Trying to get an appointment...

[elephant]

I know it. Today I appreciate that I can breath even stuffed up. Lily Pony hope things get better. It is a ten hour drive from south carolina to Ohio. We are trying to arrange family to take care of the kids when we go in June.

[stikker]

I can't agree more about getting a specialist. I just had my first appointment with Dr Merkel at Boston Medical Center and it was as awesome experience. I feel much more positive. He will consult and I will see him quarterly. I have joined his research study. He wants me off the 60 mg prednisone (taper immediatly) and off cytoxan in 3-4 months instead of 6 months. I LOVE HIM!!!!!!!!!
I feel so much better about my future. I'm not even sure why, all we did was talk but my outlook is completely different.
I managed to get an appointment in a couple of weeks. I agree. Get to one even if you have to travel. It is worth it.
stikker

[renidrag]

glad to hear that Stikker, good luck

[elephant]

Stikker, I am so glad you went! Yes, when I went to my WG specialist I felt like I was taken care of. So glad they are weaning the Prednisone and getting you off cytoxan...are they going to put you on another med to replace the cytoxan?

[JanW]

That's great, Stikker. I saw Merkel on some VF video on their website and was very impressed. He sounded so knowledgeable and also like a very nice guy.

[Sangye]

Whooya! I'm so happy you saw Dr Merkel, Stikker. It's hard to describe what a difference it makes to have a Wegs specialist to talk to and guide your care. I was exactly the same after my first appt with Dr Seo (JHU Wegs doc). I felt safe, cared for and understood immediately. I didn't have to carry everything alone anymore.

I hope you'll continue to share with others on here why it's so important to have a Wegs doc.

[stikker]

When I come off the Cytoxan he said he would put me on Azathioprine. I will have to have a TPMT blood test first. To see if I can take it I guess. I have't investigated it yet.
Does anyone else take this and are the side effects better or worse. Seems odd that I don't seem to see it mentioned here.
stikker

[elephant]

Azathioprine is Imuran. I took it and had a adverse reaction it to it. But, in retrospect it was a good thing I took it, I was rushed to the ER and went down hill pretty fast and with all the work up that I had..they found the lung nodule. So that meant the medicine's were not working for me. Anyways, there are people on this forum who take it. It works well for some. Everyone is different....Cellcept seems to work for me so far. Cross fingers and toes...

[Sangye]

Stikker, imuran is a very common drug used to maintain remission or to transition from ctx. Some people can't take it because of a genetic glitch that makes it overly toxic. The TMTP test screens for that. It can be hard on the liver, so while you're on it they routinely check liver function via blood work. Like Elephant says, many people tolerate it just fine and stay on it for years, like mtx.

Imuran, mtx and ctx are chemo drugs. Ctx is by far the most toxic, even at Wegs doses.

[Jack]

I tolerated it well. It is far less toxic than Cyclophosphamide for most and you will probably only be taking it for a few months before switching to something like Myfortic.