help getting BCBS approvial for Rituxan treatment of CIDP

This topic contains 16 replies, has 7 voices, and was last updated by  cer100 2 months, 3 weeks ago.

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  • #105040

    Anonymous

    I have had CIDP since 2000. I started on IVIG and did great for about 3 years. I then did plasma exchange for 6 months which helped the IVIG start working again. Then slowly over time, IVIG stopped working so I was put on steriods. That was the worst tratment but it did get the IVIG to work again. I found Rituxan treatment on this site and asked my Dr. to try it. I have been taking Rituxan off and on since 2005. It has been the best treatment for me. No side effects, tolerate it well, and keeps me stable with out the ups and downs. It never seemed to loose it’s effectiveness.
    My insurance change from UHC to BCBS and they continued to approve the Rituxan for a year. I had to go off for some oral surgery and when I asked for approvel to start again, BCBS said they could not approve Rituxan because it was expermintal for CIDP. When I asked why they had approved it before, I was told that it was just a continuation of care for 1 year and they couldn’t give it to me. They said I needed to take IVIG.
    I have now taken 2 (5 Day) sets of IVIG and have asceptic mengites headach to the point I cant lift my head for 3 days. I wind up in the emergency room, throwing up and in such pain. I get a rash on my face and neck that last for a month or more. I just can’t take the IVIG again.
    But BCBS won’t approve the Rituxan.
    IS THERE ANYONE OUT THERE THAT CAN GIVE ME POINTERS ON WHO to talke to, HOW to get an approval, OR WHAT to do to get approval from BCBS?????
    Please post your stories or suggestions to get an approval. I am going down hill and it’s just me. I live alone and try to work full time to support myself. I really could use the help.
    Thanks,
    JoMama

    #105066

    Anonymous

    I would suggest you contact the manufacturer of the drug. They may let you have it for free. It wouldn’t hurt to try. I would search them on the net and see if you can find a contact number. They would probably ask for a doctor request.

    #105071

    It was not long ago that ivig was off label for cidp, actually when we started it was. Anyway, if your doc is diligent and writes to bcbs, they usually eventually approve. He would have to include your adverse reactions to ivig as documentation as to why you need the rituxin. As well, if there is documentation to show progress while on the rituxin have him include that. I am sure you know all of those things already. If all else fails, maybe your doc would consider sub Q ivig. Search the archives for a member named Julie. She had awful experiences w/ivig and switched to sub q. As well, a member named Starli had good results. Are you able to see immediate results with the rituxin? Typically when people start on it they have to be on it for a while before it works. If that is so for you too, maybe if they do approve it, you can ask to switch brands of ivig. We did not do well at all on nu factor or this other one that is no longer on the market. Gammunex was a little better, but gammaguard seems to work best for us. Granted we still get the aseptic reaction the next day and throw up w/flu like symptoms, but the worst is over in a day compared to a week with other brands.

    Another consideration could be to use solumedrol (steroid) in conjunction with the ivig. There was a member named Gabrielle I think that would also get very sick w/ivig but when solumedrol was added she was able to tolerate it.

    Good luck to you, we will say a prayer for you.

    #105081

    Anonymous

    Thanks for the reply. I did contact the manufacturer. My Dr and I sent information to them and they are going to see what can be done. I did feel they were very helpful.
    I might have to try the sub q. ivig the only problem is does the sub q and the regular IVIG produce the same effects. I found that in addition to the reactions, I was not getting any help from the IVIG.
    When I first start on the Rituxan, it does take a bit of time to start working best. I think it is usuall around 6 weeks to get the full effect. I just find that when I’m on a regular dose, I can maintain a rather healthy lifestile. I like to garden, hike and photography. Right now I have to pace myself so I can go to work as well.
    Thanks again for all the help and prayers. can always use these in abundance,
    JoMama

    #105155

    GAVol
    Participant

    If you don’t get approval for Rituxan, have you tried IV solumedrol with plasma exchange? After about 2 years I had to stop IVIG due to cardiac side effects and went back on PE with 1000 mg IV solumedrol at the end of the exchange and it seems to be hold me steady. For me, IV prednisone does not have the same side effects a long term oral treatment did. We all respond differently to the various treatments, but it is another possibility for you to consider. Good luck

