Tysabri for CIDP
February 3, 2008 at 5:13 pm
Though PP has kept me going for nearly 10 years, my neuro wants me to try Tysabri to see if any of my deterioration over the years can be reversed as he has seen in some MS patients he is treating in a Tasybri clinical study his practice is conducting through the Touch program.
I was approved to take the drug in November, but got “cold feet” and did not start it because of the PML (progressive multifocal leukoenecphalopathy) possibility. Biogen makes this drug for MS as well as Avonex for MS, which I tried without success, but also without side effects.
Are there any other CIDP’ers taking Trysabri, or have taken it? If so, did you see any results and what if any side effects came with the drug?
Thanks for any input on this.
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Tysabri for CIDP?
AnonymousJanuary 3, 2008 at 7:58 pm
I’m a newbie. A caregiver for my wife (Shannon) of 18 years who has suffered with CIDP/Mgus for the last 9 years. Her story is long and complicated, and for the moment we’ll leave it alone. As for the immediate future…Shannon (44 years old) is currently in a serious relapse. The suggestions on the table are 1) Cytoxan, for the 2nd course in the last 6 years or, 2) Tysabri-> a drug for MS. In researching and even calling the drug company I’ve yet to find any information about treating CIDP with Tysabri. Anyone out there who may have some information, or has been offered this “new” drug? Apparently those with surpressed immune systems can develop a rare and deadly brain infection (PML). Shannon’s immune system is seriously surpressed!! I’m not sure what the neurologist is thinking…but in allowing him the benefit of doubt, I’m out in internet space looking for information. That’s how I ran across this forum a few days ago.
Shannon’s regular regiment is * IGG every 2 weeks* Solumedrol every 2 weeks* 4,800 mg of Neurton a day* 3 duragesic, 250 mics/day patches a day*2000 mg Cellcept*50 mg Amitriotyline*60 MG Prednisone*40 MG Opana*Methotrexate for the last 30 days*Had a course of PE 3 weeks ago.
Pain is a huge issue for Shannon. As of late weakness in her hands and legs is becoming more apparent and concerning. She has been in and out of the hospital for the last 8 weeks. A recent lumbar puncture revealed high levels and protiens and some type of cell that isn’t supposed to be there. In any event the Dr. said its time to get very aggressive, hence the reccomendations of Cytoxan, or the trial of Tsabri. One more item. 7 years ago Shannon recieved Ritoxan(?). It didn’t work for her and had to go to Cytoxan which really worked well…but she barely survived while getting the drug.
Thank you in advance for your help/information.
Joe In AZ
AnonymousJanuary 3, 2008 at 8:44 pm
Wow, I don’t really have any answers for you and have often wondered about MS drugs for CIDP. I don’t truly understand why they aren’t used. On that note, why does he want to consider a drug that I believe was banned for a while? And were her side effects from Cytoxin something that could be helped now vs. when she last had it? Good luck and hopefully someone else will have some input for you.
AnonymousJanuary 3, 2008 at 9:06 pm
I know that some doctors have been looking at that drug. I listened to a talk Dr. Dalakas (the Foundations newest member to the advisory board) gave at the end of October, he said that no study has been done on the drug yet (for CIDP(, and there is no study being planned either, but apparently some doctors are considering if it could be used for CIDP as it stops migration or surpresses the transmigration (I’m trying to make sense of my notes :confused: ) He did not mention if he had expeirence with it, but, I stand to be corrected here, I think someone next to me said that they knew someone who had it. Let me see if i can get hold of the person I think it may be and see what they have to say.
AnonymousJanuary 4, 2008 at 11:28 am
Glad you found this forum. I am so sorry your wife is having such a tough time! Is the CIDP MGUS-related? If so, what type does she have? Does she see a hematologist regularly? I don’t know anything about the drug (Tysabri). but I sincerely hope that you will find something to help her VERY soon!! There are a lot of people on this site who may be able to give you some good information so keep checking!
Hugs from Iowa…
AnonymousJanuary 4, 2008 at 12:55 pm
Sorry to hear about what you wife has been through. I’d be interested in knowing more about her diagnosis. Was she diagnosed with IgM MGUS or one of the other proteins (IgG)? There are several of us who have this form of CIDP and are trying Rituxan, so your comments regarding her treatment are quite pertinent, albeit not good news if it is IgM without other complications.
