View Full Version : Rituximab

03-31-2010, 06:39 AM
Just wondering if anybody has tried Rituximab first before trying Cyclophosphamide? Any side effects noticed right away?
Also, I know they don't know the long term side effects of Rituximab but they wouldn't be anymore harmful than the Cyclophosphamide right?

03-31-2010, 06:50 AM
Brooke -- the exciting thing about rtx is that its toxicity is much less than ctx. That having been said there have been no long term studies (I believe the study that proved efficacy was only completed in 2009) of it on WG patients, although it has been used in oncology for some time. There is apparently some talk about using it for other rheumatic illnesses less severe than our own, so the docs feel as though it shows a lot of promise. My doc would try rtx before ctx on me for certain.

03-31-2010, 07:09 AM
Thanks Jan, I am glad there is something that is less toxic to use than the ctx. I hope it works!
How is the methotrexate working for you?

03-31-2010, 07:47 AM
I'm only in week 2 and only at a tolerance dose. Last time we tried my liver enzymes spiked and he took me off of it due to impending SS surgery. This time he has dropped the tolerance dosage and I am scrupulously avoiding alcohol and NSAIDs (both of which i was using, in moderation, during the last trial.

Hopefully it will work, but if not, he said he would probably go to cellcept or imuran before rtx.

03-31-2010, 07:55 AM
Brooke, ctx and rtx are 2 different classes of drugs. Ctx is chemo, and Rtx is not (it's a genetically-engineered antibody). The risks of ctx are very well-known since it's been in use for so many years-- for both Weggies and other conditions.

Rtx has been used for at least 10 yrs for Non-Hodgkin's Lymphoma (cancer). In the short-term, it's definitely much less toxic or damaging than ctx. What has yet to be learned about rtx are the risks after using it every few months for years or what happens many years after using it at all. Because of this, the Wegs specialists are using it with due caution. They know it's safer than ctx in many ways, but they respect what is unknown about it.

03-31-2010, 08:01 AM
Good luck Jan with the methotrexate!
Thanks Sangye for the information on rtx and ctx. I hope there isn't anything too worriesome we have to worry about in the future with rtx.

03-31-2010, 08:05 AM
I hope not, either. There's no use in worrying about it, even if we have to take ctx. These are the only options we have for staying alive. Just trying to deal with what's on my plate in the present is enough.

03-31-2010, 08:14 AM
I want to talk to my Rheumy when I see her in June about rtx. I would like to get pre-approved for rtx. I know that she doesn't have any Weggies on it but there is another doc that has one on it I think. I just dread the thought of going on ctx if I flare again. What do you guys think?

03-31-2010, 08:18 AM
When my Wegs doc put me back on ctx last summer, he started the process to get me pre-approved for rtx. He wanted it in case we needed it. I think it's always good to have ready.

03-31-2010, 08:19 AM
Thanks Sangye. That was quick.

03-31-2010, 08:20 AM
Pberggren, never been on ctx and hope I will never have to be. Sounds like rtx is a good thing! When were you on ctx last? Are you in remission? What meds are you currently on?

03-31-2010, 08:22 AM
For the Americans on board, my doc said that insurance companies also seem to be moving past the "you must fail on some other drug before we will authorize rtx" mode. My own insurance (Cigna) requires preauthorization, but rtx could have been the first drug used for my WG, had the doc decided to go that route.

03-31-2010, 08:31 AM
I think I am in remission?

I am currently on 3000mg of Cellcept, one regualr strength Bactrim every day, 10mg of Pred, 25mg of Atenolol, and one 70mg Sodium Alendronate tab once a week.

I was last on ctx in January of 2009.

03-31-2010, 08:34 AM
Is Cellcept similar to methotrexate? Are you on that to keep you in remission? Do you have any symptoms right now Pberggren?

03-31-2010, 08:44 AM
I am currently on 3000mg of Cellcept, one regualr strength Bactrim every day, 10mg of Pred, 25mg of Atenolol, and one 70mg Sodium Alendronate tab once a week.
I would not want to load you up with more pills than you require, but a Calcium/Vit D supplement should probably be added to this. It will help you to avoid Osteoporosis together with the Sodium Alendronate.

