I was really interested to read your most recent case study, particularly with reference to perimenopausal symptoms. What drew my attention in your response was about having irregular periods and that being a definition of whether it’s possible to have HRT – as per the NICE guidelines section 1.2.1 that defines perimenopause/menopause diagnosis. https://www.nice.org.uk/guidance/ng23/chapter/Recommendations#diagnosis-of-perimenopause-and-menopause
From reading around the topic is about changes in periods that may not be just regularity and can be changed in heaviness/lightness, which can be indicative of changes in hormonal levels due to peri/menopause. Also, taking birth control can mask period regularity (I wasn’t sure if the lady was taking hormonal birth control or not) so changes in how heavy/light a period is can be an early sign of hormonal changes.
I found a podcast on recognizing perimenopause in people with existing health conditions and given the overlap in symptoms with MS I wanted to share it with you in case you found it of interest too.
From a personal perspective, being on relatively low-dose HRT has been transformative for me over the last 9 months – in terms of cognitive function, anxiety, sleep etc – all of which were labile in line with the menstrual cycle but have since settled hugely. I’m obviously fortunate to not have MS and have a decent amount of cognitive reserve, but it’s been life-changing to have more settled hormones, improved QoL and hopefully have long-term health benefits too.
I hate to sound evangelical on this, but given perimenopause can start in the mid-30s (menopause range is 40-58, perimenopause symptoms start 4-8 years before menopause) it would be incredibly interesting to know the additive benefit of HRT to DMTs for women with MS (esp on QoL which we know most DMTs struggle to show a significant benefit) and also if asking women about their periods and any menstrual-cycle issues should be a routine part of MS consultations and be on a checklist of some sort.
1.2.1. Diagnose the following without laboratory tests in otherwise healthy women aged over 45 years with menopausal symptoms:
perimenopause based on vasomotor symptoms and irregular periods
menopause in women who have not had a period for at least 12 months and are not using hormonal contraception
menopause based on symptoms in women without a uterus.
1.2.2. Take into account that it can be difficult to diagnose menopause in women who are taking hormonal treatments, for example for the treatment of heavy periods.
1.2.3. Do not use the following laboratory and imaging tests to diagnose perimenopause or menopause in women aged over 45 years:
anti-Müllerian hormone
inhibin A
inhibin B
oestradiol
antral follicle count
ovarian volume.
1.2.4. Do not use a serum follicle-stimulating hormone (FSH) test to diagnose menopause in women using combined oestrogen and progestogen contraception or high-dose progestogen.
1.2.5. Consider using a FSH test to diagnose menopause only:
in women aged 40 to 45 years with menopausal symptoms, including a change in their menstrual cycle
in women aged under 40 years in whom menopause is suspected (see also recommendations on diagnosing and managing premature ovarian insufficiency).
Please note I am simply acting on the information this particular person has given me. I agree like any end-organ failure, which includes the ovaries, the loss of function is gradual and includes an asymptomatic phase, followed by a prodromal phase (symptoms in the presence of apparently normal function, i.e. regular periods), followed by honeymooning in the case of endocrine failure (irregular periods) and finally by failure, i.e. the menopause (loss of periods or ovulation). The problem we have is the evidence supporting treatment of loss of ovarian reserve in the asymptomatic and prodromal phases, which is why NICE guidance doesn't cover this.
I also know that many GPs of family doctors are reluctant to investigate women who are having regular periods. Clearly those who are on hormonal therapies, have a progesterone releasing IUD in situ or have had a hysterectomy are different.
I suspect this woman may fall into one of these categories and will have her ovarian function assessed and if necessary given at trial of HRT. Please note I am a big proponent of HRT in women who have MS. HRT is good for brain, metabolic and bone health and provided there are no contraindications all women should have the option of taking HRT.
Good afternoon! I’ve just read your recent selfie. They are fantastic and your time and effort spent education and supporting the MS community is amazing. I know that personally I’ve hugely appreciated your advice. But as someone who has been a GP for 18 years specialising in Women’s health I have to take issue with your comment that irregular periods are required for a woman to be in the peri menopause. This is absolutely incorrect and many women will continue to have regular cycles despite being symptomatically low in oestrogen. Blood levels of hormones or infrequent periods are not required to start HRT- just typical symptoms and being the right kind of age (over 40) so she ticks all those boxes and sounds highly appropriate for HRT trial to me. Would you consider letting her know? I honestly think regardless of decisions about her MS she would benefit from HRT for many of the symptoms she mentions.
