Cladribine is a selective immune reconstitution therapy (IRT) and is the only IRT on the WHO List of Essential Medicines for treating multiple sclerosis.
Email comment: "I am extremely impressed by this. The level of detail is really high but still understandable, and this is something that is hard to find anywhere. I am a GP and would have loved to have this level of detail when making a decision about medications last November when I had a severe spinal cord relapse. I am wondering if you have a similar set of information about Ofatumamab?"
This is so great and thorough, I would have loved this when cladribine was proposed for me. I did my first two years, then needed to take a third year/set of doses in January 2022, and I have not looked back. I cannot tell you how “good” I’ve felt in the last 6 months, almost “normal”. I still have all my usual symptoms, but nothing worse. Reading about the mechanism of how it works, and details on its efficacy are so reassuring. You are changing the future of MS Dr Giovannoni, thank you.
Email response: "What a great synopsis. Unfortunately it just reinforces why I'd like to be on cladribine despite being diagnosed with PPMS. I've not experienced much if any disability. My new neurologist almost wanted to call it CIS to be honest so I'd rather hit it hard now before I have disability. I'd even pay out of pocket if need be, that's how strongly I feel about it."
Thank you for all of this information. It gives me some confidence that I am on the right track for me. I am 1.5 years after two courses of cladribine/Mavenclad. I am feeling pretty good. I had a meeting with my neuro yesterday and he explained that while we don’t know how long my results will last, we won’t start a new DMT just because time has passed. He did not have a clear answer on why some people start a new DMT without symptom progression. He told me that I could not be treated with cladribine again in the future (not sure if this is because I am in the US) But, no new lesions as of my MRI this month and my gait has improved.
Regarding side-effects, I feel I was definitely more fatigued in the 12 months following each dose. Maybe it was related to immunosuppression fatigue, but that still means its related to the cladribine. Insomnia also crept in, but mainly increased fatigue, which for PwMS is already quite a factor. Worth noting as far as I'm concerned.
Regarding the 14 topics listed for the microsite it reads to me as if only the last one regarding parenthood and pregnancy is about life-style. I would like to see other sections covering life-long topics eg: initiating relationships and sex; also for example: late onset MS/ageing
There should also be a section aimed at parents of children diagnosed with MS.
Realy good Informations. Thank you! Would you choose Cladribin vs. B cell depleating Agent for every Patient ?my neuro offers Both And i Can Not decide, Thanks for your Support!
I truly appreciate the ease of understanding the drug, how it works, pros, cons, etc. A huge wow and one I needed right now. The age range on the study(s) particularly gives me hope. I have compromised immunity due to previous high doses of chemo (which, yes gave me years of remission). Cladribine seems safer in general considering my age. Question: In the event of derisking, (if that would be the correct term) and potentially having a significant dip of WBCs, is G-CSF ever used? I don’t know if that makes sense, but it occurred to me from cancer experience. In the past six months, I’ve had never ending UTIs which are increasing. New urologist recommends totally backing off catheters. If that works, cladribine is what my neurologist and I had previously discussed. Her theory is that with the worsening UTI situation, I never get out of a “relapsed” state, even though I am older and neida. You are much appreciated and give me reason to be hopeful. Yes! 🌷
Prof. Giovannoni, what do you think are the most promising new treatments in the future coming for ms? Do you think it will be the new T-CELL therapy that has been used on lupus? Or do you think Cladribine or Frexalimab would do the difference? Would love to hear from you!
Thank you Prof G, you’ve managed to cover all the questions and information a patient would need to be aware of and certainly helpful to anyone to support their decision about starting Cladribine. The only stumbling block from a lot of patients point of view, is if they would qualify for the drug under their current healthcare provider. Although, shared decision making is crucial, it can be often difficult, due to the qualifying rules for the medication(s).
When you are newly diagnosed - why start off, unless patient choice, with a therapy which is not as effective . Why not start off with the best (or one of) stop the disease potentially progressing.
For the 10+ year follow up am I reading this wrong but I thought based on the data that the total number of those who went the distance with no further DMT was quite small
“ The analysis focused on the long-term outcomes of 435 CLASSIC-MS patients, ages 32-79, who previously participated in CLARITY with or without enrolling in the extension study. All eligible CLASSIC-MS participants had received at least one course of Mavenclad tablets or a placebo in the previous studies.
A total of 394 (90.6%) patients were previously treated with Mavenclad and 160 of them completed the two-year regimen”
“ Over the 10.9-year median follow-up, more than half (53.1%) of the CLASSIC-MS patients didn’t further use DMTs”
Doesn’t that mean only 20% went the 10+ years with no further dmt?
394 in trial , 160 completed the 2 years and 50% of those didn’t need further DMTs.
Please can I contact you about a query regarding a possible long term adverse event with cladribine? I did ask a yellow card to be sent but not sure if they did.
I JUST went looking for this because I was considering asking about re-dosing cladribine in the paid-subscriber Q&A and didn't want to ask something that had already been answered. Thank you!
Email comment: "I am extremely impressed by this. The level of detail is really high but still understandable, and this is something that is hard to find anywhere. I am a GP and would have loved to have this level of detail when making a decision about medications last November when I had a severe spinal cord relapse. I am wondering if you have a similar set of information about Ofatumamab?"
