Rituximab Round Four

[elephant]

Sleep good tonight Sangye. Hoping tomorrow you will be able to stand without shaking.

[Chris G]

So glad you're finally finished with the rtx treatments.
I hope the down time will be shorter than you expect. You deserve a much needed break!

[Sangye]

Thanks you guys

[jmmilliorn]

I just talked to Dr Villa Forte at the Cleveland Clinic. She is going to start me on Imuran now that my two Rituximab infusions are completed. I will be taking 150 mg per day in three tablets. I may be taking Imuran for several months. I get to continue tapering off the steroids, too, but very slowly. I have had to stop taking them all in the morning. Once I got the dose below 15 mg/day, I was running out of gas during the night and having a rough morning until the new daily dose kicked in. Now I take some at breakfast as usual and the rest of the daily dose in the evening. I'm down to 12.5 mg/day and will go to 10 next Sat. These last two days I have had more energy than I've had in several months. I hope this means I've turned a corner on my recovery, but I'm afraid to celebrate yet. I can finally start walking again if this energy boost continues. My legs aren't as shaky now and I'm not as short of breath as I've been. I still have other problems to deal with--like the blood clot and the swallowing problem and a nodule in my right lung, but I may be seeing some real progress for the first time since January when I was first diagnosed.

[Sangye]

That's great news, Mike! I bet your adrenals were just not getting what they needed for part of the day and it was manifesting as fatigue and shakiness. Very common. Remember that feeling, because it will be a useful indicator as you taper the pred, warning you when you've tapered too fast. Even though it's fresh in your mind right now, I suggest you write it down and describe it well. You wouldn't believe how much you start to forget as the months go by.

The blood clot and the nodule will take care of themselves with the drugs you're on. I hope you feel better every day.

[Rini]

Congratulations!

[vdub]

I may be seeing some real progress for the first time since January when I was first diagnosed.

Lets hope this trend continues! Nothing quite as good as being able to get around!

I was really hurting this morning and ended up sleeping half the morning away. Feeling pretty good now, tho.....

[elephant]

J.Million, how often do you go to cleveland clinic? I had a lung nodule taken out, they werent sure if it was cancer or wgs. The whole time I knee it was wegs. How was it confirmed that it was a wegs lung nodule?

[vdub]

I may be wrong, but I think they biopsy the tissue and look for granulomas. That is what they did with my pit and, among other things, that is what led them to the dx of WG -- they found granulomas.... I don't have the original dx letter with me, but I'm 99% sure that was the case.....

[jmmilliorn]

E., I went in Jan to get diagnosed. Great trip. I went back in early April for a checkup, and then I went again the end of April when I had a toxic reaction to Methotrexate. That trip was unscheduled. Now that I've taken Rituximab, Dr. Villa Forte wants to see me again in August before she puts me on Azathoprine. It isn't on a regular basis, but I think she wants to see me a couple times a year at least until I go into remission (if I ever do) I have enough Aadvantage mileage that it is no problem money-wise. It is only a two hour flight for me. The care there is so much better than anywhere else, I don't mind going there.

J.Million, how often do you go to cleveland clinic? I had a lung nodule taken out, they werent sure if it was cancer or wgs. The whole time I knee it was wegs. How was it confirmed that it was a wegs lung nodule?