Please note I am simply acting on the information this particular person has given me. I agree like any end-organ failure, which includes the ovaries, the loss of function is gradual and includes an asymptomatic phase, followed by a prodromal phase (symptoms in the presence of apparently normal function, i.e. regular periods), followed by honeymooning in the case of endocrine failure (irregular periods) and finally by failure, i.e. the menopause (loss of periods or ovulation). The problem we have is the evidence supporting treatment of loss of ovarian reserve in the asymptomatic and prodromal phases, which is why NICE guidance doesn't cover this.
I also know that many GPs of family doctors are reluctant to investigate women who are having regular periods. Clearly those who are on hormonal therapies, have a progesterone releasing IUD in situ or have had a hysterectomy are different.
I suspect this woman may fall into one of these categories and will have her ovarian function assessed and if necessary given at trial of HRT. Please note I am a big proponent of HRT in women who have MS. HRT is good for brain, metabolic and bone health and provided there are no contraindications all women should have the option of taking HRT.
I am about to start Siponimod next week , even though I have a EDSS score of 7.5 , but I did have a period of double vision, which qualified me . I’ve never been happy with the lack of any treatment, for those of us who are wheelchair bound, and only having an active right arm and hand left. One reason why I’m so grateful of being included in this treatment, because it just might, might preserve my right hand, as I use it to paint.
Painting has been a life line since I had to retire from being a midwife in 2012 due to disability, and I’ve taken to it obsessively . Recommend to anybody who can and indeed wants to. It
has been crucial for good mental health . I record them on Instagram and I’m up to 509 pictures at last count. It’s really good way to keep track of your progress too. You can find me at Jen-Ferguson- bettebravo - art if your curious.
Like you I paint and agree it's a great thing to do. I'm also going to start Siponimod and it will be the first treatment I've ever been offered. Unfortunately the start has been delayed. I'm going to look at your paintings now 🤩
Thank you for sharing this case. I found it especially interesting as I could have written the initial letter myself! I appreciate the detailed answers to each question. I am interested to learn more about possible benefits of an anti inflammatory diet.
I don't know how easy it is to do, but my first thought was find a new neurologist until you find one who understands you. I learned pretty quickly after my diagnosis 4 years ago at age 50 that I needed to take control of my future, from picking initial DMT, changing DMT when it was appropriate, getting PT and OT, to getting appropriate testing/lab work. MS definitely requires self-advocacy...she sounds like she wants a DMT based on her history of issues, so yes it makes sense to me.
First of all, I apologize: English is not my mother tongue, so I hope you understand me. Thank you for discussing this interesting case study.
I was diagnosed with MS last year, but my first sympoms were in 2000. I was 20 and since then every relapse I had, I was diagnosed with myopia, orthopedical issues, herniated disc, psycological problems, etc. After some time, I was convinced that I was just a bit strange or it was just stress. I lived a very normal life and I too had three children. I breastfed for a very long time according to western standard (pregnancy+3 years brestfeeding+second pregnancy+3 years breastfeeding+third pregnancy+3 years breastfeeding). During my pregnancies+breastfeeding I was quite well and probably had just 1 or 2 relapses in 10 years (but doctors told my symptoms were due to the fact that "having children is a big struggle"...). I thing the majority of my relapses were either before of after pregnancies+breastfeeding, so I think it was for me a kind of "natural DMT". Is it possible? Are there any data about the impact of breastfeeding in women with MS?
I'm now on Aubagio, I'm quite fine, have some balance issues and sometimes experience some weakness on my left arm and on my left eye, but I live normally, I'm working and I try do to my best in terms of diet and physical activity. I know that I have lesions and that damage occurred so I'm worried about the future.
If I had known that I had MS, I'd probably decided not to have children, and I'm am quite angry for not getting a diagnosis before. They didn't take me seriously, this was maybe because I wasn't sick enough according to their standard or I didn't complain enough, or they simply thought that women just complain everytime.
I too was taken seriously and it took nearly 30 years for me to get a diagnosis. In the meantime i was being sent to psychiatrists and pain doctors, along with with being told to try to reduce the stress in my life. Now I have so many lesions in my brain, on my brain stem, and on on my cervical spine, its a wonder i can function at all
Thank you for carefully breaking down the details of this case. I can very much relate to her experience, though I was 42 with 3 children when diagnosed. I had a good neuro who immediately started me on Avonex within 2 -3 years after partial color vision loss in L eye for a day. I commented on this previously that I was advised to do nothing at age 65 when I’d “plateaued”. Things are getting increasingly more difficult and depressing at age 69. Fortunately, I have a new empathic neurologist (who knew?) who very strongly recommends a DMD, regardless of no active lesions, a belief very similar to your smouldering MS. She’s concerned about brainstem issues. I have seen the “mod” type drugs and she gave me some information on siponimod (Mayzent, Novartis) Do you prescribe this drug? I’ve read that if I require another booster, it will have to be prior to starting this therapy. Thanks so much for your time! I so appreciate it. (Btw, I tried online donation, but failed because I’m in the states and I can’t convert to the £. Ideas?)
