Rutuxin or Tysabri?

[Myoak]

Hello ru4cats!

I encourage you to add your perspective to that discussion. I wish that young woman could meet you, hear your story, and see the great condition you are in mentally and physically using Tysabri. You definitely should share your experience with her. It helps immensely to hear personal testimony.

Also, I will post my two cents over there later today or tomorrow. I did read through that thread and didn't notice anything that was inappropriate. Everyone speaks from their own experience and perspective; that is understandable.

I do agree with you that more should be said so I will add my voice and I encourage you to do the same. Keep in mind that this is her first post so MS and everything about it is new and kind of scary. I'm sure I have come on too strong with new people in the past and frightened them away by being too forceful in my opinions or presentations, sometimes anyway.

I will add my voice; it was thoughtful of you to ask. Thank You!

Best wishes on the appointment today!

[ru4cats]

Myoak,

There is a new topic over in general questions "21 and newly diagnosed" that could use your wisdom. I'm off to see my neuro today or would answer, but right now my "hair is on fire" with the responses so far. I believe your wisdom would go a long way. Wish MS Forum had a relatively easy way to private message someone. I might try later when I have a chance to calm down.

[Marco]

I do rituximab and prefer it to Tysabri and ocrelizumab.

I am jcv+ so I don't see Tysabri as a long term medication for me. I also want nothing to do with the possibility of Tysabri rebound.

Ocrelizumab is new to the market and I would like to see several years of results post-marketing experience before considering it.

For me, rituximab is an easy infusion every 6 months with no realized side effects. I have no intention of going off the medication in the foreseeable future.

[Myoak]

This is a very, very interesting thread, especially for pwMS in the USA.
If your neuro is considering Rituxan rather than Ocrevus he/she is absolutely brilliant, IMHO.

Why?

Because Ocrevus and Rituxan are very, very similar. Both are good meds for MS. Ocrevus was developed because the patent ran out on Rituxan. Ocrevus is tweaked Rituxan. Tweaked, primarily to get a new patent and charge at least 10x what Rituxan costs.

Since they are quite similar why do I think Rituxan is better?

Because the dose and the frequency of infusions can be individually tailored. The neuro does not have to give you a set dosage nor does he have to give it to you every six months as with Ocrevus. That fact might save your life if the spike in cancer rates seen during Ocrevus trials turns out to be an actual risk in real world use of Ocrevus. We don’t know, yet. However, we do know that Ocrevus keeps working at least 18 months after the last infusions during trials.
Here is a link proving that statement...

https://www.ebiomedicine.com/article...17)30045-2/pdf

Click the link and look at the chart on page 6. It shows that Ocrevus continued providing protection 18 months after no more infusions were received.

Clearly, Ocrevus every six months could be too much for some people. Especially if the cancer risk plays out. The cells being depleted by Ocrevus are needed to fight off cancer. So, if you over-deplete them, you may put yourself at an increased risk of cancer. Please understand Ocrevus is new so we have to wait to know for sure if there will be an increase of cancer seen using Ocrevus.

To me, it makes sense that it would, although it may take years to prove.

So, what would an excellent clinician do? I think he would give Rituxan only as often as his patient required. That means if there are no new or enhancing lesions or no new significant clinical signs of MS progression then you may not need an infusion every six months. And, if you get infusions you don’t need why put yourself at risk of cancer or any other health issue which may arise from getting more of an immune suppressing medicine than you need to control MS?

IMO, any doctor using Rituxan rather than Ocrevus is on top of all of this and far out in front of it. I envy anyone who has such a doctor.

Most neuros are going to infuse a person with MS with 600mg of Ocrevus every six months, period, end of discussion. That’s what the FDA approved and, by God (my sincere apologies, no offense is intended) 600mg every six months is what you are going to get even if it kills you; and for some it may… if an increased cancer risk is demonstrated infusing Ocrevus every six months.

Yes, I believe Rituxan is a better option than Ocrevus because I believe a neuro can more easily adjust the dosage and frequency with Rituxan. If you achieve NEDA (No Evidence of Disease Activity) with Rituxan your neuro is free NOT to infuse you until and unless you need it.

Its just as likely to achieve NEDA with Ocrevus but the difference is you are going to keep getting it every six months.

With Ocrevus a person with MS will get 600mg every six months no matter if you weigh 90 lbs. or 300 lbs. and regardless of the individual variance in B-cell depletion even though that depletion may be adversely affecting health issues outside of MS.
IMHO, it will be YEARS before this situation is recognized and adjustments made to accommodate it, if ever. Change happens slowly.

I pounded the table in heated discussion with my spouse’s neuro for an entire year before he finally agreed to extend time between doses of Tysabri to reduce PML risk. Based on that experience, I can predict it will be pure hell for any patient trying to alter the dose or frequency of Ocrevus. It is usually futile and can be extremely stressful arguing with a neurologist even when it is your life that is at stake.

IMHO, what makes Rituxan a FAR superior medicine to Ocrevus is that the dose and frequency of infusions can be adjusted individually as required.

If your neurologist is using Rituxan rather than Ocrevus you have an excellent neurologist, IMO.

BTW, one person said their insurance did not approve Rituxan. Wow, insurance ought to compare the cost of those two meds if they want to save a ton of money. Rituxan is far less expensive.

[Myoak]

This is a fascinating thread and I will address why in my next post but first I wanted to address the topic of PML using Rituxan with a couple of quotes...


"Supposedly, there are no cases of PML with rituxan in multiple sclerosis out of ~40,000 exposed patients. In one series, there were 4 total cases in rheumatoid arthritis treated with rituxan out of 129,000 exposed, suggesting risk of ~1/25,000; 1 of these 4 cases was with no biologic and minimal immunosuppressive therapy.

Source: “Rituximab-associated progressive multifocal leukoencephalopathy in rheumatoid arthritis JAMA Neurology, “09/14/2011 Clifford DB et al.

Reply

Dr. Gavin Giovannoni Tuesday, December 16, 2014 10:16:00 am
Thanks for this. I sat on an PML advisory board several years ago and we reviewed all the PML cases linked to rituximab; we didn't find a single case on monotherapy. The one case referred to here on minimal immunosuppressive therapy had been on steroids. The take home message is that the risk of PML on rituximab is very low; the caveat being carryover PML from natalizumab. I think rituximab, and by inference ocrelizumab and other anti-CD20 therapies, will be a relatively safe drugs to transition onto from natalizumab."

http://multiple-sclerosis-research.b...l#comment-form

[Medina89]

They are both based on antibodies that manipulate the immune system, but I think I recall Rituxan to be a chemo drug approved only for people with RA and Non-Hodgkins Lymphoma.

As I recall, they were doing Phase II or III trials on MS & Lupus, but I think Biogen (same makers of Tysabri) MAY have pulled out of those trials for now because it was discovered that Rituxan may have caused PML with Lupus patients who were using it off-label.

I think there are still Lupus and MS patients using it off label though.

I've heard of several known cases of PML (20+) potentially associated to Rituxan use, but that was over many years/thousands of Lymphoma patients. I guess PML is can occur occasionally with Lymphoma patients anyway . . . so it may hard to tell if it was Rituxan or cancer that caused the PML. (Same thing I mentioned concern about in that other thread you started .... with Tysabri now being tested on cancer patients).

Rituxan is one of the most safe medicines out there,and probably most safe for ms,,,my doctor has prescribed it since 2008 to MS patients.

Regarding PML keep in mind RA and lupus patients use many other medicines and plus much bigger dose of rituxan(2000 mg in 2 weeks compared to ms patients who use 500 mg)

[ru4cats]

"RITUXAN is not chemotherapy. RITUXAN is a type of antibody therapy that can be used alone or with chemotherapy. They work in different ways to find and attack the cells where cancer starts. RITUXAN targets and attaches to the CD20 protein found on the surface of blood cells with cancer and some healthy blood cells."

Perhaps you are thinking of Lemtrada that is a chemotheraphy drug.

[Jabrti]

They are both based on antibodies that manipulate the immune system, but I think I recall Rituxan to be a chemo drug approved only for people with RA and Non-Hodgkins Lymphoma.

As I recall, they were doing Phase II or III trials on MS & Lupus, but I think Biogen (same makers of Tysabri) MAY have pulled out of those trials for now because it was discovered that Rituxan may have caused PML with Lupus patients who were using it off-label.

I think there are still Lupus and MS patients using it off label though.

I've heard of several known cases of PML (20+) potentially associated to Rituxan use, but that was over many years/thousands of Lymphoma patients. I guess PML is can occur occasionally with Lymphoma patients anyway . . . so it may hard to tell if it was Rituxan or cancer that caused the PML. (Same thing I mentioned concern about in that other thread you started .... with Tysabri now being tested on cancer patients).

[DCat23]

So glad it went well for you and everything worked out! This is reassuring as I’m very nervous as well. Hope it does what it’s supposed to for you.

[Medina89]

So an update

I had my dose today,i had 1000 mg and in 6 month i will have 500 mg ,everything went(thank you God! i was so nervous) well,i felt a little bit influenza symptoms but just a little my dr was wonderful when i was a nervous wreck,he came there to visit me few times and the nurses were almost all the time there.I feel good now and hopefully it will stop my MS

[DCat23]

I am from Sweden we do not have insurance ,we have a different system

Do you or anyone here know how long rituxan has been used for ms?

Lucky for you! I know my dr has been using it for MS for 16 years successfully.

[Medina89]

@medina89 did your insurance approve it already? I know what you mean. It’s all very nerve wracking. Good luck, sending you positive vibes. Keep me posted on how it goes.

I am from Sweden we do not have insurance ,we have a different system

Do you or anyone here know how long rituxan has been used for ms?

[DCat23]

I have not started it yet,i will this thursday hopefully but i am just as nervous as you.I am jcv positive as well but even without it tysabri seems so scary to me ,but i know it helps a lot people

@medina89 did your insurance approve it already? I know what you mean. It’s all very nerve wracking. Good luck, sending you positive vibes. Keep me posted on how it goes.

[Medina89]

Thank you @medina89. How is the Rituxan going for you? I am JCV+ so cant go on tysabri. Insurance just denied Rituxan so hoping the appeal gets approved. Did your insurance approve it on the first try? My dr said the same thing about Ocrevus and it also carries an increased breast cancer risk so not looking to go on that one.

I have not started it yet,i will this thursday hopefully but i am just as nervous as you.I am jcv positive as well but even without it tysabri seems so scary to me ,but i know it helps a lot people

[DCat23]

Thank you @medina89. How is the Rituxan going for you? I am JCV+ so cant go on tysabri. Insurance just denied Rituxan so hoping the appeal gets approved. Did your insurance approve it on the first try? My dr said the same thing about Ocrevus and it also carries an increased breast cancer risk so not looking to go on that one.