    #105723

    Lori222
    Member

    Jomama did you get your rituxin approval? I think using the fact that it worked for you in the past, it is less expensive than ivig, and less infusions than ivig should all be very good points to file an appeal if necessary. Plus you could throw in the fact that you are able to work full time with rituxin use and fear disability if denied.
    When on rituxin were you on the 1000mg 2x every 6 months? i recently started it two weeks ago—can’t wait to see if it’s going to work. I saw your comment about it taking 6 weeks for you. How significant was your improvement in those 6 weeks? Lori

    #105727

    Anonymous

    Hi Lori,
    I’m soooooo happy to report that BCBS did finally approve the Rituxan for me. I and my Dr think that it was because we could show that I did try the IVIG and had bad reactions to it and like my Dr said, ” they have to offer you something”.
    I’m at 700 mg per IV, once a week for the first four weeks, then I will wait 4 weeks and then have another IV. After that it will space out to every 6 weeks.
    I was worried that after such a fight to get the Rituxan, that it would not work as well as the first time. But I have had a lot more energy and strength. I still get the burning feet in the evening if I go for a long walk with the dog. I would say that I am back 50 % now and hope to climb much higher as the meds start to work. It might take a litter longer this time because of the condition I was in to start with. I hope you have success with Rituxan. CIDP can be quite a burden sometime but it helps when you know something will work to make it better.
    Let me know how your doing,
    JoMama

    #105733

    Lori222
    Member

    JoMama—glad you finally got approval for the rituxin. That’a a lot different schedule of ivig then my dr has planned. I think i will share your schedule with her, just to see what she says. mine is 1000mg 2 times 2 weeks apart, then repeat in 6 MONTHS, then again in another 6 months. Does your dr think that you will be on it forever or just for a certain period of time? So how long after you started back on your infusions to get back 50% ? If you dont mind my asking—what was your physical condition before the rituxin as to after? sorry for so many questions, there’s just not a real lot out there about what to expect and how soon for rituxin.
    i got my second infusion today, then according to my drs current plan I wont go again for 6 months. Can’t wait to see if i gain strength in my feet/ legs—-my dog’s getting FAT!!!! LOL Lori

    #105735

    Anonymous

    Hi Lori,
    No probem asking all the questions. I found out about Rituxan on this site and sometimes its the best place to find answers.
    I will give you some background on my use of Rituxan. I found it as an option in 2005. I asked my Dr. about it and he had never heard of it. I did some more reserch and presented it to him and he thought it as a good option to try. I had gone through most other treatments which worked for a while and then stop.
    Treatment with Rituxan in 2005 was to have it for two years and then go off. I did that for two years and then my Dr. did not know about treatment longer than that. So I went off and with in one year I was back to the symptoms that I had had before. I tried the IVIG and didn’t get much help. I then turned to this website again and found someone that had Rituxan for longer than two years. I found that they were located only 60 miles away. I aske who was their Dr. and go an appointment with them. The Dr was supprized to find out how I had found him, but he said that with the drive I had to get better, he thought he’s treatment with Rituxan would help.
    I started the Rituxan again and was on it until I had the dental work and had to pause treatment. So now I start again.
    My physical condition was not as bad as some I have heard of. I have painful feet and hands. Lots of burning in them. I was week to the point of not doing much besides sitting. I love to garden and could hardly plant the seeds. it was all I could do to walk the dog 100 yards. Never had to use a walker but my balance is very bad.
    So now after 3 IV’s and 3 weeks, I am able to hoe weeds, walk the dog around the block, build garden benches, have friends over for dinner, make cakes for my friends wedding, and shop most of the day with a girlfriend (power shopping). I know that I seem to have more energy that most people. I just like to do the things I like when I can. When I can’t, I stop. My Dr said to keep moving and says that it is my physical activity that keeps me from getting to bad.
    My Dr wanted to start again on the Rituxan with a max dose and then go to the maintance dose of every 6 weeks. I will stay on Rituxan indefinatlly. My Dr says that I should be able to extent the time between treatments longer and longer as time goes on. I should be able to streach it out for 6 Months eventually. It will be my symptons that will dictate the treatments.
    Good luck, and hold out. I think Rituxan works the best for me but it is the slowest to take effect.
    JoMama