Yes. we prescribe siponimod in patients with active SPMS. The term active is what is important. In the NHS you have to have had recent relapses and or new MRI lesions in the last 2-3 years to be eligible of siponimod.
The problem with being 69 is that you are outside of the trial population that siponimod was tested in and with immuno-senescence you are more at risk of getting complications from chronic immunosuppression.
Thank you Professor G. Is there a DMD that might be less risky immunosuppressant wise for someone my age? I have some fellow pwMS a bit younger than I on dimethyl fumarate (Tecfidera?) that seem happy with it. Might that be less risky? Many thanks for your expertise in all things MS!
Interferon-beta, GA and teriflunomide are immunomodulatory and not immunosuppressive. DMF is only a very moderate immunosuppressive and when we derisk it, i.e. stop in in pwMS who develop persistent lymphopaenia it is not really associated with opportunistic infections.
Ah! Thank you so very much. Makes perfect sense, and is exactly the information I need. So back to interferon beta, perhaps! I can’t tell you how fortunate I feel to have found your Substack/Selfie. :)
I am 64 and was on Mayzent for 15 months. In the end it tanked my immune system so badly that It has taken nearly a year to recover. I have active SPMS and am still still trying to get back to a base line with my white counts, and even red counts. I am unsure what happened while taking this drug but I ended up being so severly anemic within that time that my primary care doctor was insisting that I was bleeding internally. (I wasn't) It has taken about 9 months to get all of my counts back to within normal limits, altho not normal for me yet. I am about to start on Aubagio because that one doesnt tank the immune system so hard and I think I will be able to handle it better. Going without a DMD is not an option because my disease is very active. I have a high lesion load and new lesions on the brain stem at the last MRI.. It's scary stuff.. Best of luck to you in your journey.
Karen, thank you. I really appreciate your input. I have legacy low blood count issues just barely in the normal range from high dose chemo, which is why I stuck with Avonex for 20 years. (I wish I hadn’t listened to “Oh, you’ve plateaued. Go off your med!” four years ago.) Suppressed counts can be flat terrifying. That’s a very long time you needed to recover. The new doctor I saw also noted signs of brain stem involvement, and my mental processing continues to deteriorate. I tried Aubagio briefly perhaps +/- 7 ? years ago and had gut issues. Perhaps it’s time to look into it again. I’ll be rooting for you and interested to hear how it goes. If only we all reacted similarly to medications!!
from what I understand, and please don't hold me to this but, those that do have gut issues with Aubagio, tend to get past them with some time if you can hang in. IDK how bad your issues were or what they were but I do remember having some slight upset with Tecfidera and I took a half of a dramamine tablet to ease that and I would try to take it with a little something on my stomach. I know these are 2 different meds but if the issue was some light nausea with the Aubagio, then it might be much the same. I know hair loss is a complaint I see often with Aubagio takers and liver issues.. I am hoping for smooth sailing tho because I don't have a lot options that won't tank my immune system.
I just recall being very nauseated on Aubaugio, but the worst was days of diarrhea at the low dose. I think, as you’re saying, my neurologist wanted me to try to power through it, but it was pretty bad, and I went back to Avonex. I’ve had (pre MS diagnosis) “idiopathic gastroparesis” (delayed stomach emptying) forever, which has become a challenge to manage, even with medications. So I wonder if that and IBS got riled up? Speaking of hair loss, I was on ivig infusion for a year, and I swear it wrecked my hair. I’m fairly certain that gamma globulin shots are what I had as a child for an anemia called Thallessemia B, so I had no apprehension. But at my age, the risks outweighed the benefits. Heart arrhythmia, jittery energy and headache. The heart issues drove me nuts. I’m keeping fingers crossed Aubaugio works for you. I don’t know if you mentioned it, but may I ask what happened with Tecfidera?
Thank you Prof G for addressing this interesting case which has many similarities to my own.
