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Chris G
05-10-2011, 03:32 AM
I'm scheduled for rtx on Friday! Should hear about the pre-approval from the insurance company tomorrow. Please keep fingers & toes crossed for me!

Brooke
05-10-2011, 04:30 AM
Good luck!!!!

Sangye
05-10-2011, 04:54 AM
That's great, ChrisG. You'll be fine, don't worry. :thumbsup:

Chris G
05-10-2011, 05:30 AM
Thanks guys.

Such a cute boy you have Brooke!!

aewaustin
05-10-2011, 08:40 AM
Yay!!! RTX has been a godsend for me and hope you have the same kind of luck. Take lots of snacks with you :) I found that I wanted to eat the whole day because I had a weird taste in my mouth. The first three times I took all kinds of food, but the fourth I was smarter and brought some hard candies as well.

Sangye
05-10-2011, 09:07 AM
LOL I wonder if the huge dose of pred they give you had anything to do with wanting to eat all day! I have to grit my teeth so I don't open my mouth and eat eat eat.

elephant
05-10-2011, 10:20 AM
Good luck and hope it all works out for you!

Chris G
05-11-2011, 01:18 AM
Insurance approved! Can't wait until Friday!! I feel like I'm on the road to recovery already :biggrin1:

I recall a thread a while back, where someone was wondering about 2 infusions vs. 4. I'm scheduled for 2, & I wondered why, so I thought I'd try to gather some info about dosing. I'm told that with a 4 round infusion, you receive 750mg of rtx per infusion - for a total of 3000mg rtx. With a 2 round infusion, I will be receiving 1000mg per infusion - a total of 2000mg. As my WG is limited to head and neck (with only a little shortness of breath), the docs feel that 2000 mg will do the trick.

I also did a little research on rtx itself because I wondered how long it will take to feel better, and a couple of people on the board said they thought they felt better right away.

Anyhow, the rtx drug info stated that it was really important to drink a ton of water for the couple of days right after infusions. The reason is that the kidneys are trying to filter out the dead cells in huge quantities, right after the infusions. So, doesn't it stand to reason that if the cells are being killed off in mass quantity, that quickly, we COULD start to feel better right away? I think........YES! That's what I'm stickin' with anyway :wink1:

Geoff
05-11-2011, 01:31 AM
Best Wishes Chris, you sound like a youngster waiting for Christmas!! Hope you get the best present in the world!!

Chris G
05-11-2011, 01:37 AM
You're right Geoff! I'm suddenly so hyper......... I really need to dial it down a few notches.

Geoff
05-11-2011, 01:39 AM
Dont do that, just enjoy the rush!! :w00t:

NicShaf
05-11-2011, 03:24 AM
Best of luck, Chris. I hope Rtx works well for you.

jmmilliorn
05-11-2011, 06:55 PM
I'm getting my 2nd infusion this week,too. My doc said I should feel better in four weeks or less, but I felt better the next day after my first infusion of 1000 mg snd have felt better every day since. I had a toxic reaction to Mtx. pills that I had been taking since my diagnosis in Jan. Glad I did now. I was on a gradual decline since Jan. with ever worsening symptoms and weakness. Now I'm finally showing improvement. No new symptoms since my first Rituximab infusion.

pberggren1
05-11-2011, 10:15 PM
That is good to hear Mike. Welcome to the Forum.

Sangye
05-11-2011, 11:53 PM
That's great, Mike. :thumbsup:

ScreaminMeanie
05-12-2011, 12:52 AM
That's great, Mike! My experience so far has been the same - no new symptoms, and the old symptoms are improving.

Chris, I'm so happy for you that your insurance is cooperating, and that you'll be getting RTX! I'll be thinking about you getting your first infusion this Friday while I'm getting infusion #3!

Sangye
05-12-2011, 12:57 AM
I recall a thread a while back, where someone was wondering about 2 infusions vs. 4. I'm scheduled for 2, & I wondered why, so I thought I'd try to gather some info about dosing. I'm told that with a 4 round infusion, you receive 750mg of rtx per infusion - for a total of 3000mg rtx. With a 2 round infusion, I will be receiving 1000mg per infusion - a total of 2000mg. As my WG is limited to head and neck (with only a little shortness of breath), the docs feel that 2000 mg will do the trick.

I also did a little research on rtx itself because I wondered how long it will take to feel better, and a couple of people on the board said they thought they felt better right away.

Anyhow, the rtx drug info stated that it was really important to drink a ton of water for the couple of days right after infusions. The reason is that the kidneys are trying to filter out the dead cells in huge quantities, right after the infusions. So, doesn't it stand to reason that if the cells are being killed off in mass quantity, that quickly, we COULD start to feel better right away? I think........YES! That's what I'm stickin' with anyway :wink1:
ChrisG, I'm not sure about the dose for the 2-infusion protocol. The 1,000mg dose for each of the 2 infusions is the protocol for RA. It might be the same for Wegs. The next time I see Dr Seo I'll ask him about this.

I do know that the 4-infusion protocol goes by body weight. The dose is 375mg/m2 so the actual dose each person receives will differ according to their weight.

The info about drinking lots of water is not applicable for Wegs. That's for people with Non-Hodgkin's Lymphoma (the original use for rtx), who shed enormous amounts of tumor cells. They can actually get into major trouble with "tumor lysis syndrome."

