Rituximab - Possible New CIDP Treatment Option

General General CIDP Discussion
1

I wanted to share with the group that my doctor (a neurologist at a prominent Boston teaching hospital) recently spoke with me about Rituximab as therapy that could obviate my need for IVIG for a 1-2 years. It does not appear to be a permanent solution, but research reports that I have read are encouraging. For example...

http://peer.ccsd.cnrs.fr/docs/00/56/63/32/PDF/PEER_stage2_10.1136%252Fjnnp.2009.188912.pdf and: http://nextstepresearch.org/blog/category/cidp-treatment/

The studies suggest that Rituximab may be beneficial for some types of CIDP. Has anyone tried it?

2

I will be starting Rituxan next week. It is infused weekly for 4 weeks and if successful should reduce the interval of IVIG treatments. My doctor stated it would be repeated every 6-9 months. Major drawback is depressed immune system-double if on IVIG also. Let you know how it goes later.

3

I have had two coourses of rituximab at charing cross hospital london - both times gave me several months of much improved mobility

4

Hi Evan,

I've had several conversations about rituximab with my immunologist, who heads the allergy and immunology department at a medical school in NYC. About six years ago, rituximab was being considered as a possible treatment for my blood clotting disorder, immune thrombocytopenia purpura (ITP), which wasn't responding to the IVIG that I was taking. I also consulted with a hematologist about my ITP. While the hematologist didn't express reservations about using rituximab, my immunologist was concerned about the risks involved. Rituximab has many potentially serious side effects compared to IVIG, which which you seem to tolerate well. Rituximab weakens the immune system, while IVIG strengthens the immune system. The benefits of rituximab need to be weighed against the possible adverse effects. It might also be wise to consult with an immunologist, who might have a different point of view than a neurologist.

Also, I'm not sure that taking rituximab would eliminate the need to continue with IVIG. Many people who take rituximab also take IVIG to strengthen the immune system. I don't know if Bob continued taking IVIG after rituximab treatment or whether Mashrub is likely to do so.

Jon

5

Interestingly, my neurologist just broached the subject of this treatment with me last week, and is having research it on my own. Look forward to hearing others' results with it.

6

Hi Sam,

I'm not sure how familiar you are with searching for medical information on the Internet. A good source of information is PubMed (http://www.ncbi.nlm.nih.gov/pubmed/). If you enter "CIDP" and "rituximab" in the search engine on this page, you will get more than 30 hits. One that looks interesting is:

Rituximab in patients with chronic inflammatory demyelinating polyradiculoneuropathy: a report of 13 cases and review of the literature. </pubmed/20639381>

Benedetti L, Briani C, Franciotta D, Fazio R, Paolasso I, Comi C, Luigetti M, Sabatelli M, Giannini F, Mancardi GL, Schenone A, Nobile-Orazio E, Cocito D.

J Neurol Neurosurg Psychiatry. 2011 Mar;82(3):306-8. Epub 2010 Jul 16. Review.

You can read the abstract of this publication on PubMed. It appears that you have to purchase the full paper from the Journal.

Jon

7

Thanks, Jon. Just getting into researching different treatment options; read both links above, so I'm going to my neurologist to request this treatment. I've had a bit of backsliding in my CIDP; loss of mobility in my legs and feet, as well as a lot of pain. Would really like to get this under control. Thanks for the info!

JonJ said:

Hi Sam,

I'm not sure how familiar you are with searching for medical information on the Internet. A good source of information is PubMed (http://www.ncbi.nlm.nih.gov/pubmed/). If you enter "CIDP" and "rituximab" in the search engine on this page, you will get more than 30 hits. One that looks interesting is:

Rituximab in patients with chronic inflammatory demyelinating polyradiculoneuropathy: a report of 13 cases and review of the literature. </pubmed/20639381>

Benedetti L, Briani C, Franciotta D, Fazio R, Paolasso I, Comi C, Luigetti M, Sabatelli M, Giannini F, Mancardi GL, Schenone A, Nobile-Orazio E, Cocito D.

J Neurol Neurosurg Psychiatry. 2011 Mar;82(3):306-8. Epub 2010 Jul 16. Review.

