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.
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
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
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.
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…
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.
We test for a few co-infections before starting an immunosuppressive DMT, but that leaves so many unchecked. Why not include low-dose antiviral and/or antibacterial therapies at the same time? This seems like an easy, low-risk preventive solution.
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.
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.
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.
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.
Sadly yes, which a simple Shingles vaccine at the start of Ocrelizumab may have prevented, had I been told of it.
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.
Yes... UTIs.
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
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
Curious about your thoughts on untreated Lyme infection detected after beginning immunosuppressive therapy
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.
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…
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.
We test for a few co-infections before starting an immunosuppressive DMT, but that leaves so many unchecked. Why not include low-dose antiviral and/or antibacterial therapies at the same time? This seems like an easy, low-risk preventive solution.
Currently in the throes of (strongly) suspected whooping cough, whilst on ocrelizumab. 3 weeks in, and it’s really grim.
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.
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.
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?
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.
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.