So many people on here seem to feel better very quickly after getting rtx though. I really hope you're one of them! :hug3:

ScreaminMeanie
05-12-2011, 01:39 AM
I'm a little confused about the "2 vs. 4" thing, too. The dosing instructions clearly say that the protocol for WG is 4 infusions of 375ml/m squared. I know at one point it was up in the air, but if the manufacturer (and the FDA) recommends 4, why wouldn't the doctor do 4?

jmmilliorn
05-12-2011, 04:30 AM
This will be my 2nd infusion. I had the first one two weeks ago at Cleveland Clinic. Now I am trying to arrange for the 2nd one here near home in Texas. But although I thought my local internist had it handled, the insurance company has put the brakes on. They approved the one in Cleveland but won't approve the 2nd one because it is outpatient. (which would cost them less) Everyone we talk to at CIGNA contradicts the last person and the approvals for taking the drug, paying for the drug, where to get the drug, etc. all have to come from different departments and none of them are using the same rule book. They seem unaware that Rituximab is now FDA approved for Wegener's as of April 19th. Classic example of left and right hands now knowing what each other is doing. And I found out that the infusion center my doctor wanted is not 'in the CIGNA plan." And they can't tell me who is. And they won't talk to me, just the doctor and the doctor here wants Cleveland to handle it and Cleveland wants Texas to do it and both have dumped it in my lap again with me powerless to do anything. Hmmmm.
I also can't find out how critical the 2-week window between infusions is. Obviously it isn't happening tomorrow. How long can I go between infusions before the first infusion loses its effect? Neither doctor has answered that. Dealing with insurance companies is worse than dealing with WG today.

Vent, vent, vent. AAaaaaarghhhhh!

ScreaminMeanie
05-12-2011, 04:58 AM
Oh good grief, Mike, that sucks! Is there any chance of you going back to Cleveland for the second one? People who are sick do NOT need this kind of stress!

Chris G
05-12-2011, 05:27 AM
Thanks for the good tips and well wishes. I hope it works wonders. Today has been a particularly bad day for me. Much more tired and fatigued than usual, having a lot of trouble concentrating, and feeling very lightheaded. It's been frustrating, and it's getting me down.

Mike - OMG what a mess!! SUPERVISOR!!!! Ask for a supervisor, and then HIS/HER supervisor if you have to. Don't hang up til they straighten it out for you. They approved the rtx already, right? There shouldn't be an issue about the FDA approval at this point- only WHERE you will have the infusion - and they should have a list of approved or "in-network" infusion centers in your area. Then your doc should be able to order it at that location. GOOD LUCK to you!! Keep us posted.

Chris G
05-12-2011, 06:14 AM
:crying:Oh yeah.......and Sangye rained all over my parade too:wink1:

Sangye
05-12-2011, 06:30 AM
This will be my 2nd infusion. I had the first one two weeks ago at Cleveland Clinic. Now I am trying to arrange for the 2nd one here near home in Texas. But although I thought my local internist had it handled, the insurance company has put the brakes on. They approved the one in Cleveland but won't approve the 2nd one because it is outpatient. (which would cost them less) Everyone we talk to at CIGNA contradicts the last person and the approvals for taking the drug, paying for the drug, where to get the drug, etc. all have to come from different departments and none of them are using the same rule book. They seem unaware that Rituximab is now FDA approved for Wegener's as of April 19th. Classic example of left and right hands now knowing what each other is doing. And I found out that the infusion center my doctor wanted is not 'in the CIGNA plan." And they can't tell me who is. And they won't talk to me, just the doctor and the doctor here wants Cleveland to handle it and Cleveland wants Texas to do it and both have dumped it in my lap again with me powerless to do anything. Hmmmm.
I also can't find out how critical the 2-week window between infusions is. Obviously it isn't happening tomorrow. How long can I go between infusions before the first infusion loses its effect? Neither doctor has answered that. Dealing with insurance companies is worse than dealing with WG today.

Vent, vent, vent. AAaaaaarghhhhh!
Mike that is just awful. Have you spoken to supervisors at Cigna? When I get in a mess like that and they give me the wrong answer I just keep saying "Give me your supervisor" until I've gone all the way up the chain. You are the insured, they have to talk with you.

As far as getting the rtx on time, yes it is important. I was told it should be done right on time-- maybe one or two days extra, but not more than that.

Sangye
05-12-2011, 06:31 AM
:crying:Oh yeah.......and Sangye rained all over my parade too:wink1:
I did? How?

Chris G
05-12-2011, 06:40 AM
I did? How?

Your clairification of my dead cell theory, burst the happy little fairy tail I was living in. But, it is afterall MY fairy tail, so I will continue to believe that all my evil B cells will all find themselves dead and/or dying, on Friday!! And then I live happily ever after.......the end. :flapper:

Sangye
05-12-2011, 06:47 AM
Oh, well I'm a stickler for posting correct info. Your B cells will be dying off with the rtx, it's just that there aren't that many to cause a problem. In NHL there are large masses of lymphoid tissue that die off and can cause major problems.

