Hi. I’m RRMS, HSCT done in 2014 and relapsed in 2018 (probably due to the high stress factor). HSCT done a great job for me. EDSS dropped from 5,5 to 1,5 and I’m still doing well. Although new active liaisons has shown on my three latest MRIs (done every 6 months). What treatment would you recommend in my case? Thanks.
Professor G has mentioned that anticholinergic agents are to be avoided in MS. Would you recommend that MS patients stir completely clear of all anticholinergic agents or the level of the anticholinergic effect matters? Is there any literature regarding which antidepressants tend to work well on MS patients? Thank you beforehand for your reply
Professor G has mentioned that anticholinergic agents are to be avoided in MS. Would you recommend that MS patients stir completely clear of all anticholinergic agents or the level of the anticholinergic effect matters? Is there any literature regarding which antidepressants tend to work well on MS patients? Thank you beforehand for your reply
Re: “Is there any literature regarding which antidepressants tend to work well on MS patients?”
Anti-depressants are like horses for courses, i.e. some work well in some patients and not others. In relation to this question, I would suggest avoiding the so-called tricyclic anti-depressants as they have quite potent anticholinergic effects and are CNS penetrant. We don’t really use the tricyclics for depression anymore because they are so poorly tolerated at antidepressant doses.
If you have pain, which is common in pwMS who are depressed, duloxetine seems to work well.
My GP is strongly advising against using Duloxetine because of horrendous side effects when trying to stop. Recommending Gabapentin but after reading its own side effect profile, I worry it will worsen the longstanding depression. Please do you have any advice on this from your experience with depressed patients using Gabapentin or Pregablin? Thankyou.
Re: “Would you recommend that MS patients stir completely clear of all anticholinergic agents or the level of the anticholinergic effect matters?”
Yes and no! As a general rule, you should try and avoid anticholinergics, particularly the older generation ones that are CNS penetrant and affect cognition. The newer generation ones are much better tolerated and are designed not to cross the blood-brain-barrier. However, these agents still have side effects in the periphery (dryness of the mouth, blurring of vision, constipation, reduced sweating, etc.). There is no harm in taking them for a short period of time to see how you do. The good news is that there is a new class of bladder drug that works on the adrenergic system and does have anticholinergic side effects.
is there any table/ diagram that can be used for patients on DMTs who are considering a switch to another for whatever reason… be it forced (I,e, on tysabri the patient becomes JCV+ with a risky tire level) or due to lifestyle reason (patient doesn’t want to have monthly infusions).
The visual/ chart, allows the patient to see what are options/ generic recommendations to move onto next.
if one does exist, then please could someone post a link?
Hi Profs & MS Community, following a recent shed load of blood tests, I have been given the thumbs up for the treatment ocrelizumab at the end of the month. My lymphocytes were low after a lengthy period on tecfidera. It has taken 15 months for my bloods to show that they have reached a steady ish time to enable me to have the ocrelizumab. I am of course nervous as my MS is daily active with pain, stiffness, spasticity, bathroom & diet problems along with numbness of my right foot. I’m not sure where I am in terms of progression and maybe that is a good thing! I’m told and have read that I also have gum disease (inflamed gums) – so along with tinnitus, burning pain in my neck and head, I feel awful daily & am now taking opoid patches to help me get through the day. I need to also understand how does ocrelizumab work on my immune system and not bring me back to where I was with the tecidera? Am I just buying myself a possible 1 year to 18 mths worth of no further systoms?
I read your article about Ocrevus patients developing Hypogammaglobulinemia.
I am diagnosed with Selective Antibody Disorder and Multiple Sclerosis and using Ocrevus as my DMT. I am prescribed Hizentra to treat the PI.
Does using Immune Globulin increase the risk of incomplete B-cell depletion or create an environment where B cells regenerate more quickly? Before each of my Ocrevus infusions, my B cells are higher than expected even on a 5.5 month dosing schedule (they are incrementally creeping up higher and higher at testing each infusion cycle.
Does the Hizentra raise my B cell count?
Thoughts on the risk/benefit scenario?
Anything else we should be tracking or investigating?
Fatigue/ lassitude in MS occurs often, but is not well understood. One theory is that it might be caused by an immune response.
In your opinion does fatigue completely resolve after successful (IRT)treatment?
Fatigue is one of the main complaints in MS, are there any studies that investigate the cause?
Yeah, i kinda guessed that was the case. One study actually found an increase in axonial degeneration when mice were administered NMN (small study with poor design). Prof David Sinclair is pushing this stuff as an anti-aging drug. However, NAD+ fuels tumour growth. So…….