    #105739

    Lori222
    Member

    thank you JoMama for the info. Your story is similar to mine. I have done the ivig and plasma x/c both worked but minimaly, didnt hold me for long. I am able to walk unaided ,but slower, and very bad balance. My hands and arms are fine, not affected by the cidp at this point. I still work full time as well–which is good since thats how i maintain my insurance. I was diagnosed and started on ivig in june of 2009 (3 years ago)
    I have had two 1000mg infusions of the rituxin in the past two weeks—-i hope it works as well as yours did. If it does work for me I will mention to my Dr of how your dr goes by the cidp symptoms and not the 6 month regimen. I didnt question that when we originally talked because i just thought maybe there was some manufacturers reason why rituxin could only be done every 6 months. From what i have read it seems to be because it is believed the b cells take 6 months to replenish.
    Do you just have regular cidp ? Most of the people here on the board who have used rituxin have a different type—anti-mag.
    Mine is considered “atypical” cidp but not anti-mag. Normally I don’t have pain, but have noticed some different sensations since the rituxin infusions. Did you get an increase in pain or sensations with the rituxin? Lori

    #105760

    Anonymous

    Hi Lori, I don’t have the the anti-mag kind of CIDP. I know that it was thought the anti-mag was the only kind of CIDP that would be helped with the Rituxan.
    I talked to my nurse on Friday when I got Rituxan last and she said that your doseage is what that is the normal for RA. The Dr. here have been treating CIDP very well with Rituxan.
    Let me know how it does for you.
    JoMama

    #105761

    Lori222
    Member

    thank you JoMama for all of your great info. i will let you know how it works for me. I am glad you were able to get back on the rituxin. You mentioned above that you had to stop the rituxin to have dental work—are we not able to have dental work while on it, my dr never mentioned that to me? Someone else on the board in an older post mentioned that her childs dr mentioned something about not playing in the dirt while on rituxin, i have been gardening while on it and you mentioned you had been too? Do you take anything else with the rituxin, i noticed some still do ivig while doing rituxin? I am taking only the rituxin. Do you mind sharing who your dr is? I think i am only the 3rd person my dr has on this for the cidp. Maybe i could give her your drs name if he/she has a lot more experience with it. My dr is Srinivassan at the lahey in burlington MA.
    once again thanks for the great info—i hope you continue to improve to 100% 🙂 Lori

    #105766

    Anonymous

    Hi Lori, The dental work that I had was wisdom teath pulled and an implant put in, so… it was not just a dental check up or cleaning. I do work in the garden. The thing you want to watch out for is people who are sick and avoid close contact. Just wash your up good after garden work and I think you should be fine.
    I don’t take anyting but Rituxan. I go to Prespretirian Hospital infusion center in Albuquerque NM. There are several Dr there that all work together.
    Good luck,
    JoMama

    #113696

    PLUCK
    Participant

    Hello anonymous and Lori,
    I was diagnosed in 2001 and have run the gamut of all CIDP treatment. I am trying to get approved by BCBS for rituxan . Please let me know what states you both live in so that I may better understand the way BCBS works in different states. Also, this provides evidence that they have in fact approved Rituxan for CIDP somewhere in the United States. Thank you very much, pluck

    #113697

    PLUCK
    Participant

    Hello anonymous and Lori,
    I was diagnosed in 2001 and have run the gamut of all CIDP treatment. I am trying to get approved by BCBS for rituxan . Please let me know what states you both live in so that I may better understand the way BCBS works in different states. Also, this provides evidence that they have in fact approved Rituxan for CIDP somewhere in the United States. Thank you very much, pluck

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