I am relatively new here too, so many of the drug names which appear on the forum are new to me too.
I came across the following slide in a presentation on the internet. I don’t know if your wife’s doctor is following along a similar progressive path, but it may be useful as further information for you.
I sure hope that you and your wife can find the right treatment. I am really amazed to hear of all the things she is currently taking.
AnonymousJanuary 4, 2008 at 1:23 pm
Hi Joe in AZ:
I have followed Tysabri, and evidently most cases of PML have been in MS or Crohn’s patients who were also taking (or had been taking recently) another immunosuppresive agent. Usually an interferon like Avonex, or maybe even something like Cellcept.
Tysabri on its own I believe has not been associated with PML.
The MS drug that intrigues me is Novantrone. It is a strong chemo that has been very effective for secondary progressive MS. My case of CIDP is pretty progressive and consistent. Novantrone is also used to treat leukemia. It can be harsh, but I’m young and becoming more open to looking into stronger alternatives that could knock this disease down. I have never seen any data regarding Novantrone’s use for CIDP.
AnonymousJanuary 4, 2008 at 3:32 pm
I’m impressed with the responses. Thank you to all of you. Andrew, excellent flow chart. For the most part it resembles the treatments progressions fairly accurately. As for the MGUS, I’ll need to look into the file for more specific data on Shannon’s Dx as it pertains to the Mgus. We pretty much have accepted that its there but didn’t really focus on it much. When she was first dx with the MGUS she underwent extensive testing, bone marrow bipsey’s, scans, surgeries all in search of cancer. They suspected that she had either a Lymphoma or Myeloma(?). Never did. CIDP was dx months later. There is still some thinking that she may have an underlying issue but out of range of detection. Actually, when I was roaming around this forum earlier in the week I was beyond surprised when I read of several members describing their disease as CIDP with MGUS. We were kind of lead to believe that Shannon had 2, distinctively different, rare health issues.
I have “edited” my initail post, I had the Cellcept dosage wrong and had forgotten a newer drug she’s on, Methotrexate.
TYSABRI update as of this morning. Shannon is recieving her IGG/Solumedrol today. We had an opportunity to get an update on getting accepted into the One Touch program for the Tysabri. The Neurologist is optimistic and confident that the drug will be available to Shannon. He made application to the insurance company yesterday. The trick is to “wash out” the immunosurpressants in her system to a level deemed to be safe before the Tysabri is started. Sounds a bit tricky, but the theories and methods behind trying Tysabri seem logical enough to give it a shot. At least that’s Shannon’s thinking today. Its hard not to ask ourselves. “What if this works?” It could be huge for Shannon, and all of you out there. I’ll keep you updated. As it sits today, it may be 4-6 weeks to get the approvals and Shannon “washed out” before she begins the treatment.
AnonymousJanuary 4, 2008 at 4:34 pm
[QUOTE=Joe in AZ] Actually, when I was roaming around this forum earlier in the week I was beyond surprised when I read of several members describing their disease as CIDP with MGUS. We were kind of lead to believe that Shannon had 2, distinctively different, rare health issues. Joe[/QUOTE]
You can get a good description of what is what in a post by Norb in the Thread “CIDP – Rituxan Treatment?” It’s post #150. The way I understand it is that MGUS can be CIDP but not necessarily (if there is no neuropathy), whereas CIDP does not necessarily mean you have MGUS (can be other causes).
Shannon may have two different diseases which might explain why some medications are not working…like Rituxan, which perhaps reduced the MGUS, but left the neuropathy uncured because it may actually be caused by something else (other underlying cause of CIDP other than the MGUS).
AnonymousJanuary 4, 2008 at 5:54 pm
I don’t have any good answers to your post but picked up on your reference to the danger of PML for those of us with suppressed immune systems. I have suffered with Crohns for years and have been on 250 mg daily of Imuran for 7 years. Not only does this big dose result in some strange side effects (lots of little skin cancers for one) but just when I thought I might get approval for Rituxan, my neurologist brought up PML and scared me out of it. We sure are a lucky bunch, aren’t we? Morris
AnonymousJanuary 4, 2008 at 10:55 pm
Andrew–I like the “eh”. I’m from Minnesota and spent many summers fishing in Canada. We moved to AZ 6 years ago on advice from our Neurologist. Shannon has severe axon damage in her legs and hands. His thinking was that the desert climate offers a better day to day coping element. Also thanks for the tip on Norbs post. I’ll dig Shannon’s file out and get more data on the Mgus. But when I do read the Dr.’s notes they refer to Shannon’s dx as CIDP associated w/MGUS.