Isn’t the theory of BBB not leaving lymphocytes to enter the brain becoming obsolete? We have several recent studies reporting that lympocytes do cross BBB in healthy people too, and for a good purpose (of course this is not the case for MS).
And most importantly, B cells again? Boring, with limited effectiveness and without imagination. This is why Pharma would be thrilled with such an idea.
Conclusions: In our cohort, discontinuation of DMT did not seem to influence clinical outcome, equating with the perceived marginal effect of immunomodulation on older stable and/or progressive patients
Vumerity’s $88,000 List Price Not What ‘We Had Hoped,’ National MS Society Says
The National Multiple Sclerosis Society has criticized Biogen for the $88,000 yearly list price it placed on Vumerity (diroximel fumarate), the newly approved oral disease-modifying treatment (DMT) for relapsing multiple sclerosis. That criticism extends to repeated price increases with Tecfidera (dimethyl fumarate), Biogen’s similar oral DMT for relapsing-remitting MS (RRMS)
Intermittent fasting increases longevity in cardiac catheterization patients
In a new study by researchers at the Intermountain Healthcare Heart Institute in Salt Lake City, researchers have found that cardiac catheterization patients who practiced regular intermittent fasting lived longer than patients who don’t. In addition, the study found that patients who practice intermittent fasting are less likely to be diagnosed with heart failure.
As a confimed 16/8 Luis everything you flag up on IF is all very encouraging. However we are still to have any confirmation of which IF model is the most effective or even if it doesn’t matter as long as you do it to some degree. Personally I’ve my fingers crossed that it’s the latter so that 5/2 or 16/8 or whatever mode works as different approaches suit different people.
My question is, does keto has the same benefits to IF? My understanding is that even though both can put body into producing ketones, IF has an advance in cell autophagy. Is that correct?
I was hoping to start reading more about black swans, antiviral research on here. Instead, I have to say that coming on this website gives me the same feeling as going around a museum exhibition of stuffed birds. Interesting, but where is it all going?
The assumption is a virus is driving MS and halofuginone may assist in developing resistance??? I’m pretty certain most people with MS don’t have Dengue Fever.
Researchers have created a compound, that when tested in mice, was able to promote the reconstruction of the myelin sheath surrounding neuronal axons. These findings could pave the way to a new treatment for combating demyelinating conditions such as multiple sclerosis (MS).
The team set out to explore whether it was possible to block the hyaluronidase activity to promote remyelination.
In the most recent study, the team report that the compound S3 (a modified flavonoid) is able to reverse the effects of HA, leading to the remyelination of axons in mice.
The team are now beginning to apply the compound to a rare population of macaque monkeys with a multiple sclerosis-like disease known as Japanese macaque encephalomyelitis. https://www.technologynetworks.com/drug-discovery/news/compound-created-to-help-reconstruct-myelin-in-multiple-sclerosis-323575?hss_channel=fbp-479163965435700&fbclid=IwAR1tKdvuDSjYme6VuB6yKckVPM9lr2q5Ku-XyPutnOFtT5HqJSYFnwMr8hM
God bless the Russians and a good VPN. I got it too 😉.
Louise, thanks for your offer. I may set up a generic email account moving forward so we can exchange papers. You seem to have a wealth of information.
Has there been anything new on glucosamine supplements regarding MS in recent times? I’m wondering, as I am currently taking some to (perhaps) help a meniscus injury.
A research team in Trinity College Dublin has uncovered a critical role for a protein called “PKM2” in the regulation of immune cell types at the heart of multiple inflammatory diseases.
The work identifies PKM2 as a potential therapeutic target for treating a host of diseases mediated by over-active immune cells, such as psoriasis and multiple sclerosis. The findings are reported today in the world’s leading metabolism journal Cell Metabolism – with the chief discovery being that PKM2 is a central ‘on’ switch for these cells.
MS Relief During Pregnancy Tied to Changes in T Cell Types
Many dominant T cell variants decline during pregnancy and reappear afterward, possibly explaining why relapses of the autoimmune disease are less common when women are expecting.
“Pregnancy doesn’t shut down the entire immune system. It just selectively reduces a couple of dozen out of thousands and thousands of clones that are presumably associated with driving this autoimmune immune attack,” says Gold.