ScreaminMeanie
05-12-2011, 06:52 AM
I'm still trying to get my jaw back up off the floor after Sangye said she grits her teeth and resists the solumedrol munchies! They're fierce! LOL

Sangye
05-12-2011, 06:58 AM
I've gained 60lbs since being dx'ed-- 40 in the first 4 months and 20 more in the 4 years since. I'm not able to exercise to lose it and it's not possible for me to eat less than I already am. I'm miserable at this weight. It also contributes to the ongoing problem of elevated intracranial pressure. So for me it's just a matter of digging in my heels and refusing to gain one more pound. If that means gritting my teeth to keep from opening my mouth, I'll do it. Where there's a will there's a way.

ScreaminMeanie
05-12-2011, 07:22 AM
Good for you for having the willpower to do that!

When it comes to eating, I "excuse" myself because food is pretty much my only remaining pleasure in life - can't dance, can't ride motorcycles, can't ride horses, can't even drink or take pain meds of any kind. Not a good thing, but so far I've only gained 20 lbs from the preds (in 11 months), so I'm thanking my lucky stars that's all. Sangye, you were probably already on a pretty healthy diet? Whereas I have been a junk food junkie all my life until recently. Because of high BP dx, for the last 4 years I have been eating healthier foods overall (and stepped up the "healthy" emphasis a bit more after WG flare dx). You may not have had room for improvement in your diet, where I had MILES of room.

Sangye
05-12-2011, 08:04 AM
LOL I've gone through phases where my diet was very poor. I've also had financial constraints with not being able to work for 5 years, so I don't eat as well as I did before I was dx'ed. I used to eat mostly organic. Proof that the best diet in the world (along with excellent exercise, etc....) isn't insurance against getting something like Wegs.

ScreaminMeanie
05-12-2011, 08:10 AM
No kidding. I came pretty darned close to divorcing my husband last summer after he made a remark about "stuff like this wouldn't happen to him because he has good genes." *smack* ;)

I sometimes think that most people who aren'tsick want to make any illness the fault of those who are sick so they feel safe. Bottom line is, yes, it's best to live as healthy a lifestyle as is reasonable for your circumstances, but it's still no guarantee that nothing bad will happen to you.

Sangye
05-12-2011, 08:22 AM
I have great genes-- hardly any illness in my family at all!

I was so healthy that when I got dx'ed all my holistic doc buddies got really shaken up, saying "If this could happen to you, it could happen to me." That's the truth. Good genes, eating well, exercise, etc... are all very important factors in preventing disease, but they are not guarantees.

ScreaminMeanie
05-12-2011, 08:51 AM
Exactly! You do everything you can, within reason, to stack the odds in your favor, and you will certainly increase your chances of avoiding disease, but I've looked and looked and can't find the written warranty for this body ANYWHERE. :D

jmmilliorn
05-12-2011, 09:32 AM
Yes. I could go back. It costs me about $1,000 for a round trip on American. But there is no "reasonable" reason why it can't be done in a major metroplex like Dallas/Fort Worth. There are HUGE medical centers here, too and lots of patients receiving Rituximab--just not many for Wegener's. The insurance company is being a "horse's patootey" about it. I will try again tomorrow, and if we can't work it out, I can always go back to Ohio. My last week-long stay in the CC was $69,000+. Looks like the insurance company, CIGNA would love to save $ by having me infused as an outpatient in 4-6 hrs. at any number of cancer centers or hospitals in the area.

Chris G
05-14-2011, 10:04 AM
Had my first rtx infusion today! It went absolutely smooth - no reactions, no need to slow the drip. I was in at 8, out by 2. Next time will be faster. That's the good news. However.........I really don't feel well!!! During the infusion, my sinuses became MORE stuffy than usual, and my eyes are really puffy now. My head feels pressurized, I have a headache, and I'm lightheaded and kind of loopy. Is this perhaps some tiny reaction of some sort?

But, I really can't say I felt all that well this morning when I went in, either. So maybe it's just a little wg flare - or a combo. Maybe I'll know more tomorrow.

My stomach is starting to feel very unhappy. I think some of you mentioned stomach upset after rtx. Maybe we should start a rtx journal & share our expertise with the medical professionals!:rolleyes1:

jmmilliorn
05-14-2011, 11:05 AM
I like your idea for an rtx journal. I had my first infusion two weeks ago at Cleveland Clinic as an inpatient. I didn't have any of the sinus or stomach symptoms that you did. I was a little concerned about all the lethal side effects listed for the drug and as the IV drip started, I could feel a cold chill come up my arm and spread across my torso to the other side and down the other arm. I have to admit that I had a sudden panic attack as I envisioned skulls and crossbones and the spread of poison going on inside me. But after about 30 minutes, I didn't seem to be as nervous about it and relaxed. I've felt a little better every day since--now two weeks and I am due for my 2nd infusion. Just waiting on the insurance company to approve it and they are balking and dragging their feet. I want to take the 2nd infusion here in Texas where I live as an outpatient if possible. I think most if not all of the Methotrexate is out of me by now, and I was not tolerating it well. I felt weaker and sicker the whole time I was on it and eventually broke out in red rashy spots all over my torso which alarmed my doctor and precipitated the change. I'm glad it did, since the RTX seems to be working better and faster. I'm still weak and short of breath, but feeling more alert, less shaky and stronger in the legs.