03-31-2010, 09:46 AM
Frankly I wish I had been taking calcium the whole time I had been on and off steroids for my (not) asthma. Perhaps it could have saved my bones, but then I never knew the steroids could do such damage (and yet not affect my stenosis or collaspe of the bridge of my nose one bit of course). I have to try pretty hard to not be bitter about this. I'll never know if those times on steroids might have slowed down the progression of my WG, or whether it just weakened my bones with no positive effect. Sigh.

03-31-2010, 11:17 AM
Oh, yes. Please take a calcium/Vit D supplement if on prednisone. I take 2 Caltrate equivalent tabs.

My Rheumatologist said that he hates cytoxin as much as he does prednisone. He goes straight to Rituxan for his Wegs patients who are ready for that level of medication. He says that they are all doing quite well.

03-31-2010, 11:32 AM
Hey Jack:

I do take a Calcium and Vitamin D supplement as well. I didn't mention it on my last post on this thread because I was just listing the Prescription medications. You make a very good point - Calcium and Vitamin D are very important. I take about 1000mg of Calcium Citrate and about 1500 I.U. of Vitamin D every day.


I'm not sure if mtx is similar to CC. I do take CC as a maintenance drug to keep the WG at bay. Right now I just feel fairly tired and wiped out sometimes. I told my boss today that I will only work every other weekend for now and try that out and see how it goes. I work nights so I may have to quit altogether.

03-31-2010, 12:05 PM
Phil, how long have you felt fatigued like that?

Brooke-- Cellcept and mtx are 2 different classes of drugs. CC targets B cells (WBC that makes antibodies) and destroys them. It's not chemo and doesn't have the toxicity of chemo. It was created as an immunosuppressant for recipients of kidney transplants-- to stay on it for life.

Mtx is chemo, though not nearly as toxic as ctx.

Cindy M
03-31-2010, 05:42 PM
Sangye thanks for the information on CTX and RTX. I am trying to get everything straight in my head about the drugs. I think I need a new notebook, I make notes on everything trying to learn more about the drugs especially in normal language that I can understand. Thanks again.

03-31-2010, 06:07 PM
Well Sangye, I think the fatigue thing started back last June when I had the lung infection. Since then it is very inconsistent, even from one day to the next. I just try and not overdo it.

03-31-2010, 06:17 PM
I'll never know if those times on steroids might have slowed down the progression of my WG, or whether it just weakened my bones with no positive effect. Sigh.
If you are anything like the rest of us you would probably have died without the steroids. They have been proved to be an essential part of the treatment for Wegs.
I sympathise with your troubles with osteoporosis - my own loss of bone density is off the chart at -5 and breaking ribs is a constant problem. I live in fear of falling over!

04-01-2010, 12:40 AM
I don't know about that, Jack. Probably all the steroids I had over the course of my "asthma" wouildn't have equaled what some of you had in several months of treatment. I might have had 4 mg/day for month long periods -- less than 10 times in my life. I was on inhaled steroids as well as nosesprays however. Right now my docs are leaning towards a theory of a flare, then a half dozen years of relatively good health and then another flare which ultimately collasped my nose, lead to some sinus troubles and joint pain. No one thinks I've been flaring the whole time. There are no current plans to treat me with steroids, only immunosuppressants.

04-15-2010, 02:15 AM
My insurance denied me Rituxan. I put a call in to the Mayo doctor and I am waiting to hear back to see if we can appeal this or if there is any more information we can send to the ins company. Any advice?
Regardless, I will be doing Rituxan, I am lucky my parents are able to help out financially with the cost- otherwise I would probably have to do the other med.
I was doing pretty good for a while - yes looks like it was because of the high dose steroids I was given in the hospital because last week I started to not feel good. I was coughing a lot over the weekend and very tired. I am on 40 mg pred now for a few days until we can get it figured out when I can start Rituxan.
Is there anything I would need to do before starting Rituxan? Such as, vitamins, blood work, urine sample, anything??


04-15-2010, 02:28 AM
Brooke, had your doctor already submitted an explanation (and records) for why you need rtx? What was the exact reason for denying it?

One concern I have about you doing rtx by paying out of pocket is that your insurance could cancel your policy. Please read your policy very carefully beforehand. You might also consider having a lawyer review your policy for you. Losing your insurance could be devastating.

04-15-2010, 02:43 AM
Sangye~ Yes, my doctor submitted an explanation and I believe my medical records.
The ins lady said the reason they are denying it is that rituxan does not follow medical policy and criteria - whatever that means. I guess Rituxan is not approved for Wegener's Disease, she gave me a list of other medical problems that it does cover.
Why would the ins cancel my policy?

