rituxin for people WITHOUT the anti-mag type neuropathy
May 9, 2012 at 8:19 pm
Most of the rituxin posts i have read have been from members with the anti mag type neuropathy. Are there people on here who have had success with rituxin who do not have this?
I am suppose to be starting it as soon as I finish the head to toe cancer check, upper gi, lower gi,pelvis ultrasound etc…….uggg— time consuming!! Would really like to read about others experience with it if you are on here —PLEASE!!
May 10, 2012 at 1:33 am
I imagine it would be even more productive for you, as the anti mag is much more difficult to treat than regular cidp. Now that you mention it, I don’t remember anyone w/out anti mag posting. However, I do think I remember it being part of the protocol for the stem cell recipients along with the cytoxan. Do cytoxan and rituxan have the same risks? If so, did your doc ever mention cytoxan? There are members on the site that have been in remmission after the cytoxan treatment. Pam H and Ryan (blue eyes member name I think). Just thinking out loud. I wonder about cytoxan for us once puberty is over and if we still have this. It would be nice to be done and over with this. At his age, the risk of cancer from treatments (chemo drugs), even from cat scans is higher than that of an older person.
AnonymousMay 10, 2012 at 10:38 am
I don’t know of anyone personally, but there is a small study they did in Italy a couple of years ago on this topic. They took 13 people who tested negative for Anti-MAG neuropathy and had partial/complete refractory CIDP (eg. no other treatment really worked).
Of those 13 people, 9 of them responded within 1-6 months after receiving Rituximab. I’ve read the full article, but only the abstract is available free online: http://jnnp.bmj.com/content/82/3/306.abstract
I know that’s not really what you were looking for, but at least it can give you some hope!
May 10, 2012 at 2:07 pm
sanjay–i will look into that study ….thanks 🙂
Dawn–the whole cancer risk is why my Dr is being so cautious and making me go through the upper gi, lower gi, pelvic biopsy, etc. Partially due to my age-48, and because my neuropathy COULD be parneoplastic due to the vgkc antibody. Its strange, that it is definitely immune related—and possibly paraneoplastic. This means that the immune system is possibly reacting to an underlying cancer that has not been detected yet. The ultimate solution, if this is the case would be to find the underlying tumor and treat that.—but since being unable to find any tumor, not sure exactly what to treat the immune system with. Sometimes, the immune system can suppress the tumor and the result is the nerves suffer–ie neuropathy. Anyway the choice was rituxin due to the least long term effects on other organs. It only takes out your b cells leaving the t cells—which means less chance of catching things while on it. Will need to be careful of fungal and bacterial infections though.
I have been told rituxin has fewer side effects and risks than most immunosuppressants. I did see earlier posts,I believe the name was tously hyde—and i think it was a child receiving rituxin? maybe he/she will respond if still on, and give you some info on rituxin and children. that is a good point on the puberty, that would be great if Kevin’s immune system straightened itself out then 🙂
Rituxin is being used with great success for rhemotoid arthritus, The nurses in the infusion room where i go have seen success with it for that. My dr has two other patients on it, one who was in a wheelchair and is now walking with a cane, and another who is just in the process of starting it. They are both a lot more dehabilitated and older than I am, I do feel she is being over the top cautious in my case–and im sure it’s because of the antibody that could possibly be cancer related.
I asked about immuran and cytoxin, but she said she would rather my try the rituxin. I trust her opinion, even after going all the way out to minnesota and spending a week with the legendary Dr Dyck, I still trust her opinion over his.
If i ever get started on it I will post and let you know how it works and side effects so you will know for Kevin. I will get 1000 mg 2x. 10000mg wait two weeks then another 1000mg. then nothing for 6 to 9 months. she said if it works it will take 3 rounds like this. That part i like. Plus she said i should know right away if it’s going to work. It’s not one of these you need to take for nine months only to find out it’s not going to work. These were the things i was hopng i would get others who have tried it to post about.
Im glad you are still on here posting— we have lost so many people since the board changed. would be nice to see it up and running like it was prior to the changes. Take care Lori
May 10, 2012 at 2:51 pm
Thanks for all of the info! Just thinking out loud again, regarding the cancer, has your thymus gland been checked? People with mystanis gravis get a thymemectomy and recover????? I have always thought there is a relationship between cidp/MG and the thymemectomy?? Regarding the puberty thing for us, it is the thymus gland that plays a role in the “cure” Apparently at puberty and at birth, the thymus gland is the largest, producing the most t-cell receptors. That is what offers the chance to reboot (for lask of a better word) the immune system. So obviously the thymus gland with its job of t-cell receptor production is more imperative and crucial to these diseases than the medical community acknowledges. I think there should be more focus on it. There has to be a connection.?