You can read the abstract of this publication on PubMed. It appears that you have to purchase the full paper from the Journal.

Jon

8

Hello. We are in the process of trying to get Rituxan approved for my dad. My dad who will be joining this list shortly is 72 and has mobility issues with his legs and uses a walker. His story is lenghty but the bottom line is that he is not getting better with IVIG and feels that he is getting weaker. As I am sure most of you know, Rituxan is not approved by the FDA for CIDP so Medicare denied it (as well as the supplement) outright. Because dad has "Failed" (hate that word) IVIG and Plasmaperesis his doctor is writing an appeal. He has never tried Cytoxan or Methotrexate but we had read that Rituxan works a bit differently than they do and could provide a more long term positive effect. Would love to hear any experiences about Rituxan and how you got it approved. Here is a brief background on dad (will be joining the list at JT41)

In major auto accident Aug. 2009 with major trauma to the left leg. Hospitalized and leg in cast for 3 months, major loss of circulation. Fast forward to next August still very weak but without walker when lungs suddenly start turning into fiber and is dx with Idiopathic Pulmonary Fibrosis. Told by 4 docs no treatment, no cure and was NOT autoimmune. with very little lung capacity went to National Jewish Hospital in Denver and was told it WAS autoimmune likely Polymyositis and or a Paraneoplastic Syndrome due to cancerous node (that all the other hospitals had missed). Went to MD Anderson to address cancer first. Started Proton Radiation to node near lung which worked beautifully. After Radiation was complete began Cell Cept for Autoimmune. Lungs are better 90% but leg weakness worse. Began IVIG which seemed to help at first but now is not helping. Tried Prednisone along the way along with PlasmaPheresis. Major complaint is the inability to walk without walking and losing strength in arms now as well. Feel blesssed that Lungs are better and continue with Cell Cept. I want my dad to completely eliminate all process foods and go on a Paleo Diet. Veggies, Fruit, Nuts, Meat only but although dad eats very healthy he still does have some rice, bread, chips, etc. I just feel like it can't hurt him to try this. We welcome all input. Thanks.

9

I was given Rituxan 4 times last January-February. Although, I tolerated it well, but it did not change my need for IVIG. There are a few patients on FB that have Rituxan treatments and it has worked great for them. I had BCBS and they approved it right away. I have tried many therapies so that may have been the reason. I would think if your father is failing other therapies that the appeal should work. It is not a cure but can really reduce the need for frequent IVIG. Has he tried Cellcept or Imuran? They may be options if he is turned down for Rituxan. Mary B

10

... I posted this over 12 months ago, still walking and can now write legibly again ... hope it lasts .... Bob

bob_kinley said:

I have had two coourses of rituximab at charing cross hospital london - both times gave me several months of much improved mobility
11

Thanks very much Bob. What was it like going through the Rituximab treatment? Did you experience many side effects? and do you continue to get IVIG

12

easy. … 1 day per week for 4 weeks, no headache no photophobia. … took 2 or three months to kick in … my only medication now is pregabalin as I still get bad pins and needles. … the downside is that according to my neuro it doesnt work for all cidp patients … good luck :0)

13

Check this out first, Gary;

Rituxan can cause serious side effects that can lead to death, including:

  • Infusion reactions. Infusion reactions are the most common side effect of Rituxan treatment. Serious infusion reactions can happen during your infusion or within 24 hours after your infusion
  • Progressive multifocal leukoencephalopathy (PML)
    • PML is a rare brain infection
    • PML usually causes death or severe disability
    • Call your doctor right away if you notice any new or worsening medical problems, such as a new or sudden change in thinking, walking, strength, vision, or other problems that have lasted over several days
    • PML usually happens in patients with weakened immune systems
    • PML can occur during treatment with Rituxan or after treatment has finished. There is no known treatment, prevention, or cure for PML
  • Tumor Lysis Syndrome (TLS). TLS is caused by the fast breakdown of certain types of cancer cells. Patients receiving Rituxan for non-Hodgkin’s lymphoma (NHL) may get TLS
  • Severe skin and mouth reactions. Tell your doctor or get medical treatment right away if you get any of these symptoms: painful sores on your skin or in your mouth, ulcers, blisters, or peeling skin while receiving or after receiving Rituxan