Morris–Are you aware that Tysabri is now being used for Crohns? From what I’ve been told, the success rate is exciting.
Iowagal-> Thanks for the hugs. Right back at ya!
I think I’m going to benefit from particiapting on this forum. For the moment I can’t get Shannon to the computer. She feels that she already spends too much time of her life dealing with her issues. In a sense I don’t blame her, so I’m happy to pick up the slack.
One more item:
The approval from Biogen/Elan came in–Tysabri is officially available to Shannon. Now we await the insurance companies reaction.
Thanks to you all.
AnonymousJanuary 5, 2008 at 11:07 am
I am probably one of the few on this forum to undergo the full cytoxan protocol; to the point where it permanently arrested my CIDP. After the first 5 loading doses, I then underwent monthly infusions of 1800 mg for the next 8 months. I had no problems tolerating the cytoxan, but was so sick anyways at that time, that I probably wouldn’t even have known. I did lose my hair, but had no nausea thanks to also getting solumedrol infusions first. If you want to know more just send me an email. But I was in a very severe condition before they resorted to chemo & IVIG & PP had done virtually nothing for me. Solumedrol weekly kept me out of a nursing home…
AnonymousJanuary 6, 2008 at 9:14 am
I just finished 6 courses of cytoxan, along with Adriamycine and avastin. It was a miracle for me. I went from walking with a walker to now using nothing around the house. I suffer from relasping CIDP since May 2006. I was also diagnosed with breast cancer which is why I got so many chemo drugs. I was on methotrexate for 5 months prior to my other chemo and it was a very slow improvement. I had gone from a wheelchair to the walker in that time. It was not an easy course but I would do it again if offered. I hope your wife can find improvement with the new treatment and the side effects are not as severe. Keep us posted with updates. Thoughts and prayers,
January 8, 2008 at 11:53 am
Hello everyone. I’ve been off the site for some time now, but have been reading recent postings about Trsybri and Cytoxin. I have been accepted into the one touch program and was approved by my insurance company to try Tysabri, but after extensive research about the potential PML side effect, I’ve postponed this treatment until I see my neuro in March. It is made by the same company that makes Avonex, also an MS drug. I used this for nearly a year with no results so we stopped it. Cytoxin was also used for 11 months with no positive results, which seems to comfirm that we all react differently to diffrent treatment protocals.
I’ve had relapsing CIDP since 1986, and we’ve tried about everything out there. Tysabri is on the table now because it has been showing very positive results in several MS studies. My neuro runs one of the one touch programs, so I have made an list of additional questions I need to have answered before I go ahead with the treatment. He has stopped my Cellcept in preparation for Tysabri as patients with compromised immune systems or who are taking immuo suppressants are at higher risk for PML.
If any on you who may be considering Tysabri have any questions that your physicial has not been able to answer, I will be happy to add them to my list.
It’s good to be back on the site. My best to all.
AnonymousJanuary 9, 2008 at 11:13 pm
[B][I]Andrew[/I][/B]–it took me a couple of days but I dug up Shannon’s older medical files when she was dx’d with the CIDP associated with MGUS [B][I][U]IGG kappa [/U][/I][/B]and not what you have, IGM.
[B][I]Gavol.[/I][/B] We also did extensive research into Tysabri and the PML infection. Those who did develop PML were receiving the Tysabri and Avonex together. When Tysabri was re-introduced the Avonex component had been removed. No PML infections since… a good thing. It appears Shannon will begin the Tysabri within 3 weeks. We’re hopeful as she’s currently in a severe relapse. She did the Cytoxan 6 years ago, it worked, but nearly killed her. She was in a wheel chair back then and 5 months after the 8 month course of Cytoxan, she was walking. Great drug, but prefer to not have to see her go through that again.
January 13, 2008 at 1:48 pm
Thanks for the info. Hope Shannon does well and sees benefit from Tysabri. Please keep us posted on her progress. Good luck.
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