May 10, 2012 at 6:01 pm
yes—you and i had many thymus discussions on the old forum—I had them saved in my messages in the old forum to refer back to 🙂 I have a nodule on my thymus which turned out to be benign. It was also discovered that my thymus was larger than most thymus glands of people my age—the thymus should shrink with age as it is most important during childhood. I saw a specialist and it was determined that my thymus was fine, just didnt shrink as much as most do. BUT….i can’t help but wonder about the whole thymus thing STILL???
when I asked about the T cell B cell thing regarding rituxin—-because rituxin kills b cells, what if my nerve damage is from T cells? i was told that they work together ( t and b cells) think of it as your hands, if you cut one off and went to clap it would not work well? strange analagy i know—just sharing what i was told—does it make sense to you?
regarding the sct, i was following a recent blog and it did mention that she got rituxin prior to cytoxin.
The one thing that makes me nervous regarding the rituxin (or any immunosuppressant) is that whole npl brain thing that is fatal and irreversible. It is the black box warning on most of the immunosuppressants. It seems the more immunosuppression yone has had had increases the odds. I had the jc antibody test done, awaiting results.
hopefully puberty will alter Kevins immune system and you won’t have to deal with the whole immunosuppression thing. It’s bad enough making these decisions for yourself as an adult—it would be very difficult to make them for your child.
How is Kevin’s mobility now ? How old is he? Well it’s been a while since i researched the thymus gland—lol– and i have the day off from work, so i am going to google—maybe you and i will uncover some great thymus mysteries and be rich and famous one day!!
AnonymousMay 12, 2012 at 3:24 am
I have CIDP – “atypical” and very, very painful nerve pain in hands and feet/shooting up to my legs. Low positivie GAD 65/SPS positive. Apparently this combo plus persistant low white blood count and other varients in my blood work, including a recent “spike” in something (can’t remember, but it did show a bone marrow something or other; I haven’t yet had the blood test that show the cancer levels – the one they use for prostrate cancer). From what i understand, all these put me at high risk for cancer. Unfortunately, I have only had insurance approvals for CAT scans and chest X rays (not a PET scan, which is the golden standard to find a tumor). Have not yet found a tumor. From what I have read in the various research and forum entranies, it can take anywhere from 18 months to 26 months (and a most recent report I read said 5 years post CIDP diagnosis) to find the tumor. I have just gotten my scooter, have resigned myself to a life of extreme pain, while hanging on to the beauty in my life. However, each day for the past 1 1/2 years, lying in bed crying from such agonizing pain, I have prayed for the doctors to find a tumor. But that old addage- be careful what you wish for – in the last 6 weeks I have buried 2 neighbors, both exersize workhorses, whose fitness and health habits could put them on the cover of any fitness magazine. Non-smokers, both died from small cell lung cancer. Go figure. I am ready to give up the salads and head right to dessert – anyone care to join me? Cancer may end the nightmare of pain, spasms and falls. But it might not be that insant cure we all hope for.
May 12, 2012 at 10:37 pm
PattyO–sorry to hear of your pain. I am fortunate to not have any pain, as i understand nerve pain can be unbearable. I did have a PET scan last june at mayo, no tumors were detected then. I feel as though my cidp is not being treated aggressively due to the possibility of an underlying cancer—but my point is right now it’s not cancer i’m concerned about it’s the damn cidp. Yes i have read that the cidp can prelude the cancer by up to 5 years–but I’ve also read there may never even be a cancer, just the antibody. It’s so confusing, i wish there was more medical knowledge on this whole thing. I am way more concerned with the quality not quantity of my life. i would much rather have 5 good years with full use of my legs than 20 without them. Oh well iI have come this far, just a few more tests and i SHOULD be able to start the rituxin—-im hoping by the end of May, seems like it’s taking forever to get going.
