Rtx maybe?

[sbeach78]

The doctors are saying they may try the RTX infusions in the next few weeks. I am not sure if its the best move or not. I know my WBC is at 10.1 which means in three weeks it only dropped by 2.3. My kidney function is only roughly at 30%..I know it seems to be a miracle drug to many, but as much change as I have gone thru this year changing meds is a nerve racking thought right now. And anyone who has renal involvement, my creatinine level 189.0 mg/dl then my Protein creatinine ratio was 2.2. But I don't know how to make an interpretation of those numbers. Any helpful words will be appreciated.

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

[LisaT]

I don't have renal involvement, but wondering what meds you are now on. From what I've read here, most people improve and feel better with the RTX. What is your hesitation in taking it? Sometimes change is good...

[sbeach78]

Well I know the normal range on WBC for a man is between 3.5 and 5.75,I feel like though its not dropping fast, I am not far enough off normal to switch meds. Right now I am on CTX at 175mg a day. I like the idea of not having to take the ctx everyday, but as my numbers are getting closer to normal I don't want to switch meds at the moment.

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

[MikeG-2012]

Right now I am on CTX at 175mg a day. I like the idea of not having to take the ctx everyday, but as my numbers are getting closer to normal I don't want to switch meds at the moment.

I don't like to switch the meds around too much, BUT a switch from Cytoxin to RTX, I'd be jumping at the chance. RTX has so many less side effects, and seems to do so much more for a lot of us.

I hope it is as good for you as it has been for many of us. It's certainly better than Cytoxin any day in my book.

[JeanMarie]

May I ask the normal creatinine range on your blood test? My lab is .4 - 1.4 but I know different labs use different ranges. If your lab is like mine, 189 would be really, really high. Is there protein in your urinalysis? That would also be an indication of ongoing kidney involvement & maybe that is why the doctors are considering a change. I would schedule an appointment with your Rheumy & have a talk about why they want to change. (If I show protein in my urinalysis, my nephrologist is on the phone pretty quick saying we have to treat, but we are all different) Just my thoroughly unscientific opinion & I have no medical background. I hope everything works out for you!!

[chris.wg]

I just went thru the ctx to rtx switch 2 weeks from this coming Tuesday is when I got my last infusion of the 4 infusion treatment once a week. I had similar reservations. Though not for renal problems. The thing is CTX incredibly harsh on your system which is why my old doctor recommended me else where so I could get RTX and insurance coverage. I started out on 200 mg dosage of CTX when my ANCA numbers as well as other symptoms looked good he started reduction by 25 mg a month. I only ever made it down to 125 when Numbers started coming back up again. We held there for 3 months and nothing moved. Doctor said this dosage is holding you but you have been on it way longer then I like <this past April was 2 years> I would Like for you to consider going to the medical university to see what they think. I believe rituxan is your best bet. But I probably cannot get your insurance to approve it. <doctor was out of network> So I did just that set up the First appointment and sure enough the doctor there agreed with him. Not sure why I just told you exactly the process that made me swap other then the fact I ramble as I have stated in the past. But my point is CTX is suppose to be pretty harsh on your system. My old doctor would check kidney function for both the WG and CTX involvement. If your doctor thinks this is a good switch I highly recommend listening to him.

[sbeach78]

So how are your numbers now?

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

[chris.wg]

I haven't went for a anca blood work yet so I'm not sure I see the doc again in a few weeks he even though I haven't seen him long I am willing to bet based off of how he has ran so far I will go do all the blood work again that week at the University lab. If not I will be finding out from him what the next plan is or should I be getting monitored again locally. Only thing he said between then and now is if I have ANY issues what so ever to call him..... Seems to be the pretty standard statement to hear from doctors as of late.

[sbeach78]

Between the renal specialist and my rheumy I have my numbers checked every two weeks, but I think its because of the amount of kidney involvement.

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

[chris.wg]

On the CTX I had them checked every month. The RTX treatment is still a learning curve for me. I still think the RTX is something to seriously consider thought with kidney involvement. I assume you are drinking ALOT of water daily as I know I had to just to prevent ctx from causing damage to bladder and kidney's and with you already having kidney involvement....

