Rituximab

[elephant]

Jack I am on a generic cellcept called mycophenolate mofetil, I was on cellcept the brand but it went generic and insurance will not pay for it unless your doctor writes a novel to the INS com. This drug is from the pharmacy :TEVA it comes in a pretty oval purple pill, number imprinted 93 on one side and the other side is 7477. I take two 500mg pills twice a day, so 2000 mg a day. Yea, I was down to 5 mg of prednisone and now I am up to 10 mg. I am taking cyclosporine 100 mg a day and the renal doctor and I are trying to get me off it in four months.
Jack what company makes your mycophenolate? How much do you take? This also covers your kidney transplant too? You really inspired me, that's how I got to get my kidney doctor to reduce the cyclosporine. I told him about you.

[Jack]

So sorry! I've got confused and given you incorrect information. It was cyclosporin that I was taking and then switched to Mycophenolate and then another minor change to Myfortic. It was when I was taking the cylosporin that I was still having trouble.

I take 360mg of Myfortic twice per day which I understand to be half the standard dose, but it seems to work for me. The same medication seems to cover both transplant and Wegener's.

[Sangye]

I'm starting a new thread about Cellcept and Myfortic, etc....

[elephant]

Jack, I am so glad you are doing well with that. My dream is in a year or two that the only drug I will take is generic cellcept and prednisone ( low dose). I see my Wg specialist in June. So I look forward to that. Really I can call her about anything, it's just I rather wait until things get really bad or not better. I see my local Rhuemy next week and so I will have a long discussion about my progress. Sinuses and ears are not getting worse. Just not improving. So the prednisone 10 mg helped. Anyways thanks for the clarification.
Sangye thanks for the thread on Cellcept.

[Jeff]

Hi Sangye,
I have seen alot of your posts since I found this site, very good info.
I have a boy in college that was diagnosed with WG his senior year of high school. After 9 months of Metho and tapered pred kidneys showed some activity. The doctor then tried 2000mg cellcept and tapered pred again. Well, nine months later, more kidney activity again.
The doctor is now talking about Cytoxin. With everything I have read about it, it sounds scary.

I mentioned the rituximab to the doctor, and he told me it was too expensive. As a parent, you try to get the best help you can for your child. Should I press the issue to get this drug even if I have to take a loan out to get it? Or do the doctors consider it a last resort drug?

[Jack]

Hi Jeff,
It is easy to get scared about using Cytoxan when you read about the potential side effects, but there are many (the majority?) of people on here who have used it successfully. The dangers of using it increase with the total dose consumed, so a single episode of treatment (6 months?) should not be too much of an issue. I have had multiple sessions of using it and have now come to the point where the risks are too great to continue, but my doctors are well aware of this and would use something else if I should need it in future. Generally, they like their patients to survive the treatment.

[elephant]

Jeff does your son go to a Wegeners specialist? If so the Rheumatologist can write/call the insurance to get them to pay for the Rituxibam. My Rheumatologist mentioned that if I need something stronger that is what they would put me on RTX, not the cytoxan. Like Jack said the cytoxan can put people in remission if used properly.

[JanW]

Hi, Jeff -- my rheumo also told me that they could go to bat for me with the insurance company and get them to pay for rtx. I called the insurance company on my own (I was only diagnosed a month ago) and found out that I don't have to 'fail' on other medications to get rtx...the doctor just has to write a letter seeking precertification. Maybe this is the case with your insurer. You should call and see what the deal is -- you don't just have to take your docs word for it. I'm sure he deals with a lot of insurance companies and couldn't possibly know the ins and outs of each policy.

[Sangye]

Jeff, your son definitely needs a Wegs specialist. I know you've probably seen me say that a thousand times, huh? But with kidneys increasingly active it makes me wonder if they know what they're doing. Also for the doc to make a blanket statement like "it's too expensive" without checking your insurance, etc... seems odd.

I don't know if my prescription insurance (Medicare Part D plan) required me to fail on ctx, but I did--twice. Some do and some don't. They did require a pre-authorization with documentation from my Wegs doc. He said he'd get the drug for me, no matter what it took. Because of the recent study showing rtx to be as effective as ctx without its toxicity, I think insurers may have an increasingly difficult time denying rtx.

If it were me, I'd get a Wegs doc involved first. S/he will know what's best and how to get the needed drug. If they think rtx is best and your insurance won't pay for it, the drug manufacturer probably has an assistance plan. It can take 30 days to get such assistance, though, so please start asap.

I don't think paying out-of-pocket is a good idea. Your insurance could drop your son's coverage if you do a serious treatment like rtx without their approval. (Don't get me started) Also, rtx is typically repeated every 6-9 months, and it could become unmanageable. Rtx is unbelievably expensive. I heard it was ~$40,000, but I don't know if that was for one round (4 treatments) or for each IV.

[Lola]

My Rheumatologist prefers Rituxan over Cytoxan and wrote to the insurance company to request it. Denied. He appealed. Denied. I appealed, including all sorts of research material re: the effectiveness without toxicity in treating WG. I received my 3rd and "FINAL" denial. In the state of Washington, one can only appeal 3 times, then forever remain silent.
I cried when I discovered that the manufacturer has a patient access program for under insured and for those who have been denied by their ins. co. I qualified to get the drug free. That's $6,000/infusion. I had 2 infusions in Jan. 2010 and was careful to ask about the cost of infusing the drug - would it be covered? I was assured by the young insurance specialist that it would be no problem. Last night I received a notice from the insurance co. that the cost of the first infusion - roughly $10,000 - would not be covered because it was to infuse a drug which they consider investigative. I am devastated. Don't know what will happen. I do know that I will not saddle my husband with paying $40,000/year for the administration of a free drug. I cried a lot last night and know that I am just one of many with this kind of story. I also know that taking Cytoxan is not the end of the world. Most people on this forum are/did take it without ill effect. I'm just feeling mopey right now.