ScreaminMeanie
05-14-2011, 11:44 AM
Chris, I've been a little bit the way you described all three times so far - it doesn't hit until a couple hours after I get home. Personally, I think it's a solumedrol crash.

It was the worst after my first infusion. Not as bad after the second one, and much less so today after the third one.

Sangye
05-14-2011, 12:18 PM
Had my first rtx infusion today! It went absolutely smooth - no reactions, no need to slow the drip. I was in at 8, out by 2. Next time will be faster. That's the good news. However.........I really don't feel well!!! During the infusion, my sinuses became MORE stuffy than usual, and my eyes are really puffy now. My head feels pressurized, I have a headache, and I'm lightheaded and kind of loopy. Is this perhaps some tiny reaction of some sort?

But, I really can't say I felt all that well this morning when I went in, either. So maybe it's just a little wg flare - or a combo. Maybe I'll know more tomorrow.

My stomach is starting to feel very unhappy. I think some of you mentioned stomach upset after rtx. Maybe we should start a rtx journal & share our expertise with the medical professionals!:rolleyes1:
Chris, I don't like the sound of most of those symptoms you're having tonight. That sounds like it could be an allergic reaction. I think it's best if you call your doctor to find out for sure.

I don't think the stomach upset is a problem though. On the night of my infusions I get a few hours of nausea. I don't throw up, but I feel like I could. It goes away by bedtime. That's a normal reaction.

Sangye
05-14-2011, 12:32 PM
I keep a rtx journal and it's very helpful. I always forget that I get the nausea that night!

jmmilliorn
05-14-2011, 12:52 PM
I use the iPhone app, Momento. I write in it every day any symptoms or dr. appointments. It really helps sometimes when you need certain info.

ScreaminMeanie
05-14-2011, 10:46 PM
Chris, how are you feeling this morning?

ThirstyRoots
05-15-2011, 02:02 AM
Rituxan likely saved my life! I am currently waiting for the 4th dose of 4. I ended up two and a half weeks ago in the ICU with extensive bleeding from my lungs. Was paralyzed, sedated and ventilated to stop the bleeding, blasted with solumedorol, and treated with plasma exchange and rituximab. Will take awhile to recover, but outside of feeling weak from the ICU, I feel good. I think my relapse is finally under control after 5 months of developing secondary infections while attempting cyclophosphamide treatment.

CODavid
05-15-2011, 02:45 AM
Hello. I am scheduled for 4x rounds of RTX. I am hoping this is a godsend also. Good advice above. Thanks.

Chris G
05-15-2011, 05:44 AM
Feeling much better today. I was really feeling foggy & out of it last night. Slept well, but woke with a headache - motrin took care of it. Did some chores around the house this morning while I had some energy. Feeling tired now, but I was up at 5:30 for some unknown reason. I hope to keep feeling better each day like many of you have said you did!!! :smile1::smile1:

Sangye - I'll tell them before my next infusion, about my stuffiness and foggy feeling.

Mike - have you made any progress with the #@%*! insurance company?

jmmilliorn
05-15-2011, 07:15 AM
I think the only progress I can point to is that I've got the doctors doing the battle for me with the insurance company now. I wasn't getting anywhere. The cancer infusion center my doc wanted to use says they ARE in network with CIGNA, but CIGNA claims they aren't. They tried to send me to a podunk country hospital, but the hospital admitted they don't have anyone qualified to administer the drug. And they don't stock it--would have to order it. I hope the approval comes Monday. I feel better since the first infusion--no more side effects from methotrexate and I feel like a fog has been lifted. But I am still very SOB and shaky feeling. Hard to describe, but definitely sorta tipsy-drunk-like, or wobbly. Not sure if it is the WG or one of the many medications. Hopefully it will go away as I reduce steroids and after the 2nd RTX infusion--if it ever gets approved. I'm down to 17.5 mg Pred/day (sometimes I only take 15). I'm anxious to get off it. I'm supposed to reduce 2.5mg every two weeks, but I'm trying to shorten that a little. I've heard than around 7.5 mg/day I may actually start losing weight again or at least be able to. But as long as I'm SOB, I don't see how I can do much of anything aerobic to speed that along. Plus, thanks to the WG, I have a blood clot in my right leg, too. If I start walking a lot, assuming I have enough oxygen to walk, I'm not sure how my right leg will react. I keep it elevated when not active and it goes down some at night, but swells during the day even with compression socks. At least I'm wearing shoes again. The foot doesn't swell much any more, just the leg. From the ankle to just above the knee. The clot is behind the knee and is about a foot long they said. Finally got my Coumadin dose adjusted just right. I'm rambling, I can tell. Chalk that up to the steroids. My wife says I never shut up, but I can't seem to help it. Thanks for your interest in my condition. I believe you do a lot of good especially for new forum members like me because of your extensive experiences and lessons learned the hard way. Muchas gracias.

jmmilliorn
05-15-2011, 07:21 AM
Chris,
I go to bed at 10:30 to 11:00 every night and it takes a long time to get to sleep. Then I wake bolt upright at 3:00 AM like a rocket. Can't get back to sleep. It is the steroids I am sure. I run out of gas every afternoon, but if I take naps in the afternoon, I sleep even less at night. Reducing the steroids hasn't helped yet. Guess I've been on them too long.

jmmilliorn
05-15-2011, 07:24 AM
I asked my Cleveland Clinic doc why I was getting 2 rounds of RTX and others were getting 4. She said that I was on the program like the RACE Study. She said I could read about it in the New England Journal of Medicine. You either get 2 infusions of 1000ml or 4 smaller ones. She said it was less expensive and just as effective to take two--at least in my case. There must be a reason why some docs do 4 instead of 2 for their patients or the insurance companies would rather take the less expensive route. I learned on the forum that the RTX is $10K for a 1000ml bag. I had no idea.

