46 Comments
Mar 9Liked by Gavin Giovannoni

Sadly yes, which a simple Shingles vaccine at the start of Ocrelizumab may have prevented, had I been told of it.

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Mar 9·edited Mar 9Liked by Gavin Giovannoni

Yeah, I didn't think of that. I had a shingles infection and I should have been proactive about getting the vaccine since I am in quite a large nursing facility that isn't great about its procedures for limiting infection spreading, and keeping people informed. Many times during the Covid epidemic the onus was unfairly relegated to us residents to remind the CNAs and nurses (nurses... how ridiculous!) that they needed to wear a mask, or wear it correctly. I ended up getting infected with Covid at the same time as my shingles infection, from one of the staff, and I was utterly miserable for weeks! Sometimes the pain and misery was so bad that I started hallucinating, and it was horrible. I'm not on Ocrevus anymore, and my neurologist is smart enough to have waited well after any infections, and testing for any currently, before starting Mavenclad. He has since advised me against a second year of Mavenclad due to my propensity for UTIs, and my recent experience with septic shock.

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I hope you are feeling better :-( Good that your neuro took you seriously, and advised you against 2nd round of Mavenclad. I cannot tell you how many times I was gaslighted and felt like and idiot trying to explain how I feel....

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Thank you. Yes, I am.

Actually I wanted to keep going, but he explained how dangerous it was, and why it was dangerous, and that changed my mind. Yeah, gaslighting is horrible. Sorry.

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author

Joanna, the Shingrex vaccine is only been available in the UK since 1-Sept-2023 and then only for people who are 5 0 or older about to start immunosuppressive therapy. Prior to this the vaccine had to be via the private sector.

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Ahhh good to know! This makes sense why it’s not come my way.

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Mar 9Liked by Gavin Giovannoni

It’s difficult, which is an understatement, to be continually immunosuppressed. (I’m thinking chemotherapy here. It was the first time I knew I harbored HSV.) Now, with many people refusing even what I consider normal and necessary vaccines, I would be concerned were I seriously immunosuppressive. I had a relative on Remicade (inflixamab) for Crohn’s that eventually had an anaphylactic reaction, but it was hard. I hope everyone here who have infections improve.

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Yes... UTIs.

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Mar 9Liked by Gavin Giovannoni

Yes, I was started on Mayzent after Tysabri had to be discontinued. I suffered endlessly from viral herpes outbreaks, many respiratory infections caused by viruses as well as several bacterial infections of different types including an abscessed tooth I didn't realize I had broken and a couple of bouts of pneumonia, despite having had the vaccine against it. I also had numerous infections like an infected cuticle that wouldn't clear up no matter what I did. The tooth abscess took forever to clear up as well. I was given high dose penicillin for that and my body mounted 0 defense against it. I stopped taking the Mayzent on my own and switched to Aubagio and it has actually been a better medication for me. It has stopped the lesion activity and my latest scans were stable with NEDA in August of 2023! And I am not having these opportunistic infections every time I turn around. I think this drug is under rated to be honest

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author

I have been making this point about teriflunomide for several years; sadly nobody listens.

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Mar 9Liked by Gavin Giovannoni

Currently in the throes of (strongly) suspected whooping cough, whilst on ocrelizumab. 3 weeks in, and it’s really grim.

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Sorry to hear this. It also shows that immunity via childhood vaccination is not life-long.

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Mar 10Liked by Gavin Giovannoni

Thanks! It seems to be little known (even among GPs) that immunity wears off. I actually think it is more rampant than official figures show based on my kids’ accounts of coughing friends. But it is hard to get past the ‘probably viral’ initial response.

I hope the UKHSA considers a booster programme and doesn’t leave it too late. I wouldn’t wish this on my worst enemy, it is definitely not mild in grown ups. I don’t know whether the ocrelizumab means I’ve been hit harder - the guidance suggests immunosuppression isn’t a risk factor, but without it being based on v many actual case studies/evidence.

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Jun 9Liked by Gavin Giovannoni

I had whooping cough as a young (immunised) teen and it ruined me for a year. I can’t imagine it immunocompromised. Brutal. Can we get boosters in the UK?

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author

Immunisation against pertussis is not recommended for children over the age of 10 or adults in the UK (Green Book) but in many countries, including Australia, USA and Canada, a booster dose in adolescence is part of the national vaccination schedule.

There is no monovalent pertussis vaccine available in the UK. There is a combined vaccine (diphtheria, tetanus, pertussis, polio – dTap-IPV) licensed for children/adolescents/adults in the UK. This vaccine however, has been procured by the NHS solely for the purpose of the pregnant women programme and is not available for adults in general.

So at the moment if you want a pertussis booster you would have to have the combined vaccine and you would need to pay to have it privately.

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Thank you so much.

I’m low JC+ on Tysabri and considering a move to an anti-cd20, so I’m trying to take as many vaccines/boosters I can.

