Me too. I had my ovaries removed aged 44. Stayed on tablet form HRT until 5 years ago. Now I use gel it’s not so good. I’m ,63. I’m considering asking for it back. I had a battle with GP to stay on it.
Hi, I am too in HRT, and I use gel for the estrogen part. Called Divigel. My doctor finds it more safe for long term use, in comparison to tablets. I just use it for menopausal symptoms, and works fine. I hope that translates to the efficiency for MS related issues. Although I am stably progressing 😔
Looking forward to your findings. All your questions are what I always want to ask my neurologist but obviously never have enough time.
Will they cover anything about the ongoing effects of covid and the vaccinations on people with MS with and without dmts or is no one interested in that anymore?
Thanks again for all of your shared knowledge and thoughts.
As an ex HCP I went to the dark side and worked at a senior level for one of those companies exhibiting at Medical conferences. I was astonished at the freebies offered to the delegates by Big Pharma especially...and I’m not just talking plastic pens. Happily that finished in the UK not long after I started - not entirely sure that’s the case in the US and elsewhere.
I really look forward to your feedback. I’m seeing my MS Consultant following an MRI sometime in November, so I’d love to swamp him with new information.
He may even be there as well, which would be even better! I’m sure he anticipates our meetings with great enthusiasm :). Actually, I think he does as I only ever see him and not the SpR, as would normally be the case.
I'm glad that we'll get to see your lectures. I also appreciate you talking about medical gaslighting. It's a bigger problem than a lot of people realise. I'll be attending the virtual Patient Community Day and hoping to learn a lot.
So much here. I’d be very interested in the lung association. Both my parents smoked a lot until I was about 10. My sister who also had MS was was 14 when they stopped. had whooping cough aged 5. Now I have asthma. Diagnosed late as in my family we had to just get on with things when Ill. I had and still get bad coughing fits when I have viruses. I was told you don’t get asthma when you get older, it would have been there since childhood. Who knows. I was sent to school with whooping cough, and promptly sent home and the Dr was called out. I have a sibling in the middle who has no signs of MS. 🙏
Smoking was common in my parents generation. So if there’s a link you’d think less MS related to smoking now. Smokers are less. I doubt many smoke in pregnancy.
I like question 8. At the moment I’m looking for a gynecologist who is open to helping me to get HRT. It’s challenging. And I would love to see more activity here! Looking forward of course for the rest of your findings. And see you hopefully there! Birgit
That is a very complete list of questions. I’m looking forward to seeing the responses. I’ve never been offered HRT but have heard how it’s been beneficial for some
Woman and their MS.
Here in the USA pharma pays doctors based on their prescribing of DMT’s. I’m not talking about attending a conference and getting a free meal. Pro publica had a site that showed specifics with some getting paid 800k in as little as two years.
It really seems like a conflict of interest and sows the seeds of mistrust. Are they prescribing what is truly in your best interest or theirs.
Thanks for all the great topics and looking forward to hearing about the conference!
I’m wondering what’s new for PPMS research - especially after the Tisch MS Center identified something in the spinal fluid of PPMS patients that is not present in the other types. Could this be a different disease? What’s most promising in forthcoming treatments?
Monday was my birthday. And for the past seven years I have had my birthday in this nursing facility. I keep hoping that there is something soon that can change the course of my disease and disability from MS so that I don't have to spend another birthday here. I know that is highly unlikely due to the severity of my disability, but I keep hoping that the reality of that changes dramatically in a positive way before my reality changes dramatically in a negative way. I know in the interim that any help in raising my current QOL would be very welcome.
Zero discussion about managing and stopping symptoms as usual
Seems like no one is working on how to deal with / stop symptoms.
Remylination will help no doubt but that is the holy grail
I want someone to work on a symptom treatment option without us just being thrown a bunch of drugs that may or may not work. I’ve tried lyrica, Tegretol and zero help.
I think the link between hormones and the immune response in MS would be an interesting point of research, I have experienced a whole host of perimenopausal symptoms since starting kesimpta aged 32 (and I know other women on kesimpta who have experienced similar).
I would like to hear more about HRT in post-menopausal women with MS.
Enjoy the meeting!
Thanks
https://gavingiovannoni.substack.com/p/is-it-ms-or-is-the-menopause
Me too. I had my ovaries removed aged 44. Stayed on tablet form HRT until 5 years ago. Now I use gel it’s not so good. I’m ,63. I’m considering asking for it back. I had a battle with GP to stay on it.
https://gavingiovannoni.substack.com/p/is-it-ms-or-is-the-menopause
How can I find out about the difference between gel and tablets ?are the gels less potent, as in weaker.
