Looks like Rituxan is in my future

[ScreaminMeanie]

Almost 4 weeks after switching to MTX injections (from oral), there's no real improvement in arthritis symptoms, and I developed a new skin lesion. Since I currently have an insurance company which includes Rituxan as an "approved drug" for treatment of WG, my rheumy and I figure we might as well go for it now (fiscal year for my insurance ends June 30). Also, I've already "failed" on two different drugs, so that makes me a good candidate for RTX. I hope. :rolleyes1:

Meanwhile, I'll stay on the MTX injections until we get approval from the insurance company. Of course, I just bought a box of 100 syringes. :tongue1:

[Brooke]

Good luck with the Rituxan, I hope it does the trick for you!

[ArlaMo]

Good luck!! I have my second infusion tomorrow, and so far, so good.

[Sangye]

I'm a little surprised that your rheumy would jump to rtx so quickly since mtx can take at least 1 month to kick in, if not 2 or 3. What involvement do you have?

[Chris G]

MTX doesn't seem to be working for me either (switched from oral to injectible about 5 weeks ago). My docs offered to let me try either adding Imuran to the MTX, or jumping right into RTX. I chose to try adding Imuran first, because I don't have anything life threatening going on. But, I wish you GREAT luck with the RTX!! What are your symptoms?

[ScreaminMeanie]

At the moment, really awful arthritis in my ankles, which started a few months ago (after 8? months on MTX oral) (some days I can barely walk), and one of the big, nasty skin lesions - like a boil. Two weeks after I switched to the injectable version, I developed the first full-blown lesion I've had in this flare - prior to diagnosis of this flare last summer, I'd only had fairly minor surface lesions. These deep boil-like things are what I had the first time around. They are painful, and ugly, and scary.

When I first started taking the oral MTX last summer, I saw immediate results. I'd been wearing a foot brace for foot drop, and I was able to stop using it less than two weeks after starting the MTX. I don't know why it's not working anymore. Very frustrating.

(From my Rheumy's perspective, the new symptoms starting up *after* switching to the stronger dose of MTX is an indication that the MTX has stopped working for me.)

I don't have anything life-threatening going on either at the moment, but since CTX is off the table for me, and I've just spent almost 10 months on MTX which is clearly not working, I feel like I need to stamp this thing out before it gets any worse. I'd rather not spend another 6 months to a year "finding out" if Imuran will work while in the meantime new, possibly permanently damaging, symptoms are showing up. I've already potentially permanently lost partial nerve function in both of my feet. Also? The fewer of these nasty drugs I can expose myself to, the better, in my estimation. Especially if I can do it when I've already met my deductible for this fiscal year. ;)

[Chris G]

I don't have anything life-threatening going on either at the moment, but since CTX is off the table for me, and I've just spent almost 10 months on MTX which is clearly not working, I feel like I need to stamp this thing out before it gets any worse. I'd rather not spend another 6 months to a year "finding out" if Imuran will work while in the meantime new, possibly permanently damaging, symptoms are showing up. I've already potentially permanently lost partial nerve function in both of my feet. Also? The fewer of these nasty drugs I can expose myself to, the better, in my estimation. Especially if I can do it when I've already met my deductible for this fiscal year. ;)

I agree with you 100% - I think 10 months is long enough to fool around - especially if new symptoms are developing. I've been on mtx for about 5 months - and about 3 weeks after changing to injectible, I do think I was starting to see a trace of improvement. But then I came down with a cold, which muddied the waters for me. And that was right when I was due to see my rheumies. With nothing new developing, we agreed to try adding imuran - one last effort before trying rtx. I will give the mtx/imuran about 8 weeks or so to prove itself. Then I may climb aboard the rtx train!

I hope the rtx does the trick for you!!
(wouldn't you know it - I have another cold! 2 weeks after the last one)

[ScreaminMeanie]

You mentioning getting two colds in such close proximity made me think of two things:

1. Coming that close together, it almost sounds like the "colds" could be WG symptoms? Have you talked to your rheumy about that?

2. I have not had one cold/virus/bug/ANYTHING while on MTX. It's almost like it's not actually suppressing my immune system. And it's not like I haven't been exposed. I work in a big office building with about 80 people, with members of the public coming and going all the time. While I'm very careful about washing hands, etc., it's just not possible to stay away from everything. I've actually had FEWER colds and other viral type illnesses this past year than in previous years!

[Chris G]

With the first cold, I did see my rheumies about 4 days into it. They didn't seem concerned about it, and it played out like a normal cold.....runny nose, sneezing, scratchy throat, and it went away peacefully after about a week. The strange thing that I did make note of is this......my whole life, whenever I've gotten a cold, I get a cough that starts after about 5 days to a week into the cold. The cough would invariably last for at least a week or two, and keep me up every night. This time, I had a bit of a cough during the week, but NO lingering cough at all afterward! This is SO strange to me! Anyhow, I made a note of it, and I wonder whether my lifelong "cough-with-a-cold symptom" was wegs related all along, or whether it could simply have been a touch of asthma, which was controlled this time by the prednisone I'm on.

