I breastfed through round 3. I was advised not to for 4 months by the neurology team but the breastfeeding network specialist pharmacists suggested adjustment to the antihistamine and advised that the others wouldn’t pass into milk. I think there should be a more balanced discussion about breastfeeding as I know from forums this puts patients off.
I think the thyroid issues need to be really spelt out to women of childbearing age - my tsh has been unstable for over 3 years and I had a high risk pregnancy because of it and the antibodies I was producing. I also can’t have RAI now because of needing to stay away from children. I see FAR more of the endocrinologist than I do of the ms team - I have gone from being very underactive (for over 2 years on up to 225mcg of thyroxine) to overactive. It was presumed my thyroid had burnt itself out but is now overactive. The endocrinologist has presented this at various thyroid meetings as he feels there’s learning into how to manage it for other patients.
I was lucky to have lemtrada first line before that was stopped. I’m told I can’t have a forth round on the nhs so here’s hoping round 3 works. I absolutely don’t regret having it and I’m currently neda a year after round 3
The issue of thyroid dysfunction and pregnancy is very complex and will need a separate MS-Selfie Newsletter to go through all the issues. We have had several women in our centre go through pregnancy post-alemtuzumab with thyroid problems. The endocrine team are very good at managing pregnancy in women with thyroid problems. I personally think this is not necessarily a reason not to have alemtuzumab. But as always it needs to be part of the discussion in women of child-bearing age.
Mine was managed really well but it’s a huge added stress and one that I just wasn’t aware of. I needed foetal medicine scans, weekly Doppler scans, fortnightly bloods, growth scans, an early delivery etc. I really think I should have had more information than ‘36% of patients get thyroid issues which is easily managed with medication’
Extremely grateful to have had Lem as first DMD at start of my MS when 41. I turned 50 this week and hiking around Iceland - thanks to my HCP’s at Barts ❤️ so thank you! I just wanted to understand if I ever needed a third round - does age play a part in the criteria, how would I know if I transition to SPMS and how would activity be promptly identified now that MRI’s are not yearly?
No age shouldn't be an issue when making a decision. Yes, being labelled as SPMS would change things as we only have one DMT licensed for SPMS siponimod.
After having Alemtuzumab, it was necessary to have a cervical smear Pap test every year for 5 years.
I have a couple of questions which concern me.
Not only are smear tests now every 5 years rather than three, they are not a Pap test but instead simply look for HPV.
HPV is responsible for most cancers of cancer but not all and if someone has had a treatment which increases the risk of cervical cancer, should they not be having Pap tests rather than HPV tests?
Also, before Alemtuzumab I had seven courses of Cyclophosphamide.
I do participate in the screening programme and have just had a test but will now not be called for 5 years hence why I wanted your advice.
I am 52 years old and having read the criteria for those most in need of the vaccination, I do not fall into any of those categories.
Having had the treatments I mentioned for my Ms but no longer being on any medication am I at risk of developing cervical cancer even if I do not have HPV?
Obviously neurologists know more about the potential cancer risks of Ms treatments.
"I would appreciate feedback to help the medical writing team when converting the information from the Newsletter to the microsite. "
This is really fantastic. So thorough. Wish all this stuff was around in the early (to me) days. Scary, yes. Got to get over it, unfortunately. I skip around only on a few MS related sites, this one and Bart's for the essentials; the others for entertainment to see how people are dealing with things, new trends that are seeping out, and the bogus nonsense. I sometimes try to refer (delicately) to MS Selfie when people are stuck on something rather pointless (Biotin, for example). Really great work here!
I don’t know how possible is it is to make frightening things less scary and complicated stuff more simple, without loosing the “kick” and respect for truth that is needed. That’s the only comment I could make to a writing team. Don't forget the "toughness" of the material, but keep it coming.
My son (with a RES MS) had disease activity 6 months after course 1, and was still given course 2. He is now 24 years old and since course 2 (a year ago) his MS is in remission. What would you recommend if he has disease activity again? Does another course of Alemtuzumab have advantage over other DMTs with respect to relapses, disability progression, brain volume loss?
I would cross that bridge when you get there. A large minority need a third course, and still do very well. So if you have committed to this treatment strategy I would continue with it. Why change? The only reason we wouldn't give a third course is because if there are anti-drug antibodies.
I agree. Especially given that it had already proved helpful for my son, and that the secondary autoimmunity risk was not found to increase with additional courses. Unfortunately my son's neurologist said in the last appointment that he doesn't believe in giving it for more than 2 courses, given that there are safer alternatives today and because it is a drug that is not used so much anymore. I am assuming he is referring to B-cell depleting agents / S1P receptor modulators, and I feel that I would rather have my son take a greater risk for a short time than be on a continuous immunosuppressive therapy (that might help less with end organ damage).
Regarding Tysabri to Lemtrada move. If not JC positive is an mri all that’s needed to switch?