Hi, I am too in HRT, and I use gel for the estrogen part. Called Divigel. My doctor finds it more safe for long term use, in comparison to tablets. I just use it for menopausal symptoms, and works fine. I hope that translates to the efficiency for MS related issues. Although I am stably progressing 😔
Same!!
It's a big list and much to discuss. Lots to unpack.
I am interested to understand when and why HRT would be prescribed to post-menopausal women with MS.
Enjoy the conference and looking forward to your updates.
Looking forward to your findings. All your questions are what I always want to ask my neurologist but obviously never have enough time.
Will they cover anything about the ongoing effects of covid and the vaccinations on people with MS with and without dmts or is no one interested in that anymore?
Thanks again for all of your shared knowledge and thoughts.
As an ex HCP I went to the dark side and worked at a senior level for one of those companies exhibiting at Medical conferences. I was astonished at the freebies offered to the delegates by Big Pharma especially...and I’m not just talking plastic pens. Happily that finished in the UK not long after I started - not entirely sure that’s the case in the US and elsewhere.
I really look forward to your feedback. I’m seeing my MS Consultant following an MRI sometime in November, so I’d love to swamp him with new information.
He may even be there as well, which would be even better! I’m sure he anticipates our meetings with great enthusiasm :). Actually, I think he does as I only ever see him and not the SpR, as would normally be the case.
Enjoy the meeting!
I'm glad that we'll get to see your lectures. I also appreciate you talking about medical gaslighting. It's a bigger problem than a lot of people realise. I'll be attending the virtual Patient Community Day and hoping to learn a lot.
I’d be interested to know if there is any research around smouldering MS and brain volume loss.
Also any connections between trauma or childhood ACE’s and the later development of MS.
Many thanks for your continued work.
Best wishes
Fatma
So much here. I’d be very interested in the lung association. Both my parents smoked a lot until I was about 10. My sister who also had MS was was 14 when they stopped. had whooping cough aged 5. Now I have asthma. Diagnosed late as in my family we had to just get on with things when Ill. I had and still get bad coughing fits when I have viruses. I was told you don’t get asthma when you get older, it would have been there since childhood. Who knows. I was sent to school with whooping cough, and promptly sent home and the Dr was called out. I have a sibling in the middle who has no signs of MS. 🙏
Smoking was common in my parents generation. So if there’s a link you’d think less MS related to smoking now. Smokers are less. I doubt many smoke in pregnancy.
I like question 8. At the moment I’m looking for a gynecologist who is open to helping me to get HRT. It’s challenging. And I would love to see more activity here! Looking forward of course for the rest of your findings. And see you hopefully there! Birgit
That is a very complete list of questions. I’m looking forward to seeing the responses. I’ve never been offered HRT but have heard how it’s been beneficial for some
Woman and their MS.
Here in the USA pharma pays doctors based on their prescribing of DMT’s. I’m not talking about attending a conference and getting a free meal. Pro publica had a site that showed specifics with some getting paid 800k in as little as two years.
It really seems like a conflict of interest and sows the seeds of mistrust. Are they prescribing what is truly in your best interest or theirs.
Thanks for all the great topics and looking forward to hearing about the conference!
Sounds great!
I’m wondering what’s new for PPMS research - especially after the Tisch MS Center identified something in the spinal fluid of PPMS patients that is not present in the other types. Could this be a different disease? What’s most promising in forthcoming treatments?
Monday was my birthday. And for the past seven years I have had my birthday in this nursing facility. I keep hoping that there is something soon that can change the course of my disease and disability from MS so that I don't have to spend another birthday here. I know that is highly unlikely due to the severity of my disability, but I keep hoping that the reality of that changes dramatically in a positive way before my reality changes dramatically in a negative way. I know in the interim that any help in raising my current QOL would be very welcome.
Zero discussion about managing and stopping symptoms as usual
Seems like no one is working on how to deal with / stop symptoms.
Remylination will help no doubt but that is the holy grail
I want someone to work on a symptom treatment option without us just being thrown a bunch of drugs that may or may not work. I’ve tried lyrica, Tegretol and zero help.
Hi Gavin,
Please can you do a recap on what you went to and also presented yourself. Unfortunately Brett’s Ectrims recap hasn’t covered much at all :-(
I was really hoping to not have to pay a huge amount to watch them back on the Ectrims page.
Hercules press release https://www.sanofi.com/assets/dotcom/pressreleases/2024/2024-09-20-09-30-00-2949552-en.pdf
I think the link between hormones and the immune response in MS would be an interesting point of research, I have experienced a whole host of perimenopausal symptoms since starting kesimpta aged 32 (and I know other women on kesimpta who have experienced similar).