Visit with Weg Specialist

[Dumpy]

Sorry I haven't posted on my "Weg Specialist" visit since I got back but every time I get to the forum I haven't been able to catch up reading all of the other post.
I had my visit with Dr. Fessler in Birmingham, Ala. on Oct. 7th and had a really good vist and a really good report. We (my wife and I) stayed in the Dr's office for about 2 1/2 hrs. Spent a lot of time going over history of my Wegs with a very good assoicate Dr. then had about a 45 min. meeting with Dr. Fessler. She was very pleased with all of the care that I have been getting from my ENT and Pulmonoligist. She looked at all of my test,scans and treatments and said that everything was right on target. The only thing that she would sugest would to be and additional urine test to check my bladder for possible delayed reaction to the cytoxan causing cancer which she said is very slim but just a good thing to keep a check on.
We really had a good visit. We also talked about when she considered the Wegs to be in remission and she looks at all of the test but what she really uses as a gage is how I feel as much as anything else.
We also talked about the Rituximab which she seems to think will be approved for use within the next 6 months. Which would be a very good thing if there were a flare because it was so much less harmful to the body. I hope for evey Weggie past, present and furure that they approve it. We all need a break today!
Dr. Fessler is a Rhuemy and has a great staff. I would recomend them to anyone with Wegs.
One thing that she did tell me was I was very fortunate to have 2 good Dr's because she had seen a lot of cases where people had not been put on the right meds are had been pulled off of the meds to quick and did a lot of damage before it was corrected. Even though all of my treatment has been good prior to going to Dr. Fessler I am glad that I went. It really gave me a good sense of where I am.

[Doug]

Good news! Thanks for the update, Dumpy! I'm glad I'm not you trying to catch up with old posts! There have been a few...!

[Sangye]

SO happy for you, Dumpy!! Isn't it a relief to see a Wegs doc and know you don't have to question their knowledge, don't have to teach them anything? You can just relax and let them do their job. You're safe with them.

It took me about 7 months to really be able to relax about my Wegs treatment once I got to my current doc at JH. Even though I knew he was an expert and was so impressed with his knowledge from day one, I had had to defend myself with my docs for so long (2.5 yrs) that it was hard to stop.

[jola57]

2 and 1/2 hours, wow , if I get to spend 5 min with my family doc its a miracle, with my rheumy its usually maybe 10 min.

[Dumpy]

Yes it was really good to sit down and talk with a specialist and fill like they really care about how you are and are concerned about you. The good part about it is that I have an ENT and a Rheumy that are the same way. I have been really blessed with good Doctors. It wasn't always that way though, it took a lot of searching and changing of Doctors but has been worth it.

[RCOSSIO]

Today I had my Rheumy visit and he asked me if this forum discussed Rituxamib...and of course I said absolutely. He did say they were promising results with this treatment, unfortunately he did mention two cases where patients developed PML, I guess it is some type of virus. Anyway, like all drugs not enough studies exist to determine cause of PML, other than patients immune systems might be suppressed to the point that a viral condition materialize.

Other than that he was encouraged by the success of Rituxamib.

[Sangye]

I bet all the rheumys who treat people with Wegs are going wild over the ritux study. It really does change everything.

PML is caused by a virus that most people carry, but it remains in a dormant form unless the person becomes severely immune-compromised. Then the virus attacks cells that produce myelin. Most people die from it pretty quickly, within a month of diagnosis. Both Cellcept and Rituximab carry warnings of PML because they impair immunity so much. There's nothing you can do to prevent it. Last December we thought I had it. I had most of the symptoms. Sure glad it wasn't!

[RCOSSIO]

Ok that's scary

[Sangye]

Happy Halloween!

[jola57]

In for a penny in for a pund, no matter how you look at it anything that we take is going to have side effects that can cause us to die. For now I say stick with the devil you know (cylo and mtx) unless there is compelling reason to change. Didn't know about the PML side effect.