Sangye
05-15-2011, 08:36 AM
I'm down to 17.5 mg Pred/day (sometimes I only take 15). I'm anxious to get off it. I'm supposed to reduce 2.5mg every two weeks, but I'm trying to shorten that a little.
Mike, please do not hurry along that last part of the taper. It's one of the most important parts. You can easily cause a Wegs flare or cause an adrenal crisis (a life-threatening condition). Your doctor's taper recommendation is good.

jmmilliorn
05-15-2011, 08:54 AM
Oh, all right. Dang it! I got the idea though from someone else's post.

Chris G
05-15-2011, 09:39 AM
I think the only progress I can point to is that I've got the doctors doing the battle for me with the insurance company now. I wasn't getting anywhere. The cancer infusion center my doc wanted to use says they ARE in network with CIGNA, but CIGNA claims they aren't. They tried to send me to a podunk country hospital, but the hospital admitted they don't have anyone qualified to administer the drug. And they don't stock it--would have to order it. I hope the approval comes Monday. I feel better since the first infusion--no more side effects from methotrexate and I feel like a fog has been lifted. But I am still very SOB and shaky feeling. Hard to describe, but definitely sorta tipsy-drunk-like, or wobbly. Not sure if it is the WG or one of the many medications. Hopefully it will go away as I reduce steroids and after the 2nd RTX infusion--if it ever gets approved. I'm down to 17.5 mg Pred/day (sometimes I only take 15). I'm anxious to get off it. I'm supposed to reduce 2.5mg every two weeks, but I'm trying to shorten that a little. I've heard than around 7.5 mg/day I may actually start losing weight again or at least be able to. But as long as I'm SOB, I don't see how I can do much of anything aerobic to speed that along. Plus, thanks to the WG, I have a blood clot in my right leg, too. If I start walking a lot, assuming I have enough oxygen to walk, I'm not sure how my right leg will react. I keep it elevated when not active and it goes down some at night, but swells during the day even with compression socks. At least I'm wearing shoes again. The foot doesn't swell much any more, just the leg. From the ankle to just above the knee. The clot is behind the knee and is about a foot long they said. Finally got my Coumadin dose adjusted just right. I'm rambling, I can tell. Chalk that up to the steroids. My wife says I never shut up, but I can't seem to help it. Thanks for your interest in my condition. I believe you do a lot of good especially for new forum members like me because of your extensive experiences and lessons learned the hard way. Muchas gracias.

Mike - I have your "tipsy sort of drunk like" feeling all the time. It's really kind of scary for me to deal with. Do you chalk that up to mtx causing it for you? I haven't been able to decide if I think it's the wg, or the mtx doing it to me. I've kind of come to the conclusion that it's both. The day after mtx is almost always a "drunken" day for me. And yet, I might also get the feeling on any random day of the week, but on those days, it seems to coincide with sinus/ear pressure. It's to hard to concentrate, speak, read, and sometimes scary to drive.

I sure hope you can get your 2nd rtx asap. It can't be good to throw the schedule of by too much.

Sangye
05-15-2011, 09:48 AM
Oh, all right. Dang it! I got the idea though from someone else's post.
LOL It might have been from someone with more experience tapering pred. Dr Seo lets me taper however I want at this point. I've messed it up in the past, and had doctors mess it up. Now I know my signs/symptoms very well and know how pred affects me. I hope you do not gain this experience, and that you sail off pred and never go back on it again.

ScreaminMeanie
05-15-2011, 10:17 AM
I get a bit that way after my mtx day, too! I never really put it together until both of you mentioned it. Chris and Mike, are you both still taking mtx along with the rtx? My doc said she wanted me to stay on the mtx "a few more weeks." I'm going to ask her next week exactly what that means........

Chris G
05-15-2011, 10:29 AM
I get a bit that way after my mtx day, too! I never really put it together until both of you mentioned it. Chris and Mike, are you both still taking mtx along with the rtx? My doc said she wanted me to stay on the mtx "a few more weeks." I'm going to ask her next week exactly what that means........

Yes, I'm still on the mtx, and my doc said "a few more weeks" too! Which of course to me meant 2. But when I called to clarify, she told me they want to keep me on the mtx while we taper me off pred - which really means a few more MONTHS - cause I'm still at 22.5mg pred! Only change one drug at a time - I understand that. YES, I want off the pred as fast as possible, but I want OFF the mtx too!! I hate the drunken side effect.

I think I'm going to ask for a compromise........I'd like to reduce the mtx slightly, and go back to oral (I'm currently at 25mg injectible). When I was at 20mg oral, I didn't have the "mental" side effects, and I never had any nausea with it. It think she'll let me do that, and we can both be happy.

What are your mtx and pred doses?

I think Mike said he became allergic to mtx......