I was diagnosed in 2009 after two incidences of peripheral neuropathy. My MRI showed four lesions in my brain and two in my cervical spine. I was offered interferon-beta but as I was so young I chose the "wait and see" approach. That was 13 years ago and I've had no definitive relapse since. My symptoms continue to be mild and after some tweaks to my diet to deal with fatigue and minor bowel issues, I've lived a completely normal life and feel healthier than ever.
My latest MRI showed one new lesion but the overall lesion load since diagnosis was described as "low". My neurologist said my MS is stable, he didn't want to be "paternalistic" and I can do whatever I want - ranging from doing nothing to starting Ocrevus infusions. I've found this quite an overwhelming decision and have had to do a lot of reading to catch up on the massive gaps in my knowledge. Being this far into the disease course with no obvious symptoms certainly complicates matters and having recently started a young family, I'd really like another 30+ years of living without disability.
As it stands I think I'll hedge my bets, start on Tecfidera and see what happens but I'd really appreciate any advice anyone can offer!
Hi Gregor, personally I would go on a DMD. I also had a family and I believe starting on a disease modifier helped me carry on. One thing was, for me, the disability aspect was I believe definitely slowed. 25 years later, I’m certain I was in a much better place had I done nothing. And there are so many more treatments out there now. I’d say pick one and give it a go! Best to you and your family! Cheers!
From experience, and 3 decades of delay in being diagnosed, I can say that if you are already showing new lesions, you should absolutely consider a DMT. I was showing symptoms for many years, on and off, relapses I guess, and sometimes they were bad. like I said 3 decades of doctors telling me that I was being overly dramatic, that I was imagining things, that there was nothing wrong with me. Until there was. I was diagnosed in 2015 but started showing symptoms in 1987, shortly after my daughter was born. By the time i was diagnosed I had over 100 lesions in my brain and 2 on my brain stem. Now, I have almost 150 in my brain, 6 on my brain stem and 7 on my cervical spine. I am due for MRI's the end of this month so those numbers will likely change. If you have a chance to slow the progression of the disease down, why not take it?
I'm so sorry to hear of your experience, it's truly shameful how many people (especially women) are just not taken seriously. I was diagnosed via post after my original neurologist kept cancelling appointments to go on holiday. When I asked to be seen by another neurologist I was treated as a major inconvenience and he couldn't get me out the door quick enough. I was 23 years old and absolutely terrified. Still that pales in comparison to your experience - being ignored is one thing, being told your symptoms are psychosomatic and denied treatment is something else.
I have a mate from school who was diagnosed at a similar time to me and has had a similarly benign disease course without DMT. He is a scaffolder and by his own admission has no chance of understanding the intricacies of MS. We joke we can't even pronounce the names of the drugs we are offered. Like me it's been put to him repeatedly that doing nothing is a completely valid strategy and if he chooses treatment it is up to him to make the decision on which of the many DMTs to go on. The more I read the more baffling I find it that this is considered an acceptable level of care.
It's so helpful to have resources like this site to learn from, they certainly didn't exist when I was diagnosed. Thank you and Italien for sharing your experiences, I've absolutely taken your advice on board and feel much more confident taking responsibility for what happens next.
Prof, you mention Sizomus and its potential to target expanding lesions as well as those in the grey matter but are these known to be present in all MS patients. I am wondering whether there are MRI or other available markers to identify which patients may benefit more than others?
I’d also be interested in the details of the SIZOMUS trial. I have secondary progressive MS and I am considering AHSCT on a private basis. Could this trial and/or others (#Ohand or #chariot MS)be effective /less drastic options?
Thank you , Dr. G.! Very interesting, insightful and helpful! Have you written anything on preserving or restoring physical and cognitive reserve?
Also, would love to hear your thoughts on mindset. For PWMS, what is the optimal mindset to have for restoration and healing?
Finally, what should we think of Dr. Siray Stancic? Can we learn anything from her MS journey. Thank you! I do encourage you to connect with Dr. Jennifer Graves it UCSD Health. You two have a lot in common.
What an interesting analysis. Thankyou both. On hrt issue, have just made an effort to optimise hormone profile, updating prescriptions. Being informed and making best of what we’ve got alongside MS seems sensible.
Email:
I was really interested to read your most recent case study, particularly with reference to perimenopausal symptoms. What drew my attention in your response was about having irregular periods and that being a definition of whether it’s possible to have HRT – as per the NICE guidelines section 1.2.1 that defines perimenopause/menopause diagnosis. https://www.nice.org.uk/guidance/ng23/chapter/Recommendations#diagnosis-of-perimenopause-and-menopause
From reading around the topic is about changes in periods that may not be just regularity and can be changed in heaviness/lightness, which can be indicative of changes in hormonal levels due to peri/menopause. Also, taking birth control can mask period regularity (I wasn’t sure if the lady was taking hormonal birth control or not) so changes in how heavy/light a period is can be an early sign of hormonal changes.
