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Hope,
You've been on Cytoxan for 14 Months? And they are keeping you on it for another 6? I have somebody you should email and just ask questions if you want or give his information to your Doctor and have them contact him. His name is Dr. Paul Monarch and he is the Head of the Wegeners Research at BU. His contact information can be found here: Paul A. Monach » Medicine » Boston University He is the nicest Doctor and I have given his information to my Doctors. I would ask questions.......
GL
GL, he even LOOKS like a very nice guy! You don't think he'd mind email questions out of the blue from WG patients? Not that we'd flood him, but good to keep in mind.
I was on CTX for about a year, though tapered toward the end. I had significant lung issues, though not as bad as Hope's (real name Nicole? Not sure.) I felt I was OK as long as I drank lots of water, and my dose was even a bit low for my weight. The doc and and I felt it was working, the lung issues cleared up nicely... could have pursued RTX but I had bad insurance and we felt I was doing well. Now have been on MTX for 6 months or so; sinus crap is still hanging in there, though better.... and the MTX dose is pretty low, too. Also Bactrim and pred throughout this whole time.
Anyway, I'll keep Dr. Monarch in mind should I need to put a bug in my doc's ear about consulting with a specialist.
Annekat,
My wife found him and she emailed him several times and he always replied. He gave me permission to give his contact information to my Dr's as well in case they wanted to consult with him since he treats many more Wegeners Patients than they do. My Dr's all combined have maybe 3 Wegeners Patients so their knowledge in treating Wegeners is not going to be on the same par. My Doctors couldn't wait to get me off the Cytoxan because of the fact that if taken over long periods of time can cause cancer of the bladder. I don't expect people to flood him with questions but if you just give his information to your Dr's and say here is a specialist who's willing to answer 'your' questions then you will do yourself a great service and your doctor too.
In truth knowledge about our Disease is limited in scope and as we all know; the drugs to treat it can be counted on one hand. So Doctors that are willing to talk to each other and share knowledge is a plus for all of us as well as our Doctors....
GL
I agree with this and am grateful my treating doctor has consulted with his colleagues who are recognized experts. And he consults with my internist who treats me locally if needed. She has three Weg patients herself right now and she not any Weg expert but I like her for other issues and she consults with my Weg doctor if needed and he consults with the experts. I see both my expert and treating doctor every three or four months for evaluation and consultation and this has worked well for me. I know Phil has emailed the experts at times with his questions and I believe he has got quick responses. The ones listed at the Vasculitis Foundation seem to take their responsibility to consult very seriously and do a great job which is good for all of us. It is also encouraging to see the number of treatment centers with expertise in GPA expanding. Maybe in ten years everyone will have access to skilled treatment. Now if they can just improve the diagnostic skills of the rest of the doctors so we all can get treated earlier.Quote:
Originally Posted by gunnyl
Couldn't agree more, drz! A lot can happen in 10 years.
Yes, I've been on it since October 2011. While Weg's is currently in both lungs, apparently it was pretty bad once they diagnosed it. So far, it has not gotten worse but no real change in the spots on my lungs and surrounding lymph nodes. My doctor is at Vandy and has access to many specialists and brilliant minds. I feel this is ok for now since nothing is getting worse. My kidneys look good as does my sinuses. I drink plenty of water and even had my bladder checked out recently.
I meant alternating between 100 and 50mg at the first of the year.
There is no justification for keeping you on ctx for that long. If it hasn't gotten the Wegs into remission by now then it isn't the right drug. Vanderbilt is a fine institution but they aren't Wegs specialists. Prolonged use of ctx like that is putting you at a ridiculous risk for cancer. Why haven't they tried rtx??
I'm with Sangye on this. I've no medical training but virtually all specialists are in agreement that this is too long.
Be Well!!
My weg's specialist from Cleveland Clinic, only would allow me to be on ctx for 6 months, then did a ct scan to see what was happening in both lungs. She then moved me to cellcept with rtx infusions 3 months later. I have had improvement, but so new sites started up. I am having my second round of rtx right now, I asked her about going back to ctx and she did not like that idea at all.
I'll mention it to her again today in an email. My labs from my recent visit are mostly ok aside from my SED rate of 36 and CRP at 20.5 (still not bad), but this can be so many things.
Should the CTX make the granulomas go away? They are not going away, but not getting any bigger.
Sangye- Can you give me a few questions that I can ask my dr? I know seeing a specialist would be ideal but my Dr.'s and Vandy say I'm doing great. Also, I'm a single 40 year old that has to work to pay the mortgage...and traveling to XYZ to see Dr. XYZ would be a huge expense. I have no idea where I would find the time to pull all the info a new Dr. would need.
I haven't been feeling bad but I did fall down some steps on Christmas Eve and aside from bumps, bruises and a crushed ego, oh, and a carpet burn between my eyes), I survived. Until about 5 days ago, when I started having tingling on the right side of my face in a few different spots. It's not a stroke, but maybe nerve damage or what I think...Shingles. Can you have shingles on the face with no spots, from a bump to the head?
THANKS GUYS!