ScreaminMeanie
05-15-2011, 11:24 AM
I started on 20mg oral mtx last June. I've been at 5mg pred since December. When I tried to get below that was when my symptoms started to get bad, so I went back up to 5mg in January. That didn't help, so in March I went from 20mg oral mtx to 25mg injectable. After four weeks, symptoms weren't improving (actually getting worse), so that's when we decided to do the rtx. Still doing the 25mg injectable mtx. Except for the "tipsy" feeling the next day, the side effects have actually been less with the injectable. It's just not working!

pberggren1
05-15-2011, 11:50 AM
Well Chris, if your doc is good and knows Wegs then I will say go with his take on staying on the mtx while tapering off the pred and not reducing it either, but only he can make that call.

jmmilliorn
05-15-2011, 12:06 PM
No. I had a toxic reaction to MTX. Quit taking it on April 23 and started on RTX 4/28. I broke out in a bad torso rash and felt awful. I was getting sicker every week with MTX. After the RTX I have heard I may go on AZO? for maintenance. By the way, Chris, usually my shaky, dizzy, lighht-headed, rubber legged feelings go away late in the afternoon and I start feeling more "normal".

pberggren1
05-15-2011, 12:09 PM
I will be going to AZA after the rtx. I have not started the rtx yet but hope to soon if the drug plan ever approves funding for it.

Chris G
05-17-2011, 03:55 AM
I started on 20mg oral mtx last June. I've been at 5mg pred since December. When I tried to get below that was when my symptoms started to get bad, so I went back up to 5mg in January. That didn't help, so in March I went from 20mg oral mtx to 25mg injectable. After four weeks, symptoms weren't improving (actually getting worse), so that's when we decided to do the rtx. Still doing the 25mg injectable mtx. Except for the "tipsy" feeling the next day, the side effects have actually been less with the injectable. It's just not working!

Meanie: You and I seem to be in exactly the same boat, except my pred is still annoyingly high. :mad1:

I wonder now (and will ask at my next appt)........since we know the mtx is not working, what will we do in case of a flare in the coming months? Rtx infusions every 6 months for the rest of my life.....not a realistic option. I can't take imuran.... mtx doesnt work.........what's left? Cellcept??? Any others??

On a side note, I'm still trying to be patient, waiting for the rtx to kick in. I feel like my sinuses are less stuffy, and I have much less crusting, and no bleeding for the last few days. All good signs, I know.......but what I really want is SOME ENERGY!!!

ScreaminMeanie
05-17-2011, 03:58 AM
I noticed an improvement in my energy level towards the middle of the week after my first infusion. It has continued to improve through the subsequent two infusions, and I'm hopeful that after my 4th one this week, it will get even better. I totally hope that happens for you, too!

Chris G
05-17-2011, 04:05 AM
Well Chris, if your doc is good and knows Wegs then I will say go with his take on staying on the mtx while tapering off the pred and not reducing it either, but only he can make that call.

Yes, I promise to be a good girl and do as I'm told. I just want a SLIGHT reduction of the mtx, so I don't feel drunk the day after. I've had days where my boys are in the car with me, and I suddenly get loopy, and think.......OMG, I shouldn't be driving.

Chris G
05-17-2011, 04:13 AM
I noticed an improvement in my energy level towards the middle of the week after my first infusion. It has continued to improve through the subsequent two infusions, and I'm hopeful that after my 4th one this week, it will get even better. I totally hope that happens for you, too!

Thanks, that's good to know.

Regarding the drunken mtx side effect.......how much folic acid do you take, and on what schedule? I take 1mg/day every day. In the last couple of weeks, I started to take 2mg the day after my injection, and I swear it's been helping a little with the drunken feeling. I was researching mtx to find out whether it was really the cause of my drunken feeling, and came across the "what to do in case of an overdose".......the antidote for overdose is FOLIC ACID, so I thought, well maybe a little extra after my injection would help with the temporary increased side effects. I mentioned it to my doc & she didn't say I should stop doing it.

jmmilliorn
05-18-2011, 10:48 AM
I'm really discouraged today. I've felt better every day since my RTX infusion and getting off the MTX which was causing me a lot of problems. Then today I woke up weak in the legs (thighs mostly), with my first headache in months, and sore shoulder sockets (a first). I've just sat in a chair all day watching TV and sleeping off and on. Don't have enough energy to do anything. The cough is worse again, I'm hoarse again after several days of improvement, and I'm gasping for air. Just can't get a deep breath. I just can't believe I did such a 180 turnaround for the worse. Didn't really know what to expect with RTX, but everyone else seemed to be feeling better after their infusion, and I was too, at least until today. I guess it isn't linear. It's been 3 weeks since my first infusion of RTX and they still haven't schedule my 2nd. Hope the time lag isn't critical...???

Sangye
05-18-2011, 10:55 AM
Mike, that is not good at all. Clearly the Wegs is becoming very active very quickly. Gasping for air makes me wonder what is happening in your lungs. You need to get to an ER immediately for a chest x-ray and/or CT scan. You could be having lung hemorrhage or blood clots in your lungs. You need to tell the ER doc that Wegs makes us 23 times more likely to develop clots. This is not common knowledge to MDs. (They'll find the study with a quick google) Please get to the ER.

jmmilliorn
05-18-2011, 11:02 AM
I don't think so. Maybe I didn't describe my symptoms well. I've never had any really bad WG like some of you--yet. I'm talking about gasping for air like hyperventilation. Maybe I'm just tense about my delayed infusion or waking up feeling worse instead of better. I don't know anymore. I'm tired of analyzing my every waking moment trying to figure out if I'm getting worse or better. I appreciate your concern, and can understand your caution after reading some of your comments about what you've been through. Better safe than sorry in most cases.