I found a podcast on recognizing perimenopause in people with existing health conditions and given the overlap in symptoms with MS I wanted to share it with you in case you found it of interest too.
https://www.nhmenopausesociety.org/resources/podcast-episode-6-recognising-the-perimenopause-and-menopause-in-patients-with-existing-health-conditions-with-dr-sarah-ball/
From a personal perspective, being on relatively low-dose HRT has been transformative for me over the last 9 months – in terms of cognitive function, anxiety, sleep etc – all of which were labile in line with the menstrual cycle but have since settled hugely. I’m obviously fortunate to not have MS and have a decent amount of cognitive reserve, but it’s been life-changing to have more settled hormones, improved QoL and hopefully have long-term health benefits too.
I hate to sound evangelical on this, but given perimenopause can start in the mid-30s (menopause range is 40-58, perimenopause symptoms start 4-8 years before menopause) it would be incredibly interesting to know the additive benefit of HRT to DMTs for women with MS (esp on QoL which we know most DMTs struggle to show a significant benefit) and also if asking women about their periods and any menstrual-cycle issues should be a routine part of MS consultations and be on a checklist of some sort.
NICE Guidance
https://www.nice.org.uk/guidance/ng23/chapter/Recommendations#diagnosis-of-perimenopause-and-menopause
1.2 Diagnosis of perimenopause and menopause
1.2.1. Diagnose the following without laboratory tests in otherwise healthy women aged over 45 years with menopausal symptoms:
perimenopause based on vasomotor symptoms and irregular periods
menopause in women who have not had a period for at least 12 months and are not using hormonal contraception
menopause based on symptoms in women without a uterus.
1.2.2. Take into account that it can be difficult to diagnose menopause in women who are taking hormonal treatments, for example for the treatment of heavy periods.
1.2.3. Do not use the following laboratory and imaging tests to diagnose perimenopause or menopause in women aged over 45 years:
anti-Müllerian hormone
inhibin A
inhibin B
oestradiol
antral follicle count
ovarian volume.
1.2.4. Do not use a serum follicle-stimulating hormone (FSH) test to diagnose menopause in women using combined oestrogen and progestogen contraception or high-dose progestogen.
1.2.5. Consider using a FSH test to diagnose menopause only:
in women aged 40 to 45 years with menopausal symptoms, including a change in their menstrual cycle
in women aged under 40 years in whom menopause is suspected (see also recommendations on diagnosing and managing premature ovarian insufficiency).
Please note I am simply acting on the information this particular person has given me. I agree like any end-organ failure, which includes the ovaries, the loss of function is gradual and includes an asymptomatic phase, followed by a prodromal phase (symptoms in the presence of apparently normal function, i.e. regular periods), followed by honeymooning in the case of endocrine failure (irregular periods) and finally by failure, i.e. the menopause (loss of periods or ovulation). The problem we have is the evidence supporting treatment of loss of ovarian reserve in the asymptomatic and prodromal phases, which is why NICE guidance doesn't cover this.
I also know that many GPs of family doctors are reluctant to investigate women who are having regular periods. Clearly those who are on hormonal therapies, have a progesterone releasing IUD in situ or have had a hysterectomy are different.
I suspect this woman may fall into one of these categories and will have her ovarian function assessed and if necessary given at trial of HRT. Please note I am a big proponent of HRT in women who have MS. HRT is good for brain, metabolic and bone health and provided there are no contraindications all women should have the option of taking HRT.
Twitter DM:
Good afternoon! I’ve just read your recent selfie. They are fantastic and your time and effort spent education and supporting the MS community is amazing. I know that personally I’ve hugely appreciated your advice. But as someone who has been a GP for 18 years specialising in Women’s health I have to take issue with your comment that irregular periods are required for a woman to be in the peri menopause. This is absolutely incorrect and many women will continue to have regular cycles despite being symptomatically low in oestrogen. Blood levels of hormones or infrequent periods are not required to start HRT- just typical symptoms and being the right kind of age (over 40) so she ticks all those boxes and sounds highly appropriate for HRT trial to me. Would you consider letting her know? I honestly think regardless of decisions about her MS she would benefit from HRT for many of the symptoms she mentions.