04-15-2010, 02:51 AM
Okay, this is EASY then. The same thing happened to me when I was trying to get Cellcept approved. They said it wasn't "FDA approved to treat Wegener's." My (Mayo AZ) doc submitted tons of paperwork but they still denied it. Several weeks into it I realized Doh! NO drug is FDA approved to treat Wegs. Not even pred! There's no such thing as a "Wegener's drug." They approved it on the spot.

So that's all you have to tell them. Talk to a supervisor. Your Mayo doc may have to send copies of research showing rtx is being used to treat Wegs, to prove that it's not an experimental drug. It's a standard drug being used "off-label" to treat Wegs.

Insurance companies will look for any loophole to cancel your policy if you've been diagnosed with something costly like Wegs.

04-15-2010, 02:56 AM
Sangye nailed it before I could get here! That's absolutely right -- nothing is approved for WG...therefore everything's on the table. Not even the cheap stuff like mtx is approved for WG! They just let you get it because it costs pennies a pill.

Sangye, I sent you a PM about a med issue a friend's child is having; appreciate it if you could have a look.

04-15-2010, 03:03 AM
Oh thanks Sangye!!! I think I will call the ins company now!! I will let you know what they say :)

04-15-2010, 03:08 AM
Jan - thanks to you too!

04-15-2010, 03:15 AM
I am going to have my doctor call - the ins lady said that Rituxan for Wegener's Disease under their medical policy is investigational and is not a covered benefit. GRRRR - I have wellmark blue cross blue shield for ins.

04-15-2010, 03:21 AM
Rtx is not investigational. She's wrong. It's being used as an alternative to ctx. Ask her how she defines investigational. I bet you it's about the "Not FDA-approved for Wegs" thing.

04-15-2010, 03:25 AM
Do you think I should call back? Or have my doc call? She said not FDA approved too. I spoke with another lady last week, and they both told me its investigational.

04-15-2010, 03:54 AM
I think you should call back and talk to a supervisor. Tell them exactly what I wrote. (Not being egotistical, just saving you time) Even though my doc was doing everything he could at the time, it was my own calling that got it approved.

Ask them if pred, ctx, mtx, imuran, Cellcept are FDA approved for Wegs. They're not. Nothing is.

04-15-2010, 04:11 AM
You are not being egotistical at all, just helping me out thanks!!
I asked about speaking to a supervisor, she said that a supervisor wouldn't be able to do much different as far as approving it. Would it be the person on the phone that approves it for me? I wonder if I send some research about Rituxan and Wegener's if that would work.
Do you have a diff ins company? Would that be the reason or should any ins be able to work? Did you fail on Ctx first? Would that matter?

04-15-2010, 04:21 AM
I even told her on the phone, I said so what is approved for Wegener's Disease? She said she can't look that up.

04-15-2010, 04:25 AM
Sometimes you just feel like you want to reach through the phone and strangle someone!!!!

04-15-2010, 04:28 AM
You got that right!!

Sometimes you just feel like you want to reach through the phone and strangle someone!!!!

04-15-2010, 04:28 AM
They always say a supervisor won't be able to do anything different. Not true. I've often had to ask for a supervisor, then THEIR supervisor, etc... when dealing with big companies of any type.

If it comes down to sending research, leave that to your Wegs doc. They'll know what to send. I don't think it will, though.

I had a different insurance company but they all work the same way. I did fail on ctx and I'm allergic to mtx. However, that's not the reason they're giving you for denial.

Don't give up-- they're counting on you to do that so they can save money. Insurance companies make tons of money denying claims and services they should approve. They count on people being too confused or too worn out to appeal.

There are so many ways they could cancel your policy or make your life worse if you pay out of pocket for rtx. If you had something happen that required further intervention--hospitalization, etc...-- as a result of the rtx, they might deny that claim. If they're calling rtx experimental, then your taking it could void your policy.

04-15-2010, 04:33 AM
Thanks, I will not give up. I am going to wait for the Mayo doc to call me back - see if they get anywhere. I will let you know how things pan out.
Thanks for all of the great information.

04-15-2010, 04:37 AM
You're welcome. You deserve to be treated with the least toxic drug. Go get 'em. :)

04-15-2010, 08:15 AM
Brooke -- I will give you one example - not health, but insurance related nonetheless, that proves Sangye's point.

