On RTX for 1 year

[blu4runner]

I just completed 1 year of RTX treatment and am very pleased with the results. I started RTX last August because I was in an active flair. I had 4 weekly treatments of RTX then I changed to getting the infusions every 4 months. I am still on 5mg prednisone daily as well. After meeting with my DR's last week at UPENN they were pleased with the treatment outcome. I go back in 4 months for the next infusion. Pulmonology released me from routine visits. Said my PFT was the best in 2 years with increased volume and oxygen saturation. I had another MRI on my kidney last week to follow up on the granuloma on my kidney. I picked up the test results and was happy to see the granuloma that was 3.8cm in Jan is now 2.1cm. I follow up with the kidney DR this week to review the results with her.
Overall I am very pleased with the improvement in my symptoms now if I can just get to the state where I can get the trach removed I will ne on cloud nine.

To top off the week of good medical news, my grandson was born on 8/2! Had a GREAT week overall.

[jlove]

Congratulations on a new family member! It sounds like this really was a great week for you! I'm glad to hear Rituximab is working for you and that your PFT was the best in 2 years, it must have been great to hear those results. It's always great to hear good news about a drug/treatment on here. I'm also a patient at Penn (with Dr. Merkel) and he talked to me at my last visit about Rituximab because I recently started flaring. I'm going to give 6 weeks of injecting Methotrexate a try and then re-evaluate from there. Your news is very reassuring if I do end up switching to Rituximab. So far, it seems like a lot of people like it!

[blu4runner]

Yes we think Dr Merkel is wonderful. I was able to get in a clinical trial with him and I get the RTX for free without having to fight Anthem to get it. I started on methotrexate pills and later switched to the Methotrexate injections but I did flair and that is when I started the RTX. We are very pleased with the staff and treatment we at at UPENN. It's a 4 hour drive to see the DR but totally worth the trip. Good luck with your treatment!

[Debbie C]

Congradulations on everything. Now you will feel good enough to play with your new grandson. :hug3:

[Jaha]

What great news you have, congratulations with your results from rtx and on your new grand baby! Wishing you all the best!

[WG mom]

First, congratulations Grandpa. Very exciting to have a new grandson. Best wishes to you all!
With regard to your rtx treatments, how long after the first four drips did you begin to experience positive results? My daughter had her 4th treatment last week and no change. I know I've read it can sometimes take a couple of months, but we, of course, were hoping for quicker results. At present, the Wegs has remained localized in her sinuses. So that's at least comforting.
Thanks.

[blu4runner]

It was several months before I started to feel any results. But I haven't had any flair and other tests are better since being on the RTX. Best of luck with this treatment

[WG mom]

Thanks. Appreciate the information.

[morningsunshine]

Congratulations on your new grandson!

It's great to hear that RTX is working well for you 1 year on.