Sangye
05-18-2011, 11:23 AM
That was the same symptom I had when my lungs were full of blood clots. The sudden appearance of weakness and joint pain is not a good sign. I understand about being tired of constantly analyzing symptoms--hard to know when it's anxiety or really Wegs. In your case, right now I think it's really Wegs. I still think an ER visit is in order. If a CT shows worsening of the lungs you can use that to demand rtx faster.

ScreaminMeanie
05-18-2011, 12:06 PM
Chris, I'm also taking 1mg/day every day. My doc already suggested once that I might up my dose when I complained about my hair drastically thinning. I'm going to bring that up again when I see her next week and suggest the same thing you're doing. If it'll help with the drunken feeling (this week it was yesterday - sometimes it's the day after, sometimes it's two days after, sometimes three) AND the hair loss, I am so in.

Mike, I agree with Sangye. You need to get to the ER and get some answers. Like she said, hopefully this will get the rtx started again. Sounds to me like you need to find a good rheumy where you are who can consult with CC. From things I've been hearing from people on here lately, it seems like the 4x treatment is doing a better job than the 2x, especially if you get off schedule like you've done.

Chris G
05-19-2011, 01:50 AM
I had an absolutely horrible post mtx day yesterday! The 2mg folic acid did not help a bit. I was very disoriented, weak, tired, felt nauseous at 2am Tuesday morning, AND my chest is really achy/sore when I take a deep breath (and I'm a little short of breath). The chest achiness is not a new symtpom - I've had it for months, but it was worse yesterday......then went away around 4pm. It's back again today. Yes, I know I should go somewhere and get it checked out - but dammed if I'm going to ER, and try to explain wg to a group of docs who have never heard of it. I may try to get in to see my GP today or tomorrow.

I do not yet feel any real improvment from my 1st rtx infusion. I know it's been less than a week, but I was hoping for SOME sign of improvement. I guess my nose is a little better......that's about it. The mtx is making me feel worse and worse with each injection. If I continue to feel so crappy from mtx, there's no way I'll know when the rtx does finally kick in!!

Sangye
05-19-2011, 01:53 AM
ChrisG, I posted to you on another thread. The ER docs don't need to know about Wegs to check for an allergic reaction to mtx called pneumonitis. Mtx is a well-known drug and this is a well-known side effect. Please don't wait.

Daggar
05-19-2011, 01:55 AM
No kidding. I came pretty darned close to divorcing my husband last summer after he made a remark about "stuff like this wouldn't happen to him because he has good genes." *smack* ;)

I sometimes think that most people who aren'tsick want to make any illness the fault of those who are sick so they feel safe. Bottom line is, yes, it's best to live as healthy a lifestyle as is reasonable for your circumstances, but it's still no guarantee that nothing bad will happen to you.

Holy crap.... if I said something like that I'd be picking most of my genes up off the floor and sleeping with one eye OPEN!!:w00t:

Daggar
05-19-2011, 01:57 AM
Why is it they give rtx and mtx together?

Sangye
05-19-2011, 01:59 AM
Holy crap.... if I said something like that I'd be picking most of my genes up off the floor and sleeping with one eye OPEN!!:w00t:
ROTFL Hilarious http://www.smileyhut.com/laughing/rofl.gif (http://www.smileyhut.com)

Chris G
05-19-2011, 02:05 AM
Why is it they give rtx and mtx together?

I'm not sure they do it with everyone - I think it depends on how high the mtx, and pred doses are when you start rtx. I'm stil on pretty high doses of both....... currently on mtx 25mg, and 20mg pred. They only want to change one drug at a time, and they said it's more important get off pred first.

ScreaminMeanie
05-19-2011, 04:08 AM
For RA it's typical to get both drugs. I'm going to grill my doc about it next week to see if I can get some solid answers as to why weggies should stay on the mtx. I'm okay with staying on the 5mg pred daily, although I think a lot of the times I feel bad it's because I've "used up" my daily dose of pred, and my body is not making any more to deal with the added stress.

Sangye
05-19-2011, 04:21 AM
In the RAVE trial, after the 4 infusions of rtx they transitioned patients onto either mtx or imuran for 2 years. If there was no increase in Wegs activity, they were then taken off all meds.

I have the same problem with the pred, Screamin'. I do "okay" on 2.5mg unless I have to rush or have some extra hit of stress. Then it's like I "spend" it all at once. I'm seeing an endocrinologist at JHU who specializes in adrenal issues in July. I hope she can help me figure out what to do.

jmmilliorn
05-19-2011, 08:33 AM
I can't believe they are making you take both medications. Is that right? I'm not surprised you are feeling worse.

jmmilliorn
05-19-2011, 08:35 AM
I'm only getting two infusions followed up by Azathioprine.

