New and Scared

[Christrd]

Hi, my name is Christian I am 27 and I was diagnosed with Wegeners in Sep of 09. They have me on the same meds as most of you guys. The problem or the reason why im scared because I am curently going to UCLA Harbor Regional Center because I was told it was the best, but no one there has ever treated Wegeners. For the past 5 months, all they do is take blood samples and send me on my way. When I do get to speak to a DR. all they ask is how the disease started and how im feeling. Im still on the same Meds since day one.
Is there anywere I can look or call to get a listing on Dr's who treat wegeners right?
Today was the last straw. Dr. forgot to give me the Rx for Cytoxin. Once I noticed the mistake on the Rx, I went back but it was too late, he wnt home for the day.
Can someone please help. Thanks.
Also Thank you to everyone who shares there experiences. I dont feel alone anymore.

[Sangye]

Hi Christian, I'm glad you found our group! You are right to be scared with that kind of non-treatment. Contact the VF and tell them your situation. They'll know exactly how to help you find a Wegs specialist.
Contact | Vasculitis Foundation

Please call them today if you get this. Take action asap on their recommendations. With Wegs you can't lose time.

[Jack]

Hi Christian and welcome.

You have every right to be concerned about your treatment. During the first six months, I would have expected you to have had numerous adjustments to your medication and have some idea about how the disease is progressing. Seeing someone who specialises in Vasculitis is essential! I'm sure someone more familiar with the centers in the US will be along soon to give you more advice. In the meantime, keep checking on the forum and perhaps tell us your story in the new members section. We would love to know more.

Edit: Sangye beat me to it!

[JanW]

Yes, Christian, please share your story. And definitely get on that site, like Sangye said. You will find the list of specialists and also lots of good information there (I watched some video on there that was terrific). For what it's worth, I live in the NYC area and was able to get in with one of the ENTs the VF lists on its website the very next day after my call, and he will be giving me surgery to fix my windpipe next week. Like Jack says, about the meds, I've only been diagnosed since the end of January, and have already had one med adjustment (taken off one) because of spiking liver enzymes. I was only on that medication for two weeks! My rheumo says that in cases like mine (I'm not disabled by this disease, have no kidney involvement and have symptoms that need to be corrected surgically -- windpipe and nose issues) not having the medication harm you is just as important as having the medication work. I'm actually surprised that the people at UCLA wouldn't be more "with it" and at least tap into consultants who work on this disease -- you're not at some community hospital there. I'm glad that you have found us.

[jola57]

Hi Christian and welcome. I am probably one of the very few that do not have a specialist but fortunately I am fully aware of the disease and with this forum can deal with my rheumy, but many times I feel like I am missing out. Please do get a specialist from the onset, do not stay with someone who forgets to give you your meds !!

[katwoman]

Hi Christian, welcome to the group and I am sorry to hear you are feeling scared with the treatment you are receiving - some of us can totally relate to what you are experiencing with doctors but as many have told me this is your life and so if you don't feel comfortable/safe with your doctors you have every right to seek other professional help, so I hope you follow up with the contact Sangye has given you.

Please let us know how you go!

kat

[Christrd]

Thank you guys. I feel much better knowing that im not alone in this. Sangye, thanks for the info. It was very helpfull. This morning, Dr. actually called me saying that he wants to start somthing insted of Cytoxin. I forgot the name of it but it has to be administerd through IV. Do any of you had this done before?

[JanW]

Maybe your doctor is talking about rituximab (rituxan) commonly referred to as rtx on this board? There were several studies that showed good results with WG patients taking this drug. What I find helpful is to take a notebook to my doctor to note down all of my drugs (both my ENT and rheumo spell/write their names on a piece of paper). I have found that my docs, because they know that they are dealing with people who may have to be on so many different types of meds or see so many different types of docs, would rather write stuff down. Being safe rather than sorry, and all that.

The other thing I wanted to mention is that the VF's annual vasculitis conference will be going on in Long Beach this year. Don't know how close that is to where you are, but great access to other patients, latest research, docs, etc. You should check out their website.

[Sangye]

Christian, yeah that must be rituxan/rituximab/rtx. They give it via long IVs, usually once a week for 4 weeks. Sometimes they do once a week every other week for only 2 IVs total. I did a round in October and am doing another round starting Wednesday. Look up the threads about Rituxan on here. Lots of useful info. It's WAY better than cytoxan.

[Christrd]

Thank you Jan and Sangye. It is Rituxan. I will be given my first doce Tomorrow morning. Twice a month total. Im glad that Rituxan is better then Cytoxin. The Treads here are extreamly usefull. My question is, is it painfull? I mean, why do I need Tylenol before they administer it? Well, thats what I was told.
Oh and Jan, I love like 5 min away from Long Beach so I will be getting some info to attend the conference. Thanks for the heads up