Please note I am simply acting on the information this particular person has given me. I agree like any end-organ failure, which includes the ovaries, the loss of function is gradual and includes an asymptomatic phase, followed by a prodromal phase (symptoms in the presence of apparently normal function, i.e. regular periods), followed by honeymooning in the case of endocrine failure (irregular periods) and finally by failure, i.e. the menopause (loss of periods or ovulation). The problem we have is the evidence supporting treatment of loss of ovarian reserve in the asymptomatic and prodromal phases, which is why NICE guidance doesn't cover this.
I also know that many GPs of family doctors are reluctant to investigate women who are having regular periods. Clearly those who are on hormonal therapies, have a progesterone releasing IUD in situ or have had a hysterectomy are different.
I suspect this woman may fall into one of these categories and will have her ovarian function assessed and if necessary given at trial of HRT. Please note I am a big proponent of HRT in women who have MS. HRT is good for brain, metabolic and bone health and provided there are no contraindications all women should have the option of taking HRT.
I am about to start Siponimod next week , even though I have a EDSS score of 7.5 , but I did have a period of double vision, which qualified me . I’ve never been happy with the lack of any treatment, for those of us who are wheelchair bound, and only having an active right arm and hand left. One reason why I’m so grateful of being included in this treatment, because it just might, might preserve my right hand, as I use it to paint.
Painting has been a life line since I had to retire from being a midwife in 2012 due to disability, and I’ve taken to it obsessively . Recommend to anybody who can and indeed wants to. It
has been crucial for good mental health . I record them on Instagram and I’m up to 509 pictures at last count. It’s really good way to keep track of your progress too. You can find me at Jen-Ferguson- bettebravo - art if your curious.
Like you I paint and agree it's a great thing to do. I'm also going to start Siponimod and it will be the first treatment I've ever been offered. Unfortunately the start has been delayed. I'm going to look at your paintings now 🤩
Thank you for sharing this case. I found it especially interesting as I could have written the initial letter myself! I appreciate the detailed answers to each question. I am interested to learn more about possible benefits of an anti inflammatory diet.
I don't know how easy it is to do, but my first thought was find a new neurologist until you find one who understands you. I learned pretty quickly after my diagnosis 4 years ago at age 50 that I needed to take control of my future, from picking initial DMT, changing DMT when it was appropriate, getting PT and OT, to getting appropriate testing/lab work. MS definitely requires self-advocacy...she sounds like she wants a DMT based on her history of issues, so yes it makes sense to me.
First of all, I apologize: English is not my mother tongue, so I hope you understand me. Thank you for discussing this interesting case study.
I was diagnosed with MS last year, but my first sympoms were in 2000. I was 20 and since then every relapse I had, I was diagnosed with myopia, orthopedical issues, herniated disc, psycological problems, etc. After some time, I was convinced that I was just a bit strange or it was just stress. I lived a very normal life and I too had three children. I breastfed for a very long time according to western standard (pregnancy+3 years brestfeeding+second pregnancy+3 years breastfeeding+third pregnancy+3 years breastfeeding). During my pregnancies+breastfeeding I was quite well and probably had just 1 or 2 relapses in 10 years (but doctors told my symptoms were due to the fact that "having children is a big struggle"...). I thing the majority of my relapses were either before of after pregnancies+breastfeeding, so I think it was for me a kind of "natural DMT". Is it possible? Are there any data about the impact of breastfeeding in women with MS?
I'm now on Aubagio, I'm quite fine, have some balance issues and sometimes experience some weakness on my left arm and on my left eye, but I live normally, I'm working and I try do to my best in terms of diet and physical activity. I know that I have lesions and that damage occurred so I'm worried about the future.
If I had known that I had MS, I'd probably decided not to have children, and I'm am quite angry for not getting a diagnosis before. They didn't take me seriously, this was maybe because I wasn't sick enough according to their standard or I didn't complain enough, or they simply thought that women just complain everytime.
I too was taken seriously and it took nearly 30 years for me to get a diagnosis. In the meantime i was being sent to psychiatrists and pain doctors, along with with being told to try to reduce the stress in my life. Now I have so many lesions in my brain, on my brain stem, and on on my cervical spine, its a wonder i can function at all
Thank you for carefully breaking down the details of this case. I can very much relate to her experience, though I was 42 with 3 children when diagnosed. I had a good neuro who immediately started me on Avonex within 2 -3 years after partial color vision loss in L eye for a day. I commented on this previously that I was advised to do nothing at age 65 when I’d “plateaued”. Things are getting increasingly more difficult and depressing at age 69. Fortunately, I have a new empathic neurologist (who knew?) who very strongly recommends a DMD, regardless of no active lesions, a belief very similar to your smouldering MS. She’s concerned about brainstem issues. I have seen the “mod” type drugs and she gave me some information on siponimod (Mayzent, Novartis) Do you prescribe this drug? I’ve read that if I require another booster, it will have to be prior to starting this therapy. Thanks so much for your time! I so appreciate it. (Btw, I tried online donation, but failed because I’m in the states and I can’t convert to the £. Ideas?)
