Trying Something New

**Sangye** · 09-01-2012, 02:05 PM

I saw Dr Seo this week for a routine visit. After this round of rtx, it took me a whopping 9 weeks to bounce back, while it normally takes only 2 weeks. Also, it only seems to work for about 6-7 months, leaving me in increasingly awful shape as I try to make it to one year in-between treatments. (I don't have any other drug options and we've been trying to limit my exposure to rtx)

Dr Seo changed the plan to do 1 rtx infusion every 4 months. He said a doc (John Niles at Boston Univ?) has been doing that with some patients and having success. He said the 4-month timing is completely arbitrary but it does work for some. We both felt it's worth trying since the 4 infusions knock me down so badly and it's a long year in-between. Maybe the Wegs dog will agree to sleep if he gets a short lullaby every 4 months?

First one is in October. I'm not looking forward to getting rtx again so soon, but I can bounce back from just one infusion pretty quickly.

**mishb** · 09-01-2012, 02:17 PM

That sounds like a good option to me Sangye.

I really hope it works for you.........it's not fair how hard you get hit and you deserve the results that everyone else seems to feel.

Bring on October, I say

**pberggren1** · 09-01-2012, 05:06 PM

I sure hope this new plan works for you Sangye.

**carriej22** · 09-02-2012, 12:29 AM

This is interesting.

Maybe it's because I'm 23, but even when I was getting RTX every week for a month (4 infusions) I was mostly tired for just a few days. I am due to have another round in Dec or Jan. He is thinking of waiting until January now since I am all screwed up on my pred/meds since I had that infection/drug reaction/what have you.

I even went shopping after one infusion and out to eat... Lol. I didn't feel full of energy or anything mind you. Do most of you get these RTX infusions on a timely basis? We are just planning on doing mine once more and then seeing if that's all I need. It seems as though most of my health problems right now are related to the drugs I am taking, rather than the wegeners itself. All my wegs issues (joint pain, sores, eye pain, lung nodules, coughing up blood, blood and protein in urine, etc )are all completely gone. Weird thing is how fast it stopped once I started RTX. Literally huge difference in 48 hours, from being bed ridden and having burgundy urine to walking around and peeing normally.

ill be curious to see what happens in the future... Knock on wood, none of my wegeners stuff has come back. It's all been either allergic reactions, infections or some other cursed thing.

**KathyB** · 09-02-2012, 01:52 AM

Sangye -- I hope this works for you. I posted in a different thread that I used Dr. Seo's .ppt on vasculitis and WG in my appeal for Virginia disability. I'd like to hear more about his decision re Rtx and why you waited one year for a "next" infusion. Apparently, my immunoglobulin levels are low and my rheumy hasn't made a decision on whether or not to forge ahead with another round. Like Carrie, my WG seems to be under control (no major flares) for now. I see my nephrologist and ENT on Wednesday and my rheumy at the end of September. Again, I hope you see some positive results soon!

KB

**drz** · 09-02-2012, 05:48 AM

It is good to see different approaches tried for maintenance regimes. It is just logical that people will differ in what approach is appropriate for them and maybe some day they will develop a better protocol to better guess what approach is best for which people. It will be interesting to follow this and see how it works for you. Of course we are all hoping for a better outcome. Keep us posted.

**Debbie C** · 09-02-2012, 11:34 AM

Sangye,I really hope this new plan works well for you and you start to feel better alot sooner

Carrie, I'm glad to hear you are doing so well after all the crap u went thru

Hope

**Sangye** · 09-03-2012, 01:49 AM

Originally Posted by carriej22

This is interesting.

Maybe it's because I'm 23, but even when I was getting RTX every week for a month (4 infusions) I was mostly tired for just a few days. I am due to have another round in Dec or Jan. He is thinking of waiting until January now since I am all screwed up on my pred/meds since I had that infection/drug reaction/what have you.

I even went shopping after one infusion and out to eat... Lol. I didn't feel full of energy or anything mind you. Do most of you get these RTX infusions on a timely basis? We are just planning on doing mine once more and then seeing if that's all I need. It seems as though most of my health problems right now are related to the drugs I am taking, rather than the wegeners itself. All my wegs issues (joint pain, sores, eye pain, lung nodules, coughing up blood, blood and protein in urine, etc )are all completely gone. Weird thing is how fast it stopped once I started RTX. Literally huge difference in 48 hours, from being bed ridden and having burgundy urine to walking around and peeing normally.

ill be curious to see what happens in the future... Knock on wood, none of my wegeners stuff has come back. It's all been either allergic reactions, infections or some other cursed thing.

Carrie, it's great to hear how well the Wegs is responding to rtx. The bad reaction I get is pretty uncommon. Most people experience what you did-- a bit tired for a day or two. Some people have no negative side effects at all, which I cannot even imagine!

**Sangye** · 09-03-2012, 01:58 AM

Originally Posted by KathyB

Sangye -- I hope this works for you. I posted in a different thread that I used Dr. Seo's .ppt on vasculitis and WG in my appeal for Virginia disability. I'd like to hear more about his decision re Rtx and why you waited one year for a "next" infusion. Apparently, my immunoglobulin levels are low and my rheumy hasn't made a decision on whether or not to forge ahead with another round. Like Carrie, my WG seems to be under control (no major flares) for now. I see my nephrologist and ENT on Wednesday and my rheumy at the end of September. Again, I hope you see some positive results soon!

KB

When Wegs is active in me it immediately goes to the most severe involvement (alveolar/lung hemorrhage) which requires the strongest immunosuppressants. I can't take ctx again. I was on it for 7-8 months at dx, but grew increasingly weaker. My local rheumy back then apparently ignored the fact that it was destroying my bone marrow. Dr Seo tried me on it again a couple years ago, but even at a sub-therapeutic dose (ie, way below what I should have taken based on weight), my bone marrow started tanking within 3 weeks. Scratch ctx off the list of options!

I'm allergic to mtx and flared badly on Cellcept, although neither is strong enough to keep the Wegs under control anyway.

Rtx is my only option. Because the Wegs roars back to life as soon as the rtx wears off, we have to keep re-treating. Dr Seo has been concerned about me developing an allergy to rtx by using it so often, which is why we've been trying to limit it to once a year.