This is so great and thorough, I would have loved this when cladribine was proposed for me. I did my first two years, then needed to take a third year/set of doses in January 2022, and I have not looked back. I cannot tell you how “good” I’ve felt in the last 6 months, almost “normal”. I still have all my usual symptoms, but nothing worse. Reading about the mechanism of how it works, and details on its efficacy are so reassuring. You are changing the future of MS Dr Giovannoni, thank you.
Email response: "What a great synopsis. Unfortunately it just reinforces why I'd like to be on cladribine despite being diagnosed with PPMS. I've not experienced much if any disability. My new neurologist almost wanted to call it CIS to be honest so I'd rather hit it hard now before I have disability. I'd even pay out of pocket if need be, that's how strongly I feel about it."
Thank you for all of this information. It gives me some confidence that I am on the right track for me. I am 1.5 years after two courses of cladribine/Mavenclad. I am feeling pretty good. I had a meeting with my neuro yesterday and he explained that while we don’t know how long my results will last, we won’t start a new DMT just because time has passed. He did not have a clear answer on why some people start a new DMT without symptom progression. He told me that I could not be treated with cladribine again in the future (not sure if this is because I am in the US) But, no new lesions as of my MRI this month and my gait has improved.
Regarding side-effects, I feel I was definitely more fatigued in the 12 months following each dose. Maybe it was related to immunosuppression fatigue, but that still means its related to the cladribine. Insomnia also crept in, but mainly increased fatigue, which for PwMS is already quite a factor. Worth noting as far as I'm concerned.
Regarding the 14 topics listed for the microsite it reads to me as if only the last one regarding parenthood and pregnancy is about life-style. I would like to see other sections covering life-long topics eg: initiating relationships and sex; also for example: late onset MS/ageing
There should also be a section aimed at parents of children diagnosed with MS.
Realy good Informations. Thank you! Would you choose Cladribin vs. B cell depleating Agent for every Patient ?my neuro offers Both And i Can Not decide, Thanks for your Support!
Great information- thank you. Since Cladribine/MAVENCLAD is an IRT with only moderate short-term immunosuppression, is there any rebound effect?
I truly appreciate the ease of understanding the drug, how it works, pros, cons, etc. A huge wow and one I needed right now. The age range on the study(s) particularly gives me hope. I have compromised immunity due to previous high doses of chemo (which, yes gave me years of remission). Cladribine seems safer in general considering my age. Question: In the event of derisking, (if that would be the correct term) and potentially having a significant dip of WBCs, is G-CSF ever used? I don’t know if that makes sense, but it occurred to me from cancer experience. In the past six months, I’ve had never ending UTIs which are increasing. New urologist recommends totally backing off catheters. If that works, cladribine is what my neurologist and I had previously discussed. Her theory is that with the worsening UTI situation, I never get out of a “relapsed” state, even though I am older and neida. You are much appreciated and give me reason to be hopeful. Yes! 🌷
Prof. Giovannoni, what do you think are the most promising new treatments in the future coming for ms? Do you think it will be the new T-CELL therapy that has been used on lupus? Or do you think Cladribine or Frexalimab would do the difference? Would love to hear from you!
Thank you Prof G, you’ve managed to cover all the questions and information a patient would need to be aware of and certainly helpful to anyone to support their decision about starting Cladribine. The only stumbling block from a lot of patients point of view, is if they would qualify for the drug under their current healthcare provider. Although, shared decision making is crucial, it can be often difficult, due to the qualifying rules for the medication(s).
When you are newly diagnosed - why start off, unless patient choice, with a therapy which is not as effective . Why not start off with the best (or one of) stop the disease potentially progressing.
For the 10+ year follow up am I reading this wrong but I thought based on the data that the total number of those who went the distance with no further DMT was quite small
“ The analysis focused on the long-term outcomes of 435 CLASSIC-MS patients, ages 32-79, who previously participated in CLARITY with or without enrolling in the extension study. All eligible CLASSIC-MS participants had received at least one course of Mavenclad tablets or a placebo in the previous studies.
A total of 394 (90.6%) patients were previously treated with Mavenclad and 160 of them completed the two-year regimen”
“ Over the 10.9-year median follow-up, more than half (53.1%) of the CLASSIC-MS patients didn’t further use DMTs”
Doesn’t that mean only 20% went the 10+ years with no further dmt?
394 in trial , 160 completed the 2 years and 50% of those didn’t need further DMTs.
Am I reading this wrong?
https://multiplesclerosisnewstoday.com/news-posts/2023/04/11/mavenclad-benefits-ms-sustained-up-15-years-after-last-treatment/
So interesting but I'm guessing it doesn't work for PPMS?
Please can I contact you about a query regarding a possible long term adverse event with cladribine? I did ask a yellow card to be sent but not sure if they did.
About drug management it is complete
Some questions
-should I change my lifestyle because Multipla Sclerosis?
- there is any recomendatuon about my lifefestyle because or durring immuossupression períod?
Warm regards
Lívia Sousa
I JUST went looking for this because I was considering asking about re-dosing cladribine in the paid-subscriber Q&A and didn't want to ask something that had already been answered. Thank you!