Yes. we prescribe siponimod in patients with active SPMS. The term active is what is important. In the NHS you have to have had recent relapses and or new MRI lesions in the last 2-3 years to be eligible of siponimod.
The problem with being 69 is that you are outside of the trial population that siponimod was tested in and with immuno-senescence you are more at risk of getting complications from chronic immunosuppression.
Thank you Professor G. Is there a DMD that might be less risky immunosuppressant wise for someone my age? I have some fellow pwMS a bit younger than I on dimethyl fumarate (Tecfidera?) that seem happy with it. Might that be less risky? Many thanks for your expertise in all things MS!
Interferon-beta, GA and teriflunomide are immunomodulatory and not immunosuppressive. DMF is only a very moderate immunosuppressive and when we derisk it, i.e. stop in in pwMS who develop persistent lymphopaenia it is not really associated with opportunistic infections.
Ah! Thank you so very much. Makes perfect sense, and is exactly the information I need. So back to interferon beta, perhaps! I can’t tell you how fortunate I feel to have found your Substack/Selfie. :)
I am 64 and was on Mayzent for 15 months. In the end it tanked my immune system so badly that It has taken nearly a year to recover. I have active SPMS and am still still trying to get back to a base line with my white counts, and even red counts. I am unsure what happened while taking this drug but I ended up being so severly anemic within that time that my primary care doctor was insisting that I was bleeding internally. (I wasn't) It has taken about 9 months to get all of my counts back to within normal limits, altho not normal for me yet. I am about to start on Aubagio because that one doesnt tank the immune system so hard and I think I will be able to handle it better. Going without a DMD is not an option because my disease is very active. I have a high lesion load and new lesions on the brain stem at the last MRI.. It's scary stuff.. Best of luck to you in your journey.
Karen, thank you. I really appreciate your input. I have legacy low blood count issues just barely in the normal range from high dose chemo, which is why I stuck with Avonex for 20 years. (I wish I hadn’t listened to “Oh, you’ve plateaued. Go off your med!” four years ago.) Suppressed counts can be flat terrifying. That’s a very long time you needed to recover. The new doctor I saw also noted signs of brain stem involvement, and my mental processing continues to deteriorate. I tried Aubagio briefly perhaps +/- 7 ? years ago and had gut issues. Perhaps it’s time to look into it again. I’ll be rooting for you and interested to hear how it goes. If only we all reacted similarly to medications!!
from what I understand, and please don't hold me to this but, those that do have gut issues with Aubagio, tend to get past them with some time if you can hang in. IDK how bad your issues were or what they were but I do remember having some slight upset with Tecfidera and I took a half of a dramamine tablet to ease that and I would try to take it with a little something on my stomach. I know these are 2 different meds but if the issue was some light nausea with the Aubagio, then it might be much the same. I know hair loss is a complaint I see often with Aubagio takers and liver issues.. I am hoping for smooth sailing tho because I don't have a lot options that won't tank my immune system.
I just recall being very nauseated on Aubaugio, but the worst was days of diarrhea at the low dose. I think, as you’re saying, my neurologist wanted me to try to power through it, but it was pretty bad, and I went back to Avonex. I’ve had (pre MS diagnosis) “idiopathic gastroparesis” (delayed stomach emptying) forever, which has become a challenge to manage, even with medications. So I wonder if that and IBS got riled up? Speaking of hair loss, I was on ivig infusion for a year, and I swear it wrecked my hair. I’m fairly certain that gamma globulin shots are what I had as a child for an anemia called Thallessemia B, so I had no apprehension. But at my age, the risks outweighed the benefits. Heart arrhythmia, jittery energy and headache. The heart issues drove me nuts. I’m keeping fingers crossed Aubaugio works for you. I don’t know if you mentioned it, but may I ask what happened with Tecfidera?
Thank you Prof G for addressing this interesting case which has many similarities to my own.