We had a flood that ruined our (finished) basement. An idiotic adjuster came out, took some pics, asked some questions. He called me a week later and said, "We have input everything and we are sending you a check for $7,102 tomorrow. Well, I knew that basement was worth twice as much, told him to keep his check and told him to send me the itemized list. It took me six months but I challenged most everything on the list. When we got close to $20K he said, "If I send you a check for $20K will you promise to never call me again." I accepted gladly.

Just keep following things up the line and you will get it approved. The squeakly wheel gets the grease. I wouldn't take anything with WG that insurance hadn't approved -- too risky because if something happens they could disallow all claims resulting from it.

04-16-2010, 12:17 AM
Thanks Jan! I will not give up on this.
The insurance lady told me yesterday that they do not approve anything that is not FDA approved - not even cytoxin is FDA approved - so I don't know how someone would even get approved for that????
Anyways, my dad is a physician and he put a call into the medical director of the insurance company and that guys will be calling us tomorrow (Friday) with some answers. He is thinking we might be able to avoid the appeal process.

04-16-2010, 12:35 AM
Brooke--what drugs have you been on already?

04-16-2010, 01:32 AM
Methotrexate, Prednisone, Zoloft, Folic Acid and Bactrim. That is what I am currently on and that is all I have ever taken (except other antibiotics for "infections") since being diagnosed with Wegener's Disease. Since I am failing on the Methotrexate, doc wants me on Rituximab.

Col 23
04-16-2010, 01:59 AM
Hope everything works out okay Brooke, Thinking of you.
I wont even begin to comment. I think Andrew would kick me of the site for profanities.
all the best Col 23

04-16-2010, 02:00 AM
Assuming your insurance company has paid for the mtx and pred, they have contradicted their own policy. They have no obligation to cover experimental drugs and most won't. But they must cover drugs that are non-experimental and are the standard of care for a diagnosis, even if no FDA-approved drug exists.

When I told my insurance company that they had paid for ctx, pred and mtx without a problem and that none of them were FDA-approved for Wegs, at first they said "Well, you might owe us all that money back." NOT TRUE. But just be prepared that they may say that at first.

04-16-2010, 02:15 AM
Thanks Col23, I'm about ready to use some profanities myself!

Wow, Sangye - you have so much great info! Awesome points I never even thought of, thanks so much. Yes, ins has covered the methotrexate and pred. This is where I want to swear now!!!

04-16-2010, 02:17 AM
One more thing - is it different if something is not FDA approved at all vs not FDA approved for Wegener's Disease?

04-16-2010, 03:27 AM
Sure, but all of the drugs that we are talking about are FDA approved...none of them are approved specifically to deal with WG. I don't know whether any insurance companies would approve non-FDA approved drugs -- you might be talking about things like supplements. The drugs coming out of 'big pharma' are FDA approved.

Your insurance company is balking at the cost of rtx, which is extremly expensive. They didn't object to mtx because it is inexpensive.

04-16-2010, 03:45 AM
So Rituximab is FDA approved, just not for Wegener's Disease, correct?

04-16-2010, 03:49 AM
absolutely. You can look it up. It has been used to treat cancer for some time.

04-16-2010, 03:53 AM
Ok thanks, just wanted to make sure I was understanding correctly.

04-16-2010, 04:05 AM
When the FDA approves a drug, it approves it for a particular disease or condition. However, docs are able to prescribe the drug to treat other conditions. That kind of use is called "off-label" prescribing. Perfectly legal and very common.

Ctx is FDA-approved to treat certain types of cancer. It's used off-label to treat Wegs. Rtx is FDA-approved for 2 types of cancer and Rheumatoid arthritis. It's used off-label to treat Wegs and several other diseases.

If it weren't for off-label usage, Weggies would have no drugs at all. Every drug we take is used off-label.

Drugs that are not FDA-approved yet are considered experimental.

04-16-2010, 04:25 AM
Sangye, thanks again for the information on insurance and medicines. This is all very important, because one of us is probably going to go through the same thing that Brooke and Sangye have gone through with insurance/other stuff. This is great that we are so active on this site and respond to each other and give great info! Love you guys!

04-16-2010, 05:14 AM
You're welcome. If insurance is going to challenge rtx, this is the most likely way they'll do it. I'm glad I can share what I learned and hopefully save others time and stress.

04-21-2010, 12:28 AM
I'm still waiting to hear from ins company. We sent over another letter, apparently they didn't even get the first letter from the Mayo Clinic Doctor. I will let you know as soon as I hear something.
Sangye - how long did the whole process take for you?

