX, and a person can be switched to RTX later or even around the same time as getting a good dose of CTX. There are a variety of ways docs approach this. And we've read in the archives here about some women who've had babies after CTX, so you might try a search on that, though I understand your concern. Also, since your doc wisely suggested another opinion, there's the option of him consulting for free with known specialists who are listed here: VF Medical Consultants . One of those is at U. of Utah and one is at UC San Francisco, although I think you could consult with someone elsewhere like Mayo or the Cleveland Clinic as well. I don't know how much of a trip it would be to SF or SLC, but I'm pretty sure it would be closer than for me here in Olympia, WA.

Besides the Vasculitis Foundation, VPAN was also mentioned (Vasculitis Patients Advocacy Network), but unfortunately, that site has been recently taken down, and I can't give the reasons, unless something has changed within the last couple of days. I hope it gets back up again.

In any case, I hope you'll join in the discussions, ask any questions, blow off steam, whatever is needed.... we are here for all of that, and I hope you'll keep us posted on your progress.

[Mas78]

You have been given some pretty good advice already. It never hurts to get a 2nd opinion before taking a drug like cytoxan, but if it's truly needed it's better than the alternative.
One little bit of advice I have is to get a copy of your medical records from your old doctors. I've found out the hard way that they are only required to keep them for 7 years after release of care. With you relocating I would hate for some important files dissappear for you.

[im so blessed]

Hi Joyce! I would say you need to see a dr that is familiar with wg. Im curios about your surgery. Did they tell you what they removed? I have a tracheal stenosis and i too, lost my voice. It is part of the way wegeners manifests itself. This disease is not one that can be ignored tho. Going 9 months without meds and not being monitored sounds risky. But it sounds like you are headed in the right direction. I had 4 months of cytoxen 14 years ago. I have had 2 children since that. Tell your dr all your concerns. Maybe you need rituxan again. Welcome tho! Glad your here. You will get lots of support! Maybe im misunderstanding the situation some. Please excuse me if i came across harshly. You sound like you're on the ball!

[mishb]

Hi Joyce and welcome to the best forum on the globe - if you have WG that is.
Actually, I'm pretty biased and would like to think that you can't find any people on other forums, that are better than the ones on here

Being from Australia I can't really tell you what the hospitals are like over there but I have heard great things about Mayo (and the others)
It definitely can't hurt to get one of the big specialists (one that has seen hundreds of WG patients) to check things out.

[Dirty Don]

Welcome Joyce, glad you're finding treatment and responding. Just wanna say that you're 4 hours from Phoenix now and Mayo has a hospital/clinics/research here. I have been under their wing since just after my dx which they also performed. Life is better with them and they have experienced WG docs who know their business. If you can get your docs to at least talk with Mayo and/or make the trip yourself once every 3 mos or as needed, it may make your life a bit different. Best to you.

[Debbie C]

Hi Joyce and welcome (unfortunately ) I w on the VF website and it looks like they have a Cleveland Clinic in Vega. I did not research to see what drs. are there but I am sure you can get a consult with your dr. Or lie Don said you are not far from Phoenix. But you definately need an experienced. Good luck and let us know how things go

[jetodd238]

I wanted to say thank you to everyone that kept my hopes high. I managed to get a few names from my primary and found a great rheumy out here in las Vegas. In case others are in the area her name is Dr Elham Taherian. She took one look at my blood work and new how to atart my treatment back up. I'm going in for another RTX round, and she started me on 60mg of steroids. Hopefully I'll be down to 30 in a month. Im not excited about the high dose and RTX because last time my blood sugars skyrocketed during treatment because of the steroids during the treatment as well. But ill just be more careful this time around. Hope this was helpful to someone.

Im still thinking of going to Phoenix after my treatment but thats going to require a dip in my savings. So ill see. :-)