Have you been checked for the small cell lung cancer. there are many antibodies that signify the possibility of different cancers. some antibodies mean there will definitely be a cancer, some mean there might possibly be one in the future—this is what mine is (VGKC) do you have a particular antibody specified? the good thing is the antibody DOES show that the nerve damage is coming from the immune system, so at least with it one knows it’s immune related, If thats’ any consolation.
yes i do see what you mean about hoping for a tumor–because removal and treatment of it will stop the immune process and possibly the nerves could then start to regenerate and heal—–so the hope would be to find a cureable tumor!!.
Challenge your insurance company and use the appeal process–i did this to get my pet scan covered. i went to the second level appeal and it got covered. my insurance is anthem bcbs. if your interested and want more info on it let me know. once again sorry for your pain–i hope things get better for you . Lori
May 13, 2012 at 11:03 pm
Kev is 15 now. Doing awesome. Working out, tons of definition and runs 4 miles pretty fast every day that it is nice. Still runs around playing airsoft and carries 40lbs of gear while running in the forest. Still plagued by migraines and still very sick every two weeks after treatment w/the aseptic meningitis. Wondering about sub q for college. On first day of freshman year (p months ago) he and his brother were in a bad accident. His older brothers brand new mustang was totaled 2 blocks from home. Lady went through a stop sign. Both kids hurt, butned from airbags, whiplash , as well, Kev’s port was affected. The impactof the airbag popped some of the sutures that hold it in place. First access after accident did not happen, had to go to hospital and the port was essentially crimping the catheter. We did that itp or tpa or what ever it is and the nurse drew a clot out. Anyway, we will have to get a new one soon, that is why I am wondering about sub q. Have to get wisdom teeth out and 2 other teeth as well, so I am a little nervous about these surgeries.
Still missing about 30 days of school a year, but has kept up beautifully, al A’s and B’s, I think GPA is 3.8 or something. I think we are going to ask totry to wean off of the ivig againand see what happens. If only God will help Kevie. He has been such a good kid through all of this. No whinning, complaining, taking advantage of the situation or anything. He truly is a gift from God. Things could have gone so differently. I am blessed.
Ih well, maybe one day we can figure something out with this thymus thing!! No one ever listens to me, well except the Chiropractor???
Happy Mothers Day!
May 14, 2012 at 1:20 am
sounds like he is doing great Dawn 🙂 that must have been scary with the accident, port and all. there are a few members who have had success with the sub Q, seems like it would make a difference on how much you are having to inject?? My daughter had all of her wisdom teeth out with absolutely no problem. was eating normally and hanging out with her friends 3 hours after–never even had to take any of the pain meds prescribed for her. hopefully kevind will go that smoothly too—-with all he has been through with the cidp, the wisdom teeth will probably seem like nothing to him…. happy mothers day to you too 🙂 Lori
AnonymousMay 15, 2012 at 1:13 am
Thanks to Lori, Dawn and all the moms on this forum. Women are strong, courageous and did I say strong? Dawn: I am so sorry that your son has to deal with this horror. Each day I roll out of bed and tell myself I can do this – I can do this because I would ask for this everyday rather than have one of my boys suffer like I do. Your Kevin sounds like he has been loved and supported; what great lessons you are teaching him, lessons that will last his lifetime and those of his childrens’.
Lori: thanks for the support/push to challenge my insurance co; I will definately take a big breath and go for it. Right now I am trying to schedule plasmapharesis. Hoping that process will restart my immune system.
Dawn: cheers to your bravery and courage as you cheer your son on through the many challenges he faces. In his short life he has experienced so much – and handled school, socializing, and even outtings with his brother so well.
*Check out the sub q trial being held by Hizeria (drug manufacturer) and the Weill Cornell Medical center in NYC. From everything I have read, the headaches are minimized through this new delivery system. Not sure if they wil allow a young adult to do it; certainly worth a phone call.
Thanks again, ladies
May 15, 2012 at 1:17 pm
Thanks for the kind words and belated Happy Mothers day to you too!! You too are strong!!
Do you know is the trial only at Cornell or do they work with your own doctor?
Kev has come a long way. From being unable to walk and all organs affectedto what he is now. God must have a plan for him. He is so strong, positive and kind. It is unimagineable to me how he has remained so positive and kind through this. He never shows any anger or resentment. I have always tried to explain to him that this experience makes him so much stronger in other ways, not fully expecting a child to grasp the thought. I always tell him how much I learn from him how to be a better person. God really did break the mold when he made Kevie!
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