So, what do you think about what my possible new neuro told me…

[Lazarus]

Today I saw new neuro where I have been going for years and next week I see another neuro at an MS clinic in Worcester…sort of for a second opinion.

anyway, he was insistent that it would be good to switch from rituxan to Ocrevus. He said that the side effects from rituxan make such a switch a good choice. I asked what he meant by side effects as I have none with rituxan. He mentioned potential liver damage and I am now realizing I do not know what other effects he was referring to.
he also said my MRI showed no disease activity. This is always true. My mri’s never show activate lesions anymore but I have continued to get worse for all these years. My previous neuro used to tell me that the mri did not always correlate to the status of your MS.

so, I will ask the MS doc next week and see what he recommends. I do not mind Ocrevus as it is simpler to take! And I am getting worse so I was considering asking about it anyway.

the meeting was short bu he had definite opinions and I appreciated that. If I keep this guy It will be easier because the hospital is 20 minutes from home.
getting to Worcester is expensive because I have to hire a driver…the day will cost me several hundred dollars. The information on why he thinks I should stop rituxan and also his dismissal of the need to get the evulshed shots because the rituxan laves me vulnerable…he may be right in that thinking or…he may be telling me the current thinking without really knowing my case fully yet.

i am unsure about the information and want to make sure of his recommendations.

[agate]

This new neuro sounds like a good idea to me. If transportation to/from appointments is better, that's pretty important, IMO. If you can discuss your concerns with him--if he's not one of the "It's my way or the highway" doctors--sounds to me as if he's all right.

You wouldn't have to agree with him about changing from Rituxan to Ocrevus, would you? I'd like to know what side effects he's referring to. According to this Cochrane review, the SAEs for rituxan don't seem very significant:

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If he's open to discussing his views and will listen to what you have to say and even agree to go along with whatever alternative you're favoring, I'd say he's a keeper. It's the doctors whose minds are made up and who don't even give their patients a hearing who deserve a red flag. After all, it's your body and you probably know its quirks far better than anyone else. You know what feels best and what you can tolerate. Doctors ought to have more respect for that idea, I think. They are just part of your team, not divinely inspired authorities.

[SuzE-Q]

I always thought that Rituxan had a better side effect profile although that may be because it is not quite as effective. I seem to recall lesser risk of neoplasms with Rituxan than Ocrevus although I don't see it in this article. I looked at them both and that was an important factor when I was considering them. I wonder if other research has been posted here about this point.

I attach this excerpt from a review article published July of last year (emphasis [bolding & underlining] added by me):

"A new retrospective study, comprising RRMS and SPMS patients treated with rituximab (n=311) and RRMS patients treated with ocrelizumab (n=161), compared tolerability, safety, and immunosuppressive effects of the two anti-CD20 drugs over the first year of treatment (Only registered and activated users can see links., Click Here To Register...). The researchers found that ocrelizumab, but not rituximab, was associated with a decrease in IgG of 0.16 g/L (95% CI, 0.01–0.31) with each infusion (a reduction that may increase susceptibility to infections), whereas IgM decreased to a similar extent with both drugs and IgA levels were not affected. CD19+ B depletion was greater with ocrelizumab. Infections and SAEs were more common in the ocrelizumab group, whereas incidence of IRRs [infusion-related reactions] was identical to that of rituximab. No statistically significant differences were observed in the proportion of patients discontinuing treatment within the first year (10% with rituximab and 15% with ocrelizumab, p=0.11). However, although the discontinuation due to lack of effect was low and not significantly different in the two groups, discontinuation due to AEs was more common with ocrelizumab than with rituximab. These findings corroborate the idea of the non-inferiority, in terms of tolerability and safety, of rituximab to ocrelizumab, and substantially confirm that the development of anti-drug antibodies, higher with the more immunogenic rituximab and potentially associated with reduced efficacy and increased risks of IRRs, is of marginal clinical importance.

Another recent study analyzed AEs [adverse events] reported for rituximab and ocrelizumab in the real-world practice setting using the Food and Drug Administration’s Adverse Event Reporting System (FAERS) database (Only registered and activated users can see links., Click Here To Register...). The database contained 623 reports with rituximab and 7948 reports with ocrelizumab. Patients treated with rituximab were on average older than patients treated with ocrelizumab and progressive forms of MS were more frequently found in the reports associated with ocrelizumab (21.2% vs 5.6%). Rituximab was associated with a higher proportion of reported SAEs [significant adverse events] as compared to ocrelizumab (64.8% vs 56.3%, p < 0.001). AEs resulting in death were found in 5.7% of rituximab reports versus 2.1% of ocrelizumab reports (p < 0.001). The study revealed significant differences in reported AE profiles in the real-world setting between the two anti-CD20 drugs, with frequency of reported infections (especially oral herpes, urinary tract infections, and nasopharyngitis) nearly two times higher with ocrelizumab (21.93% vs 11.05% of rituximab), whereas no significant differences were reported for IRRs.However, the risk of bias in spontaneous reporting system, above all under-reporting and the tendency for SAEs to be reported more frequently, should be considered.

Preliminary results from an ongoing phase III trial (ClinicalTrials.gov Identifier: NCT02980042), evaluating tolerability and safety of switching from rituximab to ocrelizumab in adult patients with relapsing forms of MS (Only registered and activated users can see links., Click Here To Register...), reported a similar incidence of IRRs between patients continuing rituximab and those switched to ocrelizumab and suggested a correlation between levels of CD19/CD20 B cells and risk of IRR (with a decrease by 74% of the risk when CD19 and/or CD20 were ≤1%).