I’ve had some DMF-users tell me that they switched to half a dose (some with consent of their neurologist), in order to fight fatigue and/or low lymphocytes. Many were very pleased with the switch, as their lymphocyte count increased and they felt markedly less tired, and their RRMS remained stable. I understand the reluctance to endorse this as a general strategy, but on the other hand, is it not conceivable that for some patients, half the dose is just what they would need? As it is still not well understood how DMF works, let alone on an individual level, where it’s something of a trial-and-error approach… I would be interested to read your thoughts on this.
Hi. I’m RRMS, HSCT done in 2014 and relapsed in 2018 (probably due to the high stress factor). HSCT done a great job for me. EDSS dropped from 5,5 to 1,5 and I’m still doing well. Although new active liaisons has shown on my three latest MRIs (done every 6 months). What treatment would you recommend in my case? Thanks.
This is one for MD2 and anyone else who’d like a profile pic / Avatar for this blog. Register your e-mail and chosen image here:
https://en.gravatar.com/
Finally got round to it!
Now I know what half a mouse looks like
Thought that was strange genitalia for a minute.
Professor G has mentioned that anticholinergic agents are to be avoided in MS. Would you recommend that MS patients stir completely clear of all anticholinergic agents or the level of the anticholinergic effect matters? Is there any literature regarding which antidepressants tend to work well on MS patients? Thank you beforehand for your reply
Professor G has mentioned that anticholinergic agents are to be avoided in MS. Would you recommend that MS patients stir completely clear of all anticholinergic agents or the level of the anticholinergic effect matters? Is there any literature regarding which antidepressants tend to work well on MS patients? Thank you beforehand for your reply
When can i please have an answer on this? Thank you 🙏🏼
Re: “Is there any literature regarding which antidepressants tend to work well on MS patients?”
Anti-depressants are like horses for courses, i.e. some work well in some patients and not others. In relation to this question, I would suggest avoiding the so-called tricyclic anti-depressants as they have quite potent anticholinergic effects and are CNS penetrant. We don’t really use the tricyclics for depression anymore because they are so poorly tolerated at antidepressant doses.
If you have pain, which is common in pwMS who are depressed, duloxetine seems to work well.
Would you recommend Duloxetine for a patient with constant and worsening burning pain in legs/feet rather than Gabapentin or Pregabalin?
My GP is strongly advising against using Duloxetine because of horrendous side effects when trying to stop. Recommending Gabapentin but after reading its own side effect profile, I worry it will worsen the longstanding depression. Please do you have any advice on this from your experience with depressed patients using Gabapentin or Pregablin? Thankyou.
Re: “Would you recommend that MS patients stir completely clear of all anticholinergic agents or the level of the anticholinergic effect matters?”
Yes and no! As a general rule, you should try and avoid anticholinergics, particularly the older generation ones that are CNS penetrant and affect cognition. The newer generation ones are much better tolerated and are designed not to cross the blood-brain-barrier. However, these agents still have side effects in the periphery (dryness of the mouth, blurring of vision, constipation, reduced sweating, etc.). There is no harm in taking them for a short period of time to see how you do. The good news is that there is a new class of bladder drug that works on the adrenergic system and does have anticholinergic side effects.
is there any table/ diagram that can be used for patients on DMTs who are considering a switch to another for whatever reason… be it forced (I,e, on tysabri the patient becomes JCV+ with a risky tire level) or due to lifestyle reason (patient doesn’t want to have monthly infusions).
The visual/ chart, allows the patient to see what are options/ generic recommendations to move onto next.
if one does exist, then please could someone post a link?
These slides from Prof G may help
https://multiple-sclerosis-research.org/2018/12/is-it-time-to-slay-the-gamblers-dilemma/
thanks for that. very useful
Hi Profs & MS Community, following a recent shed load of blood tests, I have been given the thumbs up for the treatment ocrelizumab at the end of the month. My lymphocytes were low after a lengthy period on tecfidera. It has taken 15 months for my bloods to show that they have reached a steady ish time to enable me to have the ocrelizumab. I am of course nervous as my MS is daily active with pain, stiffness, spasticity, bathroom & diet problems along with numbness of my right foot. I’m not sure where I am in terms of progression and maybe that is a good thing! I’m told and have read that I also have gum disease (inflamed gums) – so along with tinnitus, burning pain in my neck and head, I feel awful daily & am now taking opoid patches to help me get through the day. I need to also understand how does ocrelizumab work on my immune system and not bring me back to where I was with the tecidera? Am I just buying myself a possible 1 year to 18 mths worth of no further systoms?
Ocrevus and Hypogammaglobulinemia
I read your article about Ocrevus patients developing Hypogammaglobulinemia.