Are there other useful vaccines available to patients before starting immunosuppreive DMTs? HPV, Shingrix, the autumn Covid jab, are there other (safe on Natalizumab) vaccines people should/could take? I am happy to pay for them, but the team here just shrug when I ask. I wish I’d taken a yellow fever jab when it was an option for me, but I didn’t know.

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Mar 9Liked by Gavin Giovannoni

Yes, I’ve had herpes on my right eye 2 times. UTIs are very frequent. And best for the last, pneumonia caused by covid really did a number on me. I’ve been on B cell depleators since 2018

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author

This shows you the potential downside of long-term B-cell depletion.

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Thank you. I’ve been saying this for 2 years (since I survived the pneumonia). But no one listened until now. Now I’m taking break from Ocrevus for the tme being

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Mar 9Liked by Gavin Giovannoni

Hi Belma, I hope the tamulosin is still working for you…sounds like you’ve been through too much. 🌷

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Mar 10Liked by Gavin Giovannoni

I'm sorry you've experienced pneumonia caused by covid too. First time I've ever had covid (second week of January) and despite antivirals, I went onto develop pneumonia. It's been horrible. I do hope you have recovered as well as possible.

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Thank you for your kind words. It was pretty rough, I’ve had antibiotics for 45 days, and no doctor took me seriously at first. I’ve recovered from pneumonia thank God, but then my MS started going wild… been progressing downhill ever since, from edss 1 to 4 (currently)

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Mar 9Liked by Gavin Giovannoni

Curious about your thoughts on untreated Lyme infection detected after beginning immunosuppressive therapy

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Mar 9Liked by Gavin Giovannoni

Myself I'm quite curious about having found lyme antibodies and B. Burgdorferi antibodies after a virus panel was done. I've been tested for.lyme on a proper lyme test but the levels were lower than would cause a positive rest. Chronic lyme likely doesn't show levels as high as a new infection.

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I wouldn't put any weight on the results. Low tire positive is common and probably relates to the sensitivity of the test. In addition, the test results have to be interpreted in the context of the clinical presentation. As I have said above the clinical manifestations of Lyme disease and MS are different.

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Wondering if you might put some weight on gut issues. Just did a GI mapping test, no detectable akkermansia, high steatocrit, low elastase-1, low secretary IgA. Serum tests show IGG is low as is IGG1

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That's the interesting part, I live in a lyme endemic area and do show antibodies. Despite having spinal cord lesions my neurologist has actually asked me if I think I have MS. I get occasional peripheral neuropathy and have had tinnitus for many years, I really do have a lot of crossover symptoms.

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author

The evidence that Lyme disease causes a chronic infection is quite weak. All that serological tests detect is exposure and don't tell you about active infection. For example, in endemic Lyme areas a large proportion of people will be seropositive with no prior history of Lyme disease. This rarely causes problems. CNS Lyme disease (meningo-radiculitis) is very different to MS; provided a good history, examination and spinal fluid analysis is done Lyme can be differentiated from MS.

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Mar 10Liked by Gavin Giovannoni

Regular UTIs due to ISC but have recently experienced pseudomonas aeruginosa ear infection which wouldn't clear no matter how many antibiotics were thrown at it and then covid in January for the first time and subsequent pneumonia. Wouldn't wish it on anyone.

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I had pseudomonas as UTI in December, oh God the pain, and it was resistant to everything except Ciprofloxacin and Norfloxacin. This last UTI worsened my walk big time.

I hope you are feeling better with pneumonia. It took 40 days of different antibiotics, including 14 days of IV antibiotics, fo finally see improvement.

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Mar 9Liked by Gavin Giovannoni

Heeey :-) unfortunately, after doing urodinamycs exam, doctor suggested intermittent self cath as the only option, tamulosin doesn’t help. I’m not yet mentally prepared to try that. My sister in law is a nurse and she says she’ll practice with me…

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I have had voiding problems for, 10 years? Self cath has been mentioned as an alternative, but my understanding is that, that is where the bacteria comes from, with UTIs given self cath. So I'm not big on the idea. I'm planning for a "roto-router" job later this year. My father had one and it helped a lot (we both had BPI). I still void, but also retain. Don't know if there is a comperable treatment for women. I post here to remind you of the potential infection risk with UTI, that the urologist may not have considered very much as she doesn't deal with MS much. Look it up, but I believe that is one of those "end stage" deals that can get you. Good luck with all this.