[drz]

Well I know the normal range on WBC for a man is between 3.5 and 5.75,I feel like though its not dropping fast, I am not far enough off normal to switch meds. Right now I am on CTX at 175mg a day. I like the idea of not having to take the ctx everyday, but as my numbers are getting closer to normal I don't want to switch meds at the moment.

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

My latest labs indicate WBC normal range from 4.0 to 11.0. I know I usually run in middle of this or less except when I have an infection.

[drz]

May I ask the normal creatinine range on your blood test? My lab is .4 - 1.4 but I know different labs use different ranges. If your lab is like mine, 189 would be really, really high. Is there protein in your urinalysis? That would also be an indication of ongoing kidney involvement & maybe that is why the doctors are considering a change. I would schedule an appointment with your Rheumy & have a talk about why they want to change. (If I show protein in my urinalysis, my nephrologist is on the phone pretty quick saying we have to treat, but we are all different) Just my thoroughly unscientific opinion & I have no medical background. I hope everything works out for you!!

I am guessing they move the decimal point or it was omitted and it would equate to 1.89 on our scale. Normal creatinine is .7 to 1.3 at my lab but I usually run from 1.3 to 1.7 which is consider OK and stable for my stage three kidney damage.

[jmarlene.dunbar]

My husband Johnny has Wegners. He has had it for over 10 years. Right now he is doing really well. He has some joint aches but not to bad. He did take the weekly treatments of Rituxan and did real well and no side effects. The doctors call him a miracle. I know that God has touched him too.


Sent from my iPhone using Tapatalk

[sbeach78]

What does the RTX infusions consist of? How long do they take? Is it an all day affair?

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

[MikeG-2012]

What does the RTX infusions consist of? How long do they take? Is it an all day affair?

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

It is usually 6-7 hours for the first one because they keep it slow to make sure you don't react to it. 4-5 hours after the first one goes OK.

It's a simple IV in the arm, hooked up to a pump that regulates the flow. Usually, they will give you some dose of solumedrol and a dose of Benedryl. They give me two Tylenol tablets too. They start the IV with saline running to make sure they have a good line, then switch over to the RTX line and start that slow. Every 30-60 minutes, they will check on you and ramp up the speed of the RTX going in. My first time, I was out in the general seating at the Oncology department so they can keep an eye on you to make sure you tolerate the meds (and behave LOL!). If you are a good boy like I was, for the remaining infusions, I had a private room.

Take a tablet, a good book, puzzle, your family--something to keep you busy. Prepare to be hopped up by the steroid int eh IV and then crash when the Benedryl hits. I learned to combat this with a little caffeine.

All in all, its relatively painless for most folks.

Does that help you?

[jmarlene.dunbar]

Be prepared to stay all day. It usually takes 6 hours. They start an IV and they usually give you a dose of Benadryl and solumedrol before. To help you to not have a reaction. They do keep a close check on you through out the procedure to make sure that your tolerating it ok.


Sent from my iPhone using Tapatalk

[sbeach78]

Thank you all, everyone here is so helpful.

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

[vijay_krishna_kumar]

Hi


Sent from my iPhone using Tapatalk

[vijay_krishna_kumar]

Hi, my wife is with wegeners since 2007 and now on rituximab since 2012. Now doing very fine. Its been a miracle drug


Sent from my iPhone using Tapatalk

[sbeach78]

That's awesome I find out Tuesday if they want to switch or not. I pray it is a miracle drug . Wish me luck!

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

[vijay_krishna_kumar]

I wish you good luck


Sent from my iPhone using Tapatalk

[vijay_krishna_kumar]

Rituxan as per my wife's experience, will be a wonderful therapy. Absolutely, it brings wegetarians back to normalcy. So far frm 2012 since its infusion, no side effects and only positive effects.


Sent from my iPhone using Tapatalk

[Alysia]

Rituxan as per my wife's experience, will be a wonderful therapy. Absolutely, it brings wegetarians back to normalcy. So far frm 2012 since its infusion, no side effects and only positive effects.


Sent from my iPhone using Tapatalk

welcome to the Forum. yes, RTX is def our miraculous med.
http://www.wegeners-granulomatosis.com/forum/medication/3159-rtx-outcomes-my-list.html

[vijay_krishna_kumar]

Thank you for the link.


Sent from my iPhone using Tapatalk