Changing Meds--FROM MTX TO CTX

[snooz23]

So I am back from Cleveland, nodule in my lung continues to grow, sed and cpr are up, ear congestion, drainage and sinus pain are all back. This after over 5 months of mtx. So it seems this is not the drug for me, kept things in order a bit, but as I decreased the pred. it came back and actually the nodule grew even on higher doses. Therefore I discussed several options w/ Dr. Langford--injected mtx., rtx., ctx. and a new clinical trial they are doing there (sorry I forget the name of the drug). Anyway after laying it all out, weighing all the pros and cons I have started the ctx. today. Orally at 100mcg/day. The goal of course is 3 months and off and on to maintenance. This means back to 60 mg of pred too ugh!! I worked so hard to get to 10mg. I know I have a lot to "worry" about in terms of side effects w/ this drug and I just have to let a lot of that go because I am aiming for remission and will get there. Actually first day is moving along smoothly, it is only 2:30, feeling good and hopeful for this one.

[pberggren1]

If I remember correctly Susanne you have never been on ctx bebore, right? I hope the ctx will knock the WG out for you.

[elephant]

Snooz sorry you have to ho through this again. I had to go through it again back March 2009 ( lung nodule) new meds with 60 of prednisone. Hoping this works for you. Out of curiosity, why you didn't pick RTX? That is the only option I have if I get worse...

[Jack]

Hope the ctx works for you, it did for me.
As for side effects - after several sessions of treatment with it, I'm still here!

[snooz23]

Yes this is my first time (and LAST--fingers crossed) on Ctx.

I didn't choose RTX. because of the vast amount of uncertainites associated w/ it for Wegs. In the end of the day I chose to go w/ the has been "working" in many cases since the 70s (Dr. Langford said it very rarely will not induce remission--the troubles often begin when the maintenance drug is introduced). I know it presents the potential of tons of horrible side effects, however I think they (Dr. Langford) has gotten very good at managing those risks and taking every precautions possible. Plus the RTX would of required some preliminary testing and then trips to Cleveland to get the infusions. I do live sort of close (2.5 hrs. each way) but I also have a young family (ages 2 and 4) with no family living any where in the area so it makes going there rather difficult. Last month alone had me going 3 times which was extremely stressful and hard (the last thing you want moving to get into remission).

[Sangye]

Snooz, it can be difficult to choose. I hope the ctx works well for you. So sorry you have to go back up on pred! I wouldn't say there are "vast" amounts of uncertainties with rtx. It's been in use many years for Non-Hodgkin's Lymphoma. My hematologist said they give 16 infusions in the first round with NHL and it still has a great long-term safety record. (That's 4 times more than the Wegs protocol) The latest study comparing ctx and rtx for Wegs was favorable in terms of safety.

I don't question your choice, though. I know you have different considerations. Each one of us also has a gut feeling about a particular drug, too.

It's amazing how individualized our care has to be. Last summer my lungs were hemorrhaging and I had formed a few nodules (never had them before). But my Wegs doc at JHU only recommended 20mg of pred for the first month of ctx until it was up to speed, and no pred needed after that. (And he kept me at 150mg ctx, which was 1/3 less than my weight-adjusted dose should have been). I didn't do the 20mg pred, just 4-5mg and he didn't make a fuss. Glad he put me on the lower dose of ctx, since even that dose was too much for my bone marrow!

Another JH rheumy who consulted with me while I was hospitalized wanted me on ctx and 80mg pred! He specializes in scleroderma, not Wegs.

Two take-home messages: 1) Only let a Wegs specialist decide your meds/dosages, and 2) Don't compare your doses to other Weggies!

[snooz23]

Yes it's funny Sangye---CTX was the furthest thing from my mind on the drive up (I was thinking NO WAY am I taking that). I was thinking I am going to go for the injected mtx. or the rtx. But after listening to all the sides of the stories and the fact that Dr.Langford seemed most enthused about this treatment for me (my nodule is very "funny" acting) I decided to get on board, stay positive and be in remission by summer. As I know you are (and by the way glad your additional dose of RTX went well and you are feeling better), I am ready to move forward out of this rather stagnet, simmering state. Here's to health, happiness and vitality in the coming months and as you said 'reversing our bodies systems'~

[elephant]

Thanks Snooz for the letting me know why you chose it. I completely understand what your saying. I am with you on the "Happiness and Vitality in the coming months!" Cause it is going to happen.

[Sangye]

Darn tootin' it is.