Rituxan can cause other serious and life threatening side effects, including:

  • Hepatitis B virus reactivation. Tell your doctor if you have had hepatitis B virus or are a carrier of hepatitis B virus. Receiving Rituxan could cause the hepatitis B virus to become an active infection again. Hepatitis B reactivation may cause serious liver problems and death. People with active liver disease due to hepatitis B should stop receiving Rituxan. Your doctor should monitor you for hepatitis B infection during and for several months after you stop receiving Rituxan.
  • Infections. Rituxan can increase your chances of getting infections. Rituxan can lower the ability of your immune system to fight infections. Call your doctor right away if you have any symptoms of infection including fever, cold and flu symptoms, ear and headache, pain during urination, white patches in the mouth or throat and cuts, scrapes or incisions that are red, warm, swollen or painful. These symptoms may be signs of a serious infection. Before treatment with Rituxan, patients should tell their doctor if they have an infection, including one that will not go away or keeps coming back.
  • Heart problems. Tell your doctor about any heart problems you have, including chest pain (angina) and irregular heart beats. Rituxan can cause chest pain and irregular heartbeats, which may require treatment
  • Low blood cell counts. Your doctor may do blood tests during treatment with Rituxan to check your blood cell counts

Common side effects during Rituxan infusions include fever, headache, chills and shakes, nausea, itching, hives, cough, sneezing, and throat irritation or tightness.

Other side effects with Rituxan include infections, nausea, diarrhea, headache, muscle spasms, anemia, and peripheral edema (swollen hands and feet).

These are not all of the possible side effects with Rituxan. Tell your doctor about any side effect that bothers you or that does not go away.

Please read the Rituxan full Prescribing Information including the Medication Guide.

If you have any questions about this information, be sure to discuss them with your doctor.

14

Although, Rituxan did not seem to help me stay stable, I did not have any serious side effects from the infusion. I was expecting a reaction because I had them with so many other treatments including IVIG. I also had once weekly infusions for 4 weeks. The only reaction I had was a little irritation of oral mucosa. It dissipated in about 4 weeks. No other long term side effects to date. My only treatment was one year ago. I have since gone through Stem Cell Transplant and have had very favorable results. I am Day +99 with no treatment for CIDP other than pain meds for nerve pain. I am in remission and gaining strength, stamina, and regeneration of nerves.

15

Does anyone know if Rituxan is something that is ever used with Plsamaphresis instead of IVIG ?

16

I did a brief online literature search to try to answer B's question.

Rituximab was used for at least one patient with CIDP who was also being treated by plasmapheresis. The reference is:

Chronic inflammatory demyelinating polyradiculoneuropathy in a patient with systemic lupus erythematosus and good outcome with rituximab treatment. </pubmed/21922339>

Sanz PG, García Méndez CV, Cueto AL, Silva VB, Walther JC, Diez RA, Martins S, Giannaula RJ.

Rheumatol Int. 2012 Dec;32(12):4061-3. doi: 10.1007/s00296-■■■■■■■■-5. Epub 2011 Sep 16.

The abstract indicates that rituximab was successful in this case. To get more information, you need access to the journal article, which I don't have.

Rituximab has also been used by patients taking plasmapheresis for other autoimmune disorders. For example, see:

Rituximab Can Be Combined With Daily Plasma Exchange to Achieve Effective B-Cell Depletion and Clinical Improvement in Acute Autoimmune TTP

Kamran Darabi, MD, Anders H. Berg, MD, PhD

Am J Clin Pathol. 2006;125(4):592-597

http://ajcp.ascpjournals.org/content/125/4/592.full.pdf

Interestingly, plasmapheresis can be used as an antidote when rituximab causes severe adverse effects because the removal of the patient's plasma also removes rituximab. Therefore, it seems better to have plasmapheresis prior to rituximab treatment, to avoid removing rituximab before it has done it's job.

17

Thanks for the information John J I’ll look into this. B