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Thank you. I live in Bosnia, and all options here are very limited. The only solution is self-cath. I plan on visiting urologist abroad (Slovenia, Austria...) and see if there are any advanced options (which I will have to pay of course). I read that you can implant a chip in your S-spine, and it controls the bladder. I don't know if that's the same thing you mentioned. Anyway, we gotta fight. Giving up is not an option

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No, not the same. The proceedure is for men, and involves drilling out a larger hole, as painful as that sounds, but they do it while you're asleep. (roto-router is a plumbing term.) It's a common proceedure with Benign Prostrate H..(something). But when you have MS, neurologic bladder, BPH, it becomes difficult for them to know what is going on, as in "the one thing", because it's more than one thing. The electronic stimulation device sounds like something I'd try. I don't want to scare you with the "end statge" stuff, but I know even here in the US the urologists don't give much thought to MS, and I had to bring to his attention the UTI risk of self cath and the potential risks of that for people with MS (which he was unaware of). If you are still peeing, but have retention, it may not be as big of a deal as UTI risk, that's up to you. This is a nasty subject, so again, good luck. Bosnia, wow, it's hard to believe I've connected to Bosnia!

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I'm still peeing but have retention (the last exam showed around 150 ml of residue). That is a lot, and I have frequent UTIs as a result :( thanks for the detailed explanation, I am open to anything which will *really* help me to be UTI-free. As I said, I will have to go abroad, but as long as I find someone who will help me I will do anything. Here is a link about the stimulation thingie, I really really hope someone in Europe does this :-)

https://www.youtube.com/watch?v=sA6CzvnkY7E

PS

It's crazy how we pwMS connect on global level, accross continents, and it's great to speak to someone who lives fo far and often you will hear something useful :-) Take care

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:-) Good luck with everything. Also, a disposable adult diaper is a great way to not have to worry about emergencies. Changed my life with no meds. I didn't know that bacteria is naturally occurring in Urine (I was just reading). Lot of info there, I assume you have seen it. Good luck again.

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Mar 9Liked by Gavin Giovannoni

I finally got Covid for the first time, though the variant going around in December was infectious enough that I don't really blame the Mavenclad. I'm very careful (n95s etc); I almost certainly got it from the "colds" all the staff at the neurology center had, or possibly one of the bus trips to my other appointments. Nosocomial infections are so disheartening! Fortunately the Covid was fine and seems to have had no lingering effect.

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Mar 9Liked by Gavin Giovannoni

I’ve been on Siponimod since Aug 21 & had a series of dental infections that have taken several course of antibiotics to shift. It got so bad that I stopped Siponimod in Dec 23. I’m awaiting results of an MRI scan before restarting. I’m not convinced it’s done much for my MS to be honest.

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Mar 10Liked by Gavin Giovannoni

Yes post Alemtuzumab I developed a bacterial infection under the skin tissue and above muscle tissue, in my leg. It was super painful, swollen and not small. I also developed a viral infection (one you mentioned in your list above). I had total WBC @1.5 for 3.5 years and was not put on any prophylactics to prevent infection.

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Mar 10Liked by Gavin Giovannoni

How long would it take patients (say on average) to have their immune system fully reconstituted post their last round of alemtuzumab?

Is there a specific biomarker that would indicate when immunity is back to pre-treatment baseline?

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I've had 2 UTI's (one right now actually), Covid, pneumonia and a tooth infection since starting Kesimpta in August 2023. It hasn't even been a full 7 months of being on this and I'm collecting all the infections, just like Pokemon. I don't know if it's just a coincidence or caused by Kesimpta.

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I see in comments that, sadly, there are many of us battling infections. And I thought I was the only one with these problems, as other pwMS in my environment don't have frequent UTIs, they recovered from covid in no time, etc...

I always have a stash of antibiotics at home and when UTI kicks in, I take them. I know it would be better to do urine cultures before, but hey, when you are urinating blood, you gotta help yourself...

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Immunosuppressive therapy is not a good idea for the long term... we need something better, and we need it yesterday! I'm not a doctor, or a professor, but after all the years of reading and learning about multiple sclerosis, I believe that going after the immune cells is useless if no one understands WHY the cells are attacking, and what exactly they are going after.

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I one hundred percent agree with this! Going after the immune cells is useless if we don't know what we're going after. Especially as we are just going to be constantly battling infections. I've had 2 UTI's (one right now actually), Covid, pneumonia and a tooth infection since starting Kesimpta in August 2023. It hasn't even been a full 7 months of being on this and I'm collecting all the infections, just like Pokemon. I was supposed to have a 3 month check in with my neuro after starting Kespimpta, but I don't have an appointment yet, and the office won't return my calls lol. I turned 57 yesterday and I feel it's time to just live my life with whatever is left of it, and get off all these toxic meds. My quality of life is garbage!

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deletedMar 9
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How long do you continue them for? And what about resistance, etc. Saying this we do cover people with MS treated with alemtuzumab with antivirals and antibiotics for ~6 weeks with each course. The target here is herpes viruses and listeria.

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Mar 10Liked by Gavin Giovannoni

When to stop……for me, when I see my WBC counts (lymphocytes specifically) grow back to a safe level AND when I feel comfortable stopping the anti-viral. What is the downside to having a protective layer of anti-virals?

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