Perez et al. confirmed the similarity of rituximab originator and biosimilar in 145 MS patients (RR and progressive) (Only registered and activated users can see links., Click Here To Register...). Patients in the two groups did not differ in CD19+ lymphocyte counts at each follow-up examination and showed a comparable reduction in relapse rate at 12 months (from 0.50 to 0.02 for originator and from 0.40 to 0.025 for biosimilar), whereas EDSS remained stable in both groups at 6 and 12 months. The proportion of patients with MRI activity on the first scan after starting of rituximab was similar between originator and biosimilar (1% and 0% of patients with GAD-enhanced lesions, respectively, p=0.41; 10% and 12% of patients with new T2 lesions, respectively, p=0.76). On the second MRI after rituximab initiation, only one patient in the entire population (treated with originator) showed a new T2 lesion, whereas no new GAD-enhanced lesions were detected. AEs were also similar, with mild-to-moderate IRRs being the most frequent AEs. No severe or opportunistic infections were reported, and no patients discontinued rituximab after 1 year."

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Glad you are going for a 2nd opinion, that's a smart approach. Please let us know what you learn!

[Lazarus]

This is the perfect article….just what I always thought from my readings….
The neurologist I saw was kind and knowledgeable but more assertive than I have ever dealt with….I am sure he is overwhelmed because this area of western MA seems very short on staff. This fellow’s academic profile is impressive. Still, I am glad I have an appointment at an MS clinic next week.

I have lost all connection (through retirements) with neurologists who knew me, my history, my life. My goals have to incorporate John’s health and our farm. Ocrevus with its profile of inefections worries me. I have never had a uti and that is a concern with Ocrevus. Now that I am older and doing less reading of MS articles…there is suddenly a greater need for me to follow current studies.

[SuzE-Q]

When I was talking with my neuro about these options, I remember saying to him that "I do not want to die from herpes because of my MS treatment!"

But, it does appear that some evidence suggests there is a higher incidence of cancer in those on rituximab than those on ocrevus. I don't know how strong this research is. Since Ocrevus wipes out more CD20, I'm not sure why this would be though.

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I'm not comfortable with my neuro either. It is so important that we have a strong bond, these are such serious decisions and our trust in our neuro and our relationship is so critical. I'd probably be more proactive if I had a better relationship.

[Lazarus]

Thank you all for the responses…I also spent the day rechecking information I had stored away. My thinking is to stay on the rituxan although I was considering Ocrevus because my ms has been raging for months.
I was also wondering about kesimpta…SSusan was and maybe still is taking it.

now that I am home and digesting this first meeting I am not sure so glad I have the appointment at the MS clinic in Worcester. I so miss my 2 retired neurologists. I have not felt this along in the struggle since…..since ever!

[agate]

There's also this, from August 2020:

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[Ikoiko]

This gives me a place to talk about my first appointment with the Jonhs Hopkins MS Cinic I had 2 weeks ago. I moved from the Boston area and the Beth Israel Deaconess Medical Center MS Clinic to Maryland in November. It took me this long to get into Johns Hopkins.

The new neurologist strongly suggested that I get off Rituxan due to my age (64) and the fact that I am now more susceptible to the stronger drugs causing infection and cancer. I have had shingles twice since being on Rituxan, and he did not like that at all. He told me a scarey story about a patient of his on Rituxan who had shingles spread to the brain with disastrous results.

So, I have agreed to go back on Avonex.

He did say that I could consider going off disease modifying drugs altogether since I have not had any new lesions in many years. But I certainly don't agree with that! No new lesions means that my my MS drugs were working!!! Plus, we all know what happened to Catdancer when she stopped her drugs!

In summary, BIDMC is a lot more aggressive in treating MS than Johns Hopkins.

Best to you, Linda.

[SuzE-Q]

Sounds like a smart move, Ikoiko, your doctor's patient experience is exactly what scares me. You can reflect or even go for a 2nd opinion later on if you want to revisit this issue. It should always be a fluid situation up for discussion as new research is published.

[agate]

Good luck with returning to Avonex. Won't you be starting from scratch with it even though you were on it a while back? I recall my first year on Avonex was fairly "challenging," with flu like symptoms lasting at least a day after each weekly shot, and some depression as well. Tylenol helped with the flu-like symptoms but I don't know if I'd want to go through that adjustment period again.

Shingles spreading to the brain? That's scary.

[Ikoiko]

I do get very bad flu-like symptoms on the interferons, but the neuro scared me off the high powered drugs, and I am allergic to Copaxone. So I will give it a good try.

[Virginia]

Ikoiko, for some odd reason I liked Rebif a little better than Avonex. Avonex was not really bad except that at the time I took it it was a once a week shot that I had to give with a very long needle. I understand that now it has changed and it is given more like Rebif which is sub-q 3 times a week.
They are basically the same medication, but I was told that Rebif is just a bit stronger.

I would be very upset if my Neurologist suggested that I should give up my MS medication. Suze-Q posted an article about older people should remain on their medications. Since then I read that older people on the injectibles should not come off them. I do not at all consider you older, but a even in your 60s I would think it would be risky.

Interesting, the difference in your Doctor in MA and the one at Johns Hopkins.

[Ikoiko]

Avonex is still a once a week intramuscular injection. I switched to Avonex in 2020 so could build up B cells while I waited for the Covid vaccine to be developed. By the time the vaccine was released, I had enough B cells for the vaccine to be effective. Then I switched back to Rituxan.

[Virginia]

So, I was wrong about it having been changed to 3 times per week. I had some side effects from it, but always thought it was because it was all in one big dose. Glad you told me this, not that I was considering changing anyway, but now I will not give out any false information about it.

[SuzE-Q]

Virginia, you're probably thinking of cooaxone, it offered a stronger 3x/week formulation rather than every day, I recall.