I am diagnosed with Selective Antibody Disorder and Multiple Sclerosis and using Ocrevus as my DMT. I am prescribed Hizentra to treat the PI.
Does using Immune Globulin increase the risk of incomplete B-cell depletion or create an environment where B cells regenerate more quickly? Before each of my Ocrevus infusions, my B cells are higher than expected even on a 5.5 month dosing schedule (they are incrementally creeping up higher and higher at testing each infusion cycle.
Does the Hizentra raise my B cell count?
Thoughts on the risk/benefit scenario?
Anything else we should be tracking or investigating?
Thanks.
Hello, any thoughts on my post?
Why myelinated mammalian nerves are fast and allow high frequency
https://medicalxpress.com/news/2019-11-myelinated-mammalian-nerves-fast-high.html
Fatigue/ lassitude in MS occurs often, but is not well understood. One theory is that it might be caused by an immune response.
In your opinion does fatigue completely resolve after successful (IRT)treatment?
Fatigue is one of the main complaints in MS, are there any studies that investigate the cause?
7 tesla
https://medicalxpress.com/news/2019-11-7t-mri-insights-multiple-sclerosis.html
Nicotinamide Mononucleotide – thoughts on utility for MS?
We looked at this about 5 years ago and so did another lab…our results were… don’t hold you breathe
Yeah, i kinda guessed that was the case. One study actually found an increase in axonial degeneration when mice were administered NMN (small study with poor design). Prof David Sinclair is pushing this stuff as an anti-aging drug. However, NAD+ fuels tumour growth. So…….
B cell time
https://medicalxpress.com/news/2019-11-multiple-sclerosis.html
Natalizumab b cell specific?
Isn’t the theory of BBB not leaving lymphocytes to enter the brain becoming obsolete? We have several recent studies reporting that lympocytes do cross BBB in healthy people too, and for a good purpose (of course this is not the case for MS).
And most importantly, B cells again? Boring, with limited effectiveness and without imagination. This is why Pharma would be thrilled with such an idea.
🙂
Single Dose of CD45-ADC Resets the Immune System, Delays the Onset of MS in Mice
Another irt
https://multiplesclerosisnewstoday.com/news-posts/2019/11/11/magenta-therapeutics-presents-first-immune-reset-results-with-antibody-drug-conjugate-across-multiple-autoimmune-diseases-at-acr/?utm_source=Multiple+Sclerosis&utm_campaign=f34e16b45a-RSS_NON-US_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_b5fb7a3dae-f34e16b45a-71699829
Ectrims 2019
Discontinuation of disease-modifying therapy and its clinical impact in MS patients over 60 years
http://www.professionalabstracts.com/ectrims2019/iplanner/#/presentation/708
Conclusions: In our cohort, discontinuation of DMT did not seem to influence clinical outcome, equating with the perceived marginal effect of immunomodulation on older stable and/or progressive patients
Mavens from Portugal
🙂
Vumerity’s $88,000 List Price Not What ‘We Had Hoped,’ National MS Society Says
The National Multiple Sclerosis Society has criticized Biogen for the $88,000 yearly list price it placed on Vumerity (diroximel fumarate), the newly approved oral disease-modifying treatment (DMT) for relapsing multiple sclerosis. That criticism extends to repeated price increases with Tecfidera (dimethyl fumarate), Biogen’s similar oral DMT for relapsing-remitting MS (RRMS)
https://multiplesclerosisnewstoday.com/national-ms-society-objects-vumerity-list-price/?utm_source=Multiple+Sclerosis&utm_campaign=d1c8cc9e1d-RSS_NON-US_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_b5fb7a3dae-d1c8cc9e1d-71699829
Fasting is everywhere 🙂
Intermittent fasting increases longevity in cardiac catheterization patients
In a new study by researchers at the Intermountain Healthcare Heart Institute in Salt Lake City, researchers have found that cardiac catheterization patients who practiced regular intermittent fasting lived longer than patients who don’t. In addition, the study found that patients who practice intermittent fasting are less likely to be diagnosed with heart failure.
🙂
As a confimed 16/8 Luis everything you flag up on IF is all very encouraging. However we are still to have any confirmation of which IF model is the most effective or even if it doesn’t matter as long as you do it to some degree. Personally I’ve my fingers crossed that it’s the latter so that 5/2 or 16/8 or whatever mode works as different approaches suit different people.
🙂
https://medicalxpress.com/news/2019-11-intermittent-fasting-longevity-cardiac-catheterization.html
My question is, does keto has the same benefits to IF? My understanding is that even though both can put body into producing ketones, IF has an advance in cell autophagy. Is that correct?