ScreaminMeanie
05-19-2011, 12:16 PM
In the RAVE trial, after the 4 infusions of rtx they transitioned patients onto either mtx or imuran for 2 years. If there was no increase in Wegs activity, they were then taken off all meds.

I have the same problem with the pred, Screamin'. I do "okay" on 2.5mg unless I have to rush or have some extra hit of stress. Then it's like I "spend" it all at once. I'm seeing an endocrinologist at JHU who specializes in adrenal issues in July. I hope she can help me figure out what to do.

I can't wait to hear what she has to say. I'm so ready to try tapering my pred again, but I know I can't until we see how the rtx is doing for me another month or so out from now. I'm going to bring it up at my appointment next week anyway, so I can at least have some fun anticipating what it might be like for my adrenal system to work on its own. My first time around with this, I was on 75mg/day of Medrol for 10 months before I started even trying to taper (back in the dark ages of WG treatment protocols). I had no problem coming off it that time. I also went into remission and stayed in remission for close to 20 years. It really pisses me off that my body is reacting differently this time!

ScreaminMeanie
05-19-2011, 12:17 PM
Mike, are you making any progress yet getting your 2nd dose of rtx lined up?

jmmilliorn
05-20-2011, 10:34 PM
Mike, are you making any progress yet getting your 2nd dose of rtx lined up?
I'm getting the 2nd infusion on Tues. 5/24--nearly 2 weeks late, but at least it was finally approved and scheduled.

delorisdoe
05-20-2011, 10:40 PM
that is great but i have to say MORONS!!!!

ScreaminMeanie
05-20-2011, 10:49 PM
Oh that's great, Mike!

(And I agree with Leigh - MORONS! By delaying your 2nd infusion, they may very well have created a situation where you will have to do another round of treatments - how idiotic is that?)

Chris G
05-21-2011, 11:02 PM
Meanie - How did your last infusion go?!?! How are you feeling today?

ScreaminMeanie
05-21-2011, 11:38 PM
It went without a hitch - they finally went with the "weeks 2-4 protocol" because I'd gone two weeks without even a hint of a problem, so I was done in about 3 hours. Didn't feel as bad last night as I did the other three times but still went to bed early from feeling weary. Slept even less than usual. Otherwise, feeling so good today that I have to remind myself not to overdo it, because I know part of it is just the solumedrol, and the last time I overdid it on a steroid high (last Saturday), I paid for it for the next 4 days. LOL

Sangye
05-22-2011, 12:16 AM
Glad it's over and you didn't have any problems! :thumbsup:

Chris G
05-28-2011, 11:22 PM
I had my 2nd rtx infusion yesterday (2nd of 2). The infusion went smoothly. I didn't feel great after it, but not as poorly as I did after the first infusion.

Question: Today, my face looks like I slept in a tanning (i mean burning) bed! It's bright red, warm to the touch, and puffier than usual. I took 2 otc diuretics yesterday, hoping it would counteract the puffiness from the solumedrol, grrrr. I'll drop a few more after I get my other drugs on board. This redness didn't happen after the first infusion. Anyone else have this happen? Is it from the solumedrol?

jmmilliorn
05-28-2011, 11:58 PM
Chris,
I didn't have the symptoms you had. I had my 2nd RTX on Wednesday, but I didn't experience any side effects at all. I felt the same before and after. No redness or puffiness, and I didn't feel sick at all. I didn't the first time either. I guess I was very fortunate. I went in expecting the worst. I think they are going to put me on azathioprine now for maintenance.


I had my 2nd rtx infusion yesterday (2nd of 2). The infusion went smoothly. I didn't feel great after it, but not as poorly as I did after the first infusion.

Question: Today, my face looks like I slept in a tanning (i mean burning) bed! It's bright red, warm to the touch, and puffier than usual. I took 2 otc diuretics yesterday, hoping it would counteract the puffiness from the solumedrol, grrrr. I'll drop a few more after I get my other drugs on board. This redness didn't happen after the first infusion. Anyone else have this happen? Is it from the solumedrol?

ScreaminMeanie
05-29-2011, 12:33 AM
My face is red and puffy most of the time anyway - I was told many years ago I have rosacea, but I think it's the WG. It doesn't respond to rosacea treatments. It's not extreme, but I do wear makeup to cover it up. Otherwise, everyone I encounter tells me my face is red.

The only thing in connection to that that I've noticed wrt Rituxan is that the evening after the infusion, I am NOT red and puffy. The next day it's back to the usual red and puffy thing. So I personally think it's part of the inflammatory response caused by WG. The solumedrol tamps it down for a day, and then it rebounds.

Sangye
05-29-2011, 12:41 AM
I get the red face the day after. It's usually gone by midday. In my case I don't think it's due to the rtx. I took a benadryl to help me sleep the night of this last infusion and I still got the red face. I'm pretty sure Benadryl would have done something if it was an allergic reaction, and the 100mg solumedrol was definitely still working.

I actually get the red face thing a lot. I know some things that trigger it (eg hot showers) but sometimes I have no idea what caused it.

At any rate, make sure your doctor knows what happened since we're all so individual.

Chris G
05-29-2011, 06:53 AM
I get the red face the day after. It's usually gone by midday.

Yep! Sure enough, the redness is gone. The puff is still there of course.....but it never really goes away.