16 Comments
Oct 17Liked by Gavin Giovannoni

It looks like my pneumonia wasn't severe, at least according to your criteria :-)

I was bedridden for 2 months, had 20 days of oral and 14 days of IV antibiotics; and after I got better, my MS started to slowly get worse (from EDSS 1 to EDSS 4 in 1,5 years).

Regardless of the statistics shown in your article, I am glad that I switched to Mavenclad, after 6 years of Rituximab/Ocrevus.

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Wow that’s a big jump in EDSS from 1.5 to 4 from a serious infection. I’m also thinking of changing to mavenclad after what I’ve endured the last few months since the last dose. Has your EDSS improved?

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Yes, a huge jump, and it really took a toll on me both phisicaly and mentally, cause the worsening was happening so fast. EDSS hasn’t improved, but I believe I didn’t get any worse for the past 9 months. So I hope and pray that it will stop

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founding

Surely bedridden for 2 months is incapacitated so criteria 2?

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Hello 😊 I didn’t mean bedridden as totally disabled, but I was on sick leave for that time. had to go to my nurse every day for IV antibiotics, thus, had to walk up&down the stairs (I live on 4th floor with no elevator). So “techically” I wasn’t incapacitated 😊

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Oct 17Liked by Gavin Giovannoni

🌹🌻🌸💐💚💛💜❤️🌼😍🥰

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I can't believe this is your article. I literally just learned about you and then this is your topic. The timing is uncanny.

I have had 3 doses of Rituximab (started November 2022). I have been having chronic mouth ulcers, vaginal yeast infections, nasal staph and worst of all upper GI issues (suspect SIFO/SIBO). I am under weight plus the digestive issues affect my already horrible sleep.

My IgG levels were okay in May so my neurologist is blowing me off. Despite the fact that my white blood cells and neutrophils were high in May. I wonder if I can just be on acyclovir and an antifungal, but stay on the Rituximab? But I can't even have a conversation with my doctor. He automatically referred me to the pharmacist to talk about different options. None of them particularly good. I am so upset. I doubt he would listen to this article. It's an HMO and they ignore patients who are outliers. I am always the outlier, the zebra. 😔

Thank you for all that you do! I will attempt to use what I am learning through all of your information best I can.

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I feel you. When I started Rituximab in 2018, I started having frequent UTIs. My methods of prevention which worked prior to Rituximab suddenly were not effective. My neuro dismissed me, and told me to drink more cranberry juice. But I knew something was off. Fast forward 6 years, and she told me "You are prone to UTIs because of Ocrevus". Wow, like I didn't know

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founding

Thank you for posting this paper summary. It is very hard to find quantitative information on risks vs benefits in taking DMTs. As an older person with relatively mild MS who has never been on medication I feel the decision not to be on any DMT has been made for me. It may be the correct decision but I do not feel well informed or involved with the process of deciding. I would welcome any further information on this topic.

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founding

Wow the definition of serious infection is ummm much more serious than I realised. It seems like the consequences of the infection have to be dire for it be considered serious. Is not being able to work because of infection considered “incapacitated “?

(It’s incapacitating in late stage capitalism to not be able to work for even a short time imho).

There’s definitely a level of infection right below “serious “ that massively impacts pwMS and our quality of life. Get infection, can just work and/or just look after self but no exercise, hobbies, sports, social life. And the increased ms symptoms from infection and antibiotic side effects pile on the misery. And all the effort to self manage the infections, to get into a GP appointment/urgent care/ER and get taken study so it doesn’t become “serious “ is draining in itself. Repeat over and over and even though none of the infections technically meet “serious” definition the situation feels “serious “ and you’re declining and have shit quality of life just from infection and antibiotics. So maybe not “serious “ But definitely “significant”!

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Couldn't have said it better myself. For example, constant UTIs. They are not severe in accordance with prof G's criteria, but they *significantly* impact my quality of life, due to all reasons you stated above

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My daughter (USA) has had RRMS for 20 years and has been on Rituximab for about 10 years. After the last couple years of chronic sinus infections, she has been prescribed subQ IG infusions (in addition to the Rituximab) which she does at home. This has helped.

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I’ve loved reading your opinions and case studies in particular on changing anti cd20 treatment and have found comfort knowing how patient centred you are compared to many doctors looking at statistics not the person. I also found it comforting to know you have observed many people coming off Tysabri to ocrevus experience severe fatigue and adverse symptoms so I am not alone.

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Thank you G.G!

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I agree the definition of serious infection is more serious than I thought, death and ITU admission! Though disabling fatigue and mobility for weeks is bad enough especially with a young family! I am new to Ocrevus and have persisted for almost 12 months, due 3rd dose next month but the longer I’m on it the worse I feel in terms of EDSS, fatigue, walking and balance. For this reason I am thinking of changing DMT’s as the decline I’m seeing is worse with each dose and each infection - I have two young children age 4.5 and 1.5 and unfortunately get everything they do. Since the last dose in June I’ve had RSV, gastroenteritis and many minor viruses where the only symptom is disabling fatigue/mobility.

My MS was only dx 2017 (7yrs) age 35 (now 42) – moderately advanced with many spinal lesions and treated with Lemtrada initially 2017/18. Was relapse free 5 yrs - had two baby girls but relapsed in 2022 just before 2nd pregnancy. Commenced Tysabri for 1.5yr until Dec 2023 and was great until changing to Ocrevus! The decline is incredible coming off Tysabri and has me worried I’m smouldering or going to SPMS so I’m wondering if Kesimpta or Mavenclad might be better options. I’m a little put off by anti CD20 therapy so kesimpta is not appealing although more certainty with maintenance but could make me feel worse in terms of more infections. Mavenclad seems the better option to allow immune reconstitution but more uncertainty with 2 yr course. The question is am I smouldering and having these symptoms or is it the ocrevus and infections and/or post partum post relapse effect from 2022 catching up with me now? Wish I had the answers!

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I stopped ocrellizumab over two years ago when I decided to try cladribine. I could only do one year of it as my immune response was so weakened. I actually ended up in septic shock and nearly died. I was recently back in the hospital with another serious UTI, with 3 types of nasty bacteria that also included ESBL. So now I have graduated to drugs like ceftazidime-/-avibactam. Also the nursing facility where I reside lied to the hospital and told the hospital they would have the antibiotic ready for me when I arrived here, otherwise the hospital wouldn't have released me (to make sure continuous infusions on time for all seven days). But they only called the pharmacy when I arrived back, and now I have to wait over 16 hours for the next infusion. I am only on day 4, and their negligence is eventually going to end me. It almost did the last time, as they did this before and I ended up back in the hospital five days later with a worse infection. I will be contacting the state health authority in the morning and filing a formal complaint.

Wish me well that my health does better than my complaint probably will... bureaucracy, ugh.

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