04-21-2010, 12:38 AM
Aaaaargh... isn't it amazing that so many insurance company faxes work just fine when signing up new customers, but just can't handle those prior authorization letters?

The Cellcept debacle went on 3 weeks before I realized what the issue was. When I told them there is no "Wegs drug" they authorized it on the spot.

They have an "Expedited Prior Authorization" process for things like this. It's usually 24-48 hrs to get an answer. Assuming that the fax machine *cough cough* works. Double check that they're doing it that way.

Col 23
04-23-2010, 02:50 AM
Love to know how you got on Brooke.
Col 23

04-23-2010, 02:59 AM
Of course I am still waiting. I spoke with a lady yesterday, she said she needed me to type a quick note saying that I am appealing their decision. So, I did that and faxed it over directly to her. I called her this morning to see if she received my fax, she said yes and I guess we didn't need that letter so we are starting the appeal process! Grrrr - she said she put a rush on it (however you do that) and she will call me as soon as she hears something. I asked her if it would be today, and she said she is hoping it will be today.
Yesterday she said - if anything, like I need the medication right now, maybe I can buy it and appeal afterwards.

04-23-2010, 03:11 AM
Brooke, don't wait for her call today. Call them. I've lost a lot of time waiting for calls that never come.

The "just pay now and we'll pay you back later" scheme is very risky. They have no legal obligation to make that prior authorization retroactive if they grant it. You'll be stuck with the bill and also the risk of losing insurance like we mentioned before. Anyway, there's no way to just buy the rtx. It's billed at the time of infusion, along with all the associated costs.

Keep at it, Brooke. Tenacity wins the game with insurance.

04-23-2010, 03:17 AM
Thanks Sangye,
I will keep calling!

Col 23
04-23-2010, 03:40 AM
Do you have a Local Government Minister or Ombudsman who could expediate this. This is disgraceful.
Best of Luck Brooke - I hope this gets resolved in a positive way for you. Its such a waste of your much needed energy.
The squeaky wheel gets oiled so keep at em..
cheers Col 23

04-23-2010, 04:33 AM

Col you don't understand how it works here it the States. It's every man (and woman) for themselves. Hopefully the new healthcare measures will change that a bit.

Brooke, definitely keep calling -- that's the order of the day with insurance.

04-23-2010, 04:43 AM
Persistence Brooke, and you will beat this insurance company. Hope to hear today!

04-23-2010, 07:33 AM
RITUXIMAB APPROVED!!!!!!!!!!!!!!!!!!!! YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Insurance is sending out a letter to me tomorrow saying it is approved so I suppose I will receive that letter on Saturday or on Monday. Then I go from there as far as setting up my appointment at the clinic!
Thanks everyone (especially Sangye) for all of your advice and listening to me! I kept calling and yippie skippy!

04-23-2010, 08:00 AM

04-23-2010, 08:32 AM
WHOOYA!!! Wow, this really made my day. :D :D :D

I'm so proud that you persisted, Brooke. You get the Tough Cookie Award for today. One day your experience will help you guide someone else to get the drugs they need.

04-23-2010, 09:13 AM
I might add, this is something I learned today from you guys. I am so glad that people like us make dreams come true! We our Wonder Weggies! Ok, I have lost it. I blame it on Prednisone. :)

04-23-2010, 09:25 AM
Congratulations, Brooke! Way to go!

04-23-2010, 12:39 PM
Brooke, there's no need to wait for the letter to make your clinic appointment. They will bill your insurance for the procedure and the charge for rtx will go through. But definitely keep that authorization letter!

04-23-2010, 04:56 PM
Brooke, you go girl!!!! Go kick some more ass!!!

04-24-2010, 12:44 AM
Thanks everyone! It was great news to hear! I will call today about getting my appointment set up.
I want to start a thread (maybe there has been one started already) about Rituximab - any and all information we can get about it. I want to hear about others that have tried it and hear what they thought, good or bad experiences and why they had to take it.
Phil - you are funny, I will kick some more ass, Wegener's ass to be exact!! ahaha.

04-24-2010, 03:01 AM
Phil - you are funny, I will kick some more ass, Wegener's ass to be exact!! ahaha.

We'll call it KWA time (Kick Wegeners Ass). Brooke, it's KWA time...GO GIRL!!!