I have also heard that a lower dose of rituximab might help reduce the chance of secondary autoimmunity?
What can be done to remove that risk. Lemtrada I am strongly considering as an option when I need to move off Tysabri (and had that conversation with my neuro last week which he supported) but the high chance of a thyroid issue or something else does concern me
He did mention that he hasn’t had any patient with something not treatable who was on Lemtrada and the worst part would be the 4 years worth of monthly bloods.
I recently had my second course of Alemtuzumab. I wanted AHSCT, but couldn't get it. Alemtuzumab was fine. I had to be kept in hospital a couple of nights because of how ill it made me, I'm allergic to the antibiotic, and I'm still immunocompromised, but whatever. 🤷♂️ After the decades of trauma the NHS put me through (severely disabled by undiagnosed/untreated MS), it was nothing. 🤕 I was just so utterly relieved to be on treatment. I moved to London for it, it wasn't available where I'm from. So far, I haven't developed any new autoimmune conditions. And I quite enjoyed the steroids. Given my circumstances, and options, it was the right choice for me.
Very interesting. It seems very good so why isn't it offered? I have been on Siponimod for about one year. No side effects apart from low lymphocytes count but it's creeping up. My mobility is better than before I started. I also take Sativex which has stopped nerve pains but not spasms. Should I ask to switch to Alemtuzumab? I'm 62 diagnosed 12 years ago but probably had MS since aged 15 without much symptoms until 12 years ago . I was very fit and still exercise as much as I can now
https://www.nytimes.com/2015/11/15/business/after-merger-two-competing-drugs-and-billion-dollar-questions.html
Sent to me on X
I breastfed through round 3. I was advised not to for 4 months by the neurology team but the breastfeeding network specialist pharmacists suggested adjustment to the antihistamine and advised that the others wouldn’t pass into milk. I think there should be a more balanced discussion about breastfeeding as I know from forums this puts patients off.
I think the thyroid issues need to be really spelt out to women of childbearing age - my tsh has been unstable for over 3 years and I had a high risk pregnancy because of it and the antibodies I was producing. I also can’t have RAI now because of needing to stay away from children. I see FAR more of the endocrinologist than I do of the ms team - I have gone from being very underactive (for over 2 years on up to 225mcg of thyroxine) to overactive. It was presumed my thyroid had burnt itself out but is now overactive. The endocrinologist has presented this at various thyroid meetings as he feels there’s learning into how to manage it for other patients.
I was lucky to have lemtrada first line before that was stopped. I’m told I can’t have a forth round on the nhs so here’s hoping round 3 works. I absolutely don’t regret having it and I’m currently neda a year after round 3
I agree with you regarding breast feeding; the discussion is not black and whit but needs to be more nuanced.
The issue of thyroid dysfunction and pregnancy is very complex and will need a separate MS-Selfie Newsletter to go through all the issues. We have had several women in our centre go through pregnancy post-alemtuzumab with thyroid problems. The endocrine team are very good at managing pregnancy in women with thyroid problems. I personally think this is not necessarily a reason not to have alemtuzumab. But as always it needs to be part of the discussion in women of child-bearing age.
Mine was managed really well but it’s a huge added stress and one that I just wasn’t aware of. I needed foetal medicine scans, weekly Doppler scans, fortnightly bloods, growth scans, an early delivery etc. I really think I should have had more information than ‘36% of patients get thyroid issues which is easily managed with medication’
Thanks, I will add more.
Extremely grateful to have had Lem as first DMD at start of my MS when 41. I turned 50 this week and hiking around Iceland - thanks to my HCP’s at Barts ❤️ so thank you! I just wanted to understand if I ever needed a third round - does age play a part in the criteria, how would I know if I transition to SPMS and how would activity be promptly identified now that MRI’s are not yearly?
No age shouldn't be an issue when making a decision. Yes, being labelled as SPMS would change things as we only have one DMT licensed for SPMS siponimod.
After having Alemtuzumab, it was necessary to have a cervical smear Pap test every year for 5 years.
I have a couple of questions which concern me.
Not only are smear tests now every 5 years rather than three, they are not a Pap test but instead simply look for HPV.
HPV is responsible for most cancers of cancer but not all and if someone has had a treatment which increases the risk of cervical cancer, should they not be having Pap tests rather than HPV tests?
Also, before Alemtuzumab I had seven courses of Cyclophosphamide.
The vast majority of adult-onset cervical cancer are due to HPV. We expect our patients to participate in the NHS cervical screening programme. See:
https://www.nhs.uk/conditions/human-papilloma-virus-hpv/
The old PAP smears are being phased out across the world because they are not as reliable as a screening tool.
Have you had GARDASIL-9 ? If yes, this lowers the risk of cervical cancer by over 90%.
Many thanks for your reply.
I do participate in the screening programme and have just had a test but will now not be called for 5 years hence why I wanted your advice.