I was diagnosed in 2009 after two incidences of peripheral neuropathy. My MRI showed four lesions in my brain and two in my cervical spine. I was offered interferon-beta but as I was so young I chose the "wait and see" approach. That was 13 years ago and I've had no definitive relapse since. My symptoms continue to be mild and after some tweaks to my diet to deal with fatigue and minor bowel issues, I've lived a completely normal life and feel healthier than ever.
My latest MRI showed one new lesion but the overall lesion load since diagnosis was described as "low". My neurologist said my MS is stable, he didn't want to be "paternalistic" and I can do whatever I want - ranging from doing nothing to starting Ocrevus infusions. I've found this quite an overwhelming decision and have had to do a lot of reading to catch up on the massive gaps in my knowledge. Being this far into the disease course with no obvious symptoms certainly complicates matters and having recently started a young family, I'd really like another 30+ years of living without disability.
As it stands I think I'll hedge my bets, start on Tecfidera and see what happens but I'd really appreciate any advice anyone can offer!
Hi Gregor, personally I would go on a DMD. I also had a family and I believe starting on a disease modifier helped me carry on. One thing was, for me, the disability aspect was I believe definitely slowed. 25 years later, I’m certain I was in a much better place had I done nothing. And there are so many more treatments out there now. I’d say pick one and give it a go! Best to you and your family! Cheers!
From experience, and 3 decades of delay in being diagnosed, I can say that if you are already showing new lesions, you should absolutely consider a DMT. I was showing symptoms for many years, on and off, relapses I guess, and sometimes they were bad. like I said 3 decades of doctors telling me that I was being overly dramatic, that I was imagining things, that there was nothing wrong with me. Until there was. I was diagnosed in 2015 but started showing symptoms in 1987, shortly after my daughter was born. By the time i was diagnosed I had over 100 lesions in my brain and 2 on my brain stem. Now, I have almost 150 in my brain, 6 on my brain stem and 7 on my cervical spine. I am due for MRI's the end of this month so those numbers will likely change. If you have a chance to slow the progression of the disease down, why not take it?
Thanks for taking the time to reply Karin.
I'm so sorry to hear of your experience, it's truly shameful how many people (especially women) are just not taken seriously. I was diagnosed via post after my original neurologist kept cancelling appointments to go on holiday. When I asked to be seen by another neurologist I was treated as a major inconvenience and he couldn't get me out the door quick enough. I was 23 years old and absolutely terrified. Still that pales in comparison to your experience - being ignored is one thing, being told your symptoms are psychosomatic and denied treatment is something else.
I have a mate from school who was diagnosed at a similar time to me and has had a similarly benign disease course without DMT. He is a scaffolder and by his own admission has no chance of understanding the intricacies of MS. We joke we can't even pronounce the names of the drugs we are offered. Like me it's been put to him repeatedly that doing nothing is a completely valid strategy and if he chooses treatment it is up to him to make the decision on which of the many DMTs to go on. The more I read the more baffling I find it that this is considered an acceptable level of care.
It's so helpful to have resources like this site to learn from, they certainly didn't exist when I was diagnosed. Thank you and Italien for sharing your experiences, I've absolutely taken your advice on board and feel much more confident taking responsibility for what happens next.
Thank you for answering the questions in detail! Greatful you take the time!
Thanks again for another informative case.
Prof, you mention Sizomus and its potential to target expanding lesions as well as those in the grey matter but are these known to be present in all MS patients. I am wondering whether there are MRI or other available markers to identify which patients may benefit more than others?
https://multiple-sclerosis-research.org/2021/11/advanced-pwms-skills-reading-between-the-lesions/
I’d also be interested in the details of the SIZOMUS trial. I have secondary progressive MS and I am considering AHSCT on a private basis. Could this trial and/or others (#Ohand or #chariot MS)be effective /less drastic options?
Where can I info regarding participating in the the ohand and chariot ms trials? When are the studies due to be completed? Thanks
Thank you , Dr. G.! Very interesting, insightful and helpful! Have you written anything on preserving or restoring physical and cognitive reserve?
Also, would love to hear your thoughts on mindset. For PWMS, what is the optimal mindset to have for restoration and healing?
Finally, what should we think of Dr. Siray Stancic? Can we learn anything from her MS journey. Thank you! I do encourage you to connect with Dr. Jennifer Graves it UCSD Health. You two have a lot in common.
What an interesting analysis. Thankyou both. On hrt issue, have just made an effort to optimise hormone profile, updating prescriptions. Being informed and making best of what we’ve got alongside MS seems sensible.
Very informative, thank you.