Isten to the mavens
https://beta.prx.org/stories/264341
We are not endorsing this site by releasing this comment
https://medicalxpress.com/news/2019-11-intermittent-fasting-longevity-cardiac-catheterization.html
Half a brain
https://medicalxpress.com/news/2019-11-brain-scans-reveal-human-compensates.html
mTOR inhibition = equal neuroportection
https://medicalxpress.com/news/2019-11-protein-mitochondria-surprisingly-neurons-stroke-like.html
Fasting is also an mTOR inhibitor 🙂
AAn 2019
mTOR Inhibition is good also when taking Glucocorticosteroid
mTORc1 but not JNK Inhibition Augments Gl
ucocorticosteroid Efficacy in Multiple
Sclerosis
http://indexsmart.mirasmart.com/AAN2019/PDFfiles/AAN2019-003077.pdf
Maybe you should fast before (if you dont wanr to take more drugs)
I was hoping to start reading more about black swans, antiviral research on here. Instead, I have to say that coming on this website gives me the same feeling as going around a museum exhibition of stuffed birds. Interesting, but where is it all going?
Unfortunately, there are no black swans this year. Brexit has killed them all 🙁 We need funding!
I was thinking the same :/ There hasn’t been a single new idea in this blog some time now and it’s not only Barts fault. Sad…
The Patient Revolution, a book mentioned on the BMJ blog.
The Bart’s MS blog fits into this line of thought, of patient involvement and engagement in MS healthcare.
Temelimab can distinguish between this two HERV? https://www.sciencedaily.com/releases/2019/11/191126075238.htm
Nope. Temelimab is targeting the HERV envelope, not an actual replicating virus.
Happy transplant birthday
To me 🙂
2 years post Hsct
Obrigado
starvation
Simulating amino acid starvation may improve dengue vaccines
https://medicalxpress.com/news/2019-11-simulating-amino-acid-starvation-dengue.html
The assumption is a virus is driving MS and halofuginone may assist in developing resistance??? I’m pretty certain most people with MS don’t have Dengue Fever.
Researchers have created a compound, that when tested in mice, was able to promote the reconstruction of the myelin sheath surrounding neuronal axons. These findings could pave the way to a new treatment for combating demyelinating conditions such as multiple sclerosis (MS).
The team set out to explore whether it was possible to block the hyaluronidase activity to promote remyelination.
In the most recent study, the team report that the compound S3 (a modified flavonoid) is able to reverse the effects of HA, leading to the remyelination of axons in mice.
The team are now beginning to apply the compound to a rare population of macaque monkeys with a multiple sclerosis-like disease known as Japanese macaque encephalomyelitis.
https://www.technologynetworks.com/drug-discovery/news/compound-created-to-help-reconstruct-myelin-in-multiple-sclerosis-323575?hss_channel=fbp-479163965435700&fbclid=IwAR1tKdvuDSjYme6VuB6yKckVPM9lr2q5Ku-XyPutnOFtT5HqJSYFnwMr8hM
Can anyone access this paper?
https://www.sciencedirect.com/science/article/pii/B9780128117095000338?via%3Dihub
We can’t get it either.
So if I pay and make it available via this website I’m assuming I’m in breach of copyright??
That would be correct.
Yes, just not sure how to send it to you
I have it
Send me some sort of email or whatever i will send it
Obrigado
I opened it through Russia… 😉
God bless the Russians and a good VPN. I got it too 😉.
Louise, thanks for your offer. I may set up a generic email account moving forward so we can exchange papers. You seem to have a wealth of information.
Luis not Louise. Sorry mate. Still waking up.
Go ahead
🙂
Obrigado
Has there been anything new on glucosamine supplements regarding MS in recent times? I’m wondering, as I am currently taking some to (perhaps) help a meniscus injury.
Behind a pay wall- https://www.sciencedirect.com/science/article/pii/B9780128498866000185
A simple treatment using four small molecules converts human astrocytes – a common type of cells in the nervous system – into new neurons, which develop complex structures after four months, as pictured. Credit: Gong Chen Lab, Penn State
“I believe turning glial cells that are the neighbors of dead neurons into new neurons is the best way to restore lost neuronal functions.”
https://www.technologynetworks.com/neuroscience/news/drug-combo-creates-new-neurons-from-neighboring-cells-315118?fbclid=IwAR2H5ebhZugc0DfdpEzaKIrAb35zgUiiuAvb-cwYJSzKNA53UngrxJuDjDw
A research team in Trