Rituximab Therapy

[MSLazarus]

You are correct

The deal is that rituxan was running out of its patent time so the company tweaked it and came out with Ocrevus......essentially the same item with a much higher price tag.

My insurance company has been great about paying for my not officially approved meds for almost 30 years. My luck comes from having dealt with melanoma. The cancer is gone but it is what allowed me to take some drugs not identified as MS drugs.

When Ocrevus was approved there was talk about forcing MSers off rituxan. Once again cancer saved me from that becauseOcrevus has a slightly higher cancer risk.

[Suebee]

Yes, rituximab and orcevous are nearly identical. My understanding is that I can’t get rituximab prescribed or covered by my health insurer here because it is still classified as “experimental” for MS. Although it is approved for other immune disorders. Orcevous was developed AFTER rituximab but only Orcevous is approved by FDA for treatment of MS. This as I recall, has a lot more to do with patents and less to do with safety or appropriateness. I think those who are rixuximab are enrolled in trial or their insurer allows this so called “experimental” drug to be prescribed and covered under certain circumstances. Maybe one of you Out there can add to my glib understanding of how rituximab is prescribed and covered??? I seem to recall postings on this forum some time ago about this issue, but couldn’t locate place.

[MSLazarus]

2 long infusions given two weeks apart is the protocol for rituxan infusions also.

Rituxan and ocrevus are almost identical. Rituxan costs less.

[Suebee]

Path to orcevous update

I was on phone total combined of several hours with PPO and Pharmaceutical manager for PPO about whether my private health insurance covered this drug AND the infusion service. The reason PPO customer rep wasn’t able to give me full answer was because (if you live the States) you know benefits are governed by your corporate specific insurance contract and customer reps aren’t able to check that easily. I finally got confirmation verbally that the drug was an approved drug and infusion services are covered, but no $$$ figure! (Although I note on the recording I listened to while I was on hold stated that “verification of benefits was not proof of coverage”. (a.k.a. Mad hatter). With regard to my out of pocket cost I was referred to my hospital billing department to figure out. This is because each and every hospital has a contractual agreement on amount of reimbursement from PPO and the insurer rep can’t easily check that either. But Hospital billing referred me to Orcevous pharmaceutical co Patient assistance program to speak with because, bonus, it will pay some or most of my copay. Ocrevous copay customer rep took a few identifiers from me and generated a drug Id # for me and instructed me call back the hospital and give to hospital. At this point I assume hospital and pharmaceutical co calculated how much my PPO will pay as part of my PPO benefits and what was left over as my out of pocket costs, which the pharmaceutical co will kindly assist me with. Don’t get me wrong. I am grateful my PPO will cover this drug and it’s infusion and that the pharmaceutical co will assist me by paying some or most of the thousands of dollars my out of pocket costs will be. But isn’t this a ridiculous way to get medicine? And The answer is not to get rid of copay assistance programs, as some have suggested, because I could not afford to use this drug otherwise. Co pay assistance or “coupons” have helped my family with other medications. Nevertheless It shouldn’t be so difficult to calculate your hospital bill. Insurers need to streamline their processes and be as politicians say “transparent” and hospitals need to be able to easily access your benefits to similarly be “transparent” about your out of pocket costs. “You would have to be half mAd to dream me up” Alice in wonderland

But I probably preach to the choir here when I say it is too complicated to find out how much medical services cost since chronic illness means one has to deal with insurers and providers regularly.
[out take—-Have you fellow MSers figured out that I have too much free time on my hands? I’m stuck in what I call a MS limbo. I had problems working full time because of MS, But now what? How many times do I need need to reinvent myself and career? How can I use my precious energy reserve? How can I contribute? What do I do? I’m not immobile. But I need to rest often. But im not retired. But I’m slow. So frustrating to be this, grateful for the day but finding the day is quite long.]

Well, I’m on the hospital infusion schedule for next month. The first dose is spit in half and given 2 weeks apart. Im hopeful it will make me feel better so I can get on with things.

[MSLazarus]

Thanks for the update

Wishing you all the best.....sounds like you have good information.

[Suebee]

Update on my journey to orcevous__
As AM suggested, really important to update vaccines prior to beginning treatment. I took Am's suggestion and I had Tdap vaccine and pneumonia vaccine after discussion with internist. I decided to not have shingles vaccine because non live version requires a series over 3 months and I'm anxious to begin orcevous soon. Discuss which vaccines are appropriate for you with dr.
I think I stated before, but really important to make sure uptodate on preventative screenings- mamogram, pap, skin biopsies, colonoscopy, etc because orcevous might increase cancer risk. I cleared this hurdle.

Next step for me is to get insurance clearance and estimate on cost. With commercial insurance, orcevous has a copay assistance. One calls orcevous and gets "authorization" for copay assistance( there are eligilblty requirements) and then give authorization # to your hospital's infusion insurance coordinator. The hospital then will give you estimate of your out of pocket for your both the infusion service and the drug. Note these are billed separate. I'm at this stage now, coordinating between hospital, orcevous company, and insurer with as much patience and grace I can muster.

[AMFADVENTURES]

A couple of key take aways from the recent Rocky Mountain Multiple Sclerosis Center education summit on MS.

1) Truxima, the new Rituxan biosimilar is essentially Rituxan.

2) Except in rare cases, the RMMSC has NOT seen a reduction in efficacy with long term use of either Rituxan or Ocrevus.

3) Suebee, being proactive about getting vaccinations prior to any B-cell disease modifying treatment is important as vaccinating post B-cell therapy can significantly reduce the effectiveness of the vaccinations. Also they do not recommend any live virus vaccinations for persons currently on any B-cell immunotherapy.

4) the RMMSC is leaning toward the Mediterranean diet as being the most beneficial for brain health in PwMS, based on benefits seen in the general population.

5) The RMMSC believes that early treatment with one of the B-cell biologic DMT's could result in a significant reduction in the progression of PwMS to Secondary Progressive MS.

6) Exercise is not only critical for PwMS but is the ONLY anti-aging therapy available today, based on studies in the general population.

These guys always do a great job of clarifying what is currently known about MS and bringing relevant new information to PwMS. You can sign up for their news letter by Google-ing the Rocky Mountain MS Center. Also the recent Education Summit should eventually be available on their website site.

Larry

Ps: And just one more thing, the RMMSC is just about 100% in agreement with anything you might see on the ActiveMSers Web site! It took them a while to catch up to us but one of the foremost MS clinics in the world is finally here!

[AMFADVENTURES]

AM, great idea about updating vaccines before starting treatment. What vaccines did you update? Tetanus seems like a good one. I had last round of vaccines when I entered grad school, awhile ago . I know there is concern about adults immunity to measles wearing off. I think I can get internist to ck titers of antibodies of different illnesses. But I'd love to hear what your doctors recommended for you.

Hey Suebee, my neurologist and PCP recommended flu, pneumonia, tetanus, hep A, hep B, shingles, typhoid and yellow fever vaccines prior to my first rituxan infusion. The typhoid and yellow fever vaccines were recommended because I was considering a trip to Africa. At the time I was current on shingles, tetanus and yellow fever and I did not experience any problems with the others. The yellow fever vaccine is not widely recommended for PwMS, it is the only one that uses an attenuated live virus. Some of these vaccinations involve a series of shots so can take time to complete.

Good luck,

Larry

[MSLazarus]

It is called the MS Hug,

Even when you know you get it you are worrying it might be a heart attack.

I am lucky because they hang around for a few weeks, take a break and then return in another period of several weeks. I use 5 mg Valium and it stops it. Valium is a muscle relaxer..

[Suebee]

Vaccines before treatment?

AM, great idea about updating vaccines before starting treatment. What vaccines did you update? Tetanus seems like a good one. I had last round of vaccines when I entered grad school, awhile ago . I know there is concern about adults immunity to measles wearing off. I think I can get internist to ck titers of antibodies of different illnesses. But I'd love to hear what your doctors recommended for you.

[Suebee]

MS L, thank you for sharing your experience and your perseverence. I get strength and courage from this forum, and visualizing you farming pushed me to complete some of my important domestic mom suburban tasks. thank you.
BtW i also have chest pain but not cramping. It is real squeezing/ or pressure. It fluctuates and can be severe. No real answers from drs. Some rib cartilage is inflamed on films. I think drs see it as anxiety driven, but overtime I trusted myself, it has another cause. I blame MS malfuntion nerves, but no diagnosis particular to chest pain. Did doctors explain to you why it happens?

[MSLazarus]

knowjust to be clearer...

I have done my major meds for many years before they wear off. Betaseron when it came on the market...IVIg for another 8 years. (170g every other week)....novantrone for the allowed limit...have been on rituxan for many years now...and yesterday was a harsh physical day on farm and I barely crawled into bed at 6 last night but here I am, it is around 7 the next morning, and I am moving and alert. That is the rituxan which I do squeeze the last drop of goodness from! My next infusion is in December.

[MSLazarus]

Great...I hope you go

I saw Vollmer sometime around 2001. I saw him several times as he and my own neurologist were trying to figure out my next step. He is great.

Several years later I saw him at a conference and asked a question and mentioned that I had seen him several years earlier. He said that he remembered me. I told him that of course he did not remember me but I remembered him! He laughed heartily because it was true. But he had a huge impact on my treatment for a decade.

Almost everything I have taken wears off and becomes ineffective. But I have been helped by everything.

My chest spasms are extremely painful...as if I were having a heart attack. Does not feel like cramping. But that info on cramping is unique. I will pass it on to a friend.

[AMFADVENTURES]

Hey Linda, sorry to hear the MS is acting up, falling that much is not a good thing! Are the chest spasms like a cramp? If they are, here's something you might try, I'd give it a slim chance of working. Mustard! Like from a fast food packet. Put a little on your tongue and swish it around in your mouth. The vinegar in the mustard hits a trigger point on the tongue which immediately causes the cramp to release. A non MSer friend of mine who is prone to crippling cramps while cycling swears by this. Consequently I now try to carry mustard with me when I go for long rides, just in case.

I don't recall ever having seen a study concerning long term effectiveness of Rituxan so now you have me wondering? I feel the same way you do, that my MS would be much worse without the drug but I too wonder if it's effectiveness might wear down with long term repeated use. I just posted news about an upcoming RMMSC Summit to be held in Denver on November 9th. Dr. Vollmer will be there and they have normally taken questions submitted in advance for Dr. Vollmer to address at the end of the session and the Long Term Effectiveness of Rituxan sounds like a good one!

I wasn't planning to go to this conference but perhaps now I will as I'm not sure whether or not you have to be present to submit a question. I'll let you know what happens.

Suebee, couldn't agree more about self advocacy and you certainly seem to have it under control. The only other thing I can recall my Drs. recommending before I started infusions was to get current on vaccinations.

Again, hope it works for you,

Larry

[MSLazarus]

Thanks for your story SueBee...

I am happy with rituxan. I am 72 now but am getting new symptoms which is irritating. I am a farmer and don't like it when the schedule is interrupted! (That means somebody has to do my work).

Right now we are thinking that I am having attacks but they would be even worse without the rituxan. I get well again and go on doing physical work pretty much as usual.

I am falling almost once a day and chest spasms are pretty intense. However, you should see all the fingerling potatoes I have dug!

Thanks everyone for information.