I am 52 years old and having read the criteria for those most in need of the vaccination, I do not fall into any of those categories.
Having had the treatments I mentioned for my Ms but no longer being on any medication am I at risk of developing cervical cancer even if I do not have HPV?
Obviously neurologists know more about the potential cancer risks of Ms treatments.
Thanks!
"I would appreciate feedback to help the medical writing team when converting the information from the Newsletter to the microsite. "
This is really fantastic. So thorough. Wish all this stuff was around in the early (to me) days. Scary, yes. Got to get over it, unfortunately. I skip around only on a few MS related sites, this one and Bart's for the essentials; the others for entertainment to see how people are dealing with things, new trends that are seeping out, and the bogus nonsense. I sometimes try to refer (delicately) to MS Selfie when people are stuck on something rather pointless (Biotin, for example). Really great work here!
I don’t know how possible is it is to make frightening things less scary and complicated stuff more simple, without loosing the “kick” and respect for truth that is needed. That’s the only comment I could make to a writing team. Don't forget the "toughness" of the material, but keep it coming.
My son (with a RES MS) had disease activity 6 months after course 1, and was still given course 2. He is now 24 years old and since course 2 (a year ago) his MS is in remission. What would you recommend if he has disease activity again? Does another course of Alemtuzumab have advantage over other DMTs with respect to relapses, disability progression, brain volume loss?
I would cross that bridge when you get there. A large minority need a third course, and still do very well. So if you have committed to this treatment strategy I would continue with it. Why change? The only reason we wouldn't give a third course is because if there are anti-drug antibodies.
I agree. Especially given that it had already proved helpful for my son, and that the secondary autoimmunity risk was not found to increase with additional courses. Unfortunately my son's neurologist said in the last appointment that he doesn't believe in giving it for more than 2 courses, given that there are safer alternatives today and because it is a drug that is not used so much anymore. I am assuming he is referring to B-cell depleting agents / S1P receptor modulators, and I feel that I would rather have my son take a greater risk for a short time than be on a continuous immunosuppressive therapy (that might help less with end organ damage).
Regarding Tysabri to Lemtrada move. If not JC positive is an mri all that’s needed to switch?
I have also heard that a lower dose of rituximab might help reduce the chance of secondary autoimmunity?
What can be done to remove that risk. Lemtrada I am strongly considering as an option when I need to move off Tysabri (and had that conversation with my neuro last week which he supported) but the high chance of a thyroid issue or something else does concern me
He did mention that he hasn’t had any patient with something not treatable who was on Lemtrada and the worst part would be the 4 years worth of monthly bloods.
Regarding rituximab preventing secondary autoimmunity you can read about here:
https://gavingiovannoni.substack.com/p/rituximab-post-alemtuzumab-to-prevent
Regarding switching from natalizumab to alemtuzumab you can read about some of the issues here:
https://gavingiovannoni.substack.com/p/case-study-are-undefined-treatment
Thanks so basically best to switch when JC negative if new activity shows up as there doesn’t seem to be specific monitoring
I’m assuming it’s just an MRI that’s required if Jc negative before switching across.
Yes, that is correct. Please be aware that PML is not the only opportunistic infection and problems associated with natalizumab treatment,
What else would I need to be concerned about when looking to switch over?
I don’t have any issues with timing as fortunately I can switch immediately so lessens risk of rebound disease from discontinuation or tysabri
I recently had my second course of Alemtuzumab. I wanted AHSCT, but couldn't get it. Alemtuzumab was fine. I had to be kept in hospital a couple of nights because of how ill it made me, I'm allergic to the antibiotic, and I'm still immunocompromised, but whatever. 🤷♂️ After the decades of trauma the NHS put me through (severely disabled by undiagnosed/untreated MS), it was nothing. 🤕 I was just so utterly relieved to be on treatment. I moved to London for it, it wasn't available where I'm from. So far, I haven't developed any new autoimmune conditions. And I quite enjoyed the steroids. Given my circumstances, and options, it was the right choice for me.
Very interesting. It seems very good so why isn't it offered? I have been on Siponimod for about one year. No side effects apart from low lymphocytes count but it's creeping up. My mobility is better than before I started. I also take Sativex which has stopped nerve pains but not spasms. Should I ask to switch to Alemtuzumab? I'm 62 diagnosed 12 years ago but probably had MS since aged 15 without much symptoms until 12 years ago . I was very fit and still exercise as much as I can now
https://gavingiovannoni.substack.com/p/refuseniks-2
Unlikely, it seems as if you have SPMS not RES or HARMS.
Thanks. I didn't realise it wasn't for SPMS
For those considering switching from ocrelizumab to alemtuzumab I cover the important issues here:
https://gavingiovannoni.substack.com/p/case-study-switching-from-ocrelizumab
I've just had my first Alemtuzumab infusion. How soon after can I/should I start exercising? Will doing so have adverse or beneficial effects?