This current cold is a little more suspect. It's very mild, and I'm not 100% sure it's a cold or some mild wegs symptoms. I am having quite a bit of sinus and ear pressure (in my wegs ear), but no cold like sneezing to speak of. I do not have any increased nasal crusting or bleeding. I'm making notes, and will give it a few more days to see what happens.

It's funny you say that about mtx not supressing your system - I thought the same thing when my first cold went away in just one week!

[JanW]

My colds are going away more quickly than they used to for sure (I'm also on mtx) but I'm fully in a drug maintained remission and asymptomatic, so I'm not sure what that's all about!

[Cindy]

Just released from NORD:

FDA approves Rituxan to treat two rare disorders (http://www.wegeners-granulomatosis.com/forum/redir.aspx?C=8ca344c2c8ea498e8d2b23c5c0056e0a&URL=http%3a%2f%2fwww.fda.gov%2fNewsEvents%2fNewsro om%2fPressAnnouncements%2fucm251946.htm)
Tue, 19 Apr 2011 15:07:00 -0500

The U.S. Food and Drug Administration today approved Rituxan (rituximab), in combination with glucocorticoids (steroids), to treat patients with Wegener’s granulomatosis (WG) and microscopic polyangiitis (MPA), two rare disorders that cause blood vessel inflammation (vasculitis).

:thumbsup::thumbsup::thumbsup:

[delorisdoe]

This current cold is a little more suspect. It's very mild, and I'm not 100% sure it's a cold or some mild wegs symptoms. I am having quite a bit of sinus and ear pressure (in my wegs ear), but no cold like sneezing to speak of. I do not have any increased nasal crusting or bleeding. I'm making notes, and will give it a few more days to see what happens.



This is EXACTLY what I am experiencing. I feel as though tomorow I will wake up with a cold or sinus infection. I never do though, and i have been waiting for this for more than a month.

[ScreaminMeanie]

Just released from NORD:

FDA approves Rituxan to treat two rare disorders (http://www.wegeners-granulomatosis.com/forum/redir.aspx?C=8ca344c2c8ea498e8d2b23c5c0056e0a&URL=http%3a%2f%2fwww.fda.gov%2fNewsEvents%2fNewsro om%2fPressAnnouncements%2fucm251946.htm)
Tue, 19 Apr 2011 15:07:00 -0500

The U.S. Food and Drug Administration today approved Rituxan (rituximab), in combination with glucocorticoids (steroids), to treat patients with Wegener’s granulomatosis (WG) and microscopic polyangiitis (MPA), two rare disorders that cause blood vessel inflammation (vasculitis).

:thumbsup::thumbsup::thumbsup:

Excellent!!!!!

[BrianR]

Just released from NORD:

FDA approves Rituxan to treat two rare disorders (http://www.wegeners-granulomatosis.com/forum/redir.aspx?C=8ca344c2c8ea498e8d2b23c5c0056e0a&URL=http%3a%2f%2fwww.fda.gov%2fNewsEvents%2fNewsro om%2fPressAnnouncements%2fucm251946.htm)
Tue, 19 Apr 2011 15:07:00 -0500

The U.S. Food and Drug Administration today approved Rituxan (rituximab), in combination with glucocorticoids (steroids), to treat patients with Wegener’s granulomatosis (WG) and microscopic polyangiitis (MPA), two rare disorders that cause blood vessel inflammation (vasculitis).

:thumbsup::thumbsup::thumbsup:

Superfantastic!! (no... this is not a Canadian word. Just appropriate)

[Sangye]

WOW! What excellent news!! (Btw, the link doesn't work but you can google "rituximab Wegener's FDA" and get tons of links to articles about the news). Thanks for posting it, Cindy. :thumbsup:

[vdub]

met my deductible for this fiscal year
This is the 3rd year in a row that I have met my catastrophic cap. I hit the cap about a month ago. It's nice to know the rest of the year will be free, but then I have to consider how much it cost me to get there.

I just got my 2 week blood work back..... The c-reactive is finally down. Maybe I'm heading into remission, but don't know. Next doc appt in SLC is June.

Great news on the rtx!

[ScreaminMeanie]

This is the 3rd year in a row that I have met my catastrophic cap. I hit the cap about a month ago. It's nice to know the rest of the year will be free, but then I have to consider how much it cost me to get there.

I just got my 2 week blood work back..... The c-reactive is finally down. Maybe I'm heading into remission, but don't know. Next doc appt in SLC is June.

Great news on the rtx!

This is the second year in a row I've exceeded my "out of pocket" expenses. Maybe I should go ahead and let the RTX infusions trail over into July. Then I'll have exceeded my out of pocket expenses for next year in one day! LOL

Good news about your C-RP. Fingers crossed you ARE going into remission!

[ScreaminMeanie]

Got the okay from the insurance company today - waiting for a call back from the infusion center for scheduling!

[Brooke]

Yay!!! :thumbsup::thumbsup:

[ScreaminMeanie]

I'm scheduled to have the first of the four infusions day after tomorrow! I'm both excited and nervous. Much as I admire Sangye, I do NOT want to be like her when it comes to Rituxan!!