Rituximab Therapy

[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.

[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..

[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

[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!

[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.

[MSLazarus]

Thanks for the update

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

[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]

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

Rituxan and ocrevus are almost identical. Rituxan costs less.

[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]

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.

[AMFADVENTURES]

Hey Suebee, Medicare pays for my Rituxan through my HMO. It is on the Medicare approved drug list for MS. I might also say that although the Rituxan hasn't entirely stopped my MS progression, it has significantly slowed it down. Hopefully you will at least get that much relief from the Ocrevus.

Larry

[Suebee]

Infusion update

Hi all, I wanted to give infusion update. I had ocrevous first dose, split in half and given 2 wks apart.
In general: I feel pretty good, in fact after 1st infusion I felt fantastic. I had more noticable energy and physical wellbeing. I rested 1st day per nurse instructions and then was quite active for me in subsequent days. After second infusion, I had something I needed to attend 1st day so didnt rest. I had a similar sense of wellbeing but felt fatigue requiring me to rest day 2 and 3.

The procedure: at hosp is infusion with steroids, followed by benadryl, then the ocrevous. It takes several hours. They start off slow and increase rate of infusion every 1/2 hour. The benadryl makes you sleep. I brought my own lunch, device to listen to with earbuds, and my hubby. I choose a positive meditative audio to listen to during infusion. I'm sensitive to the noise of clinic and earbuds took care of it. Nurses keep an eye on you for reactions. I had none.

Post infusion: The night of first infusion my throat felt a bit scratchy so I took oral benadryl per nurse instructions. The second infusion my eyes felt a bit scratchy/ achy so I took allergy eye drops. Both symptoms were mild and effectively managed. I've had some head aches but not sure cause.

Infection prevention: my family understands the importance of me not getting sick so if they feel under the weather they dont get in my face . I got a few superficial skin cuts that I normally would have ignored but I promptly cleaned and treated. I changed my toothbrush, use paper towels instead of family hand towel, went back to using strong mouthwash everyday, and put small handsa iter bottles in car and purse. When I had to take my child to urgent care and had to sit in a flu infested waiting room, I donned a face mask. I know basic surgical masks aren't too effective to keep out virus, but I felt better wear it anyway. My sick, normally embarrassed my mom teenager, r didnt mind. She is a Sweet kid. I recently found MS blogger Tripping on Air and planned on ordering a "cambridge mask" that she suggested for these type situations and kicked myself for not getting one sooner. and when I tried to order one on my phone from the urgent care lobby, I discovered they are sold out because of coronavirus fears. I will get one for this type situation when restocked. FYI - a dr on radio said that the pneumonia vaccine will be effective to prevent pneumonia if one gets the coronavirus because pneumonia is a secondary infection from virus. I hope so. As a reminder, consult with your doctor and update your vaccines before going on orcevous.
I hope that gives helpful info to anyone considering it. Suebee

[MSLazarus]

Thanks for the update

Wishing you all the best and really appreciate the details you provided. I have been ill for a few months and it could be rituxan side effects. Or not. Ruling things out one by one. So I might switch to Ocrevus.

I have been coughing since November, shortness of breath, back pain and others. Life has been disrupted although I still have a lot of energy. Chest X-ray clear, cat scan clear etc....heart tests coming. Using an inhaler now and it helps stop the cough. Surprised me!

[Suebee]

Thanks MSLazeros. I'm glad all tests showed clear. Both rixtaub and ocrevous can cause respiratory infections. You might want to try tumeric either a capsule or tea. I drink tumeric tea sometimes. I dont like taste, and it can upset my stomach, but do I do it for health. Science backed data shows it has an antihistamine effect on mast cells responsible for inflammation in lungs. It actually is shown to help with all types of infections. Here is article about study on lungs treated with a capsule tumeric amt. Might be worth a try.
Also, remember to brush and change toothbrush often. It is easy to forget about it but oral health is very key to staying well. I sometimes feel so fatigued at nt that I dont want to do bedtime routine but I make special effort now to brush floss and mouthwash. Simple but hopefully effective. I hope you feel better soon. Suebee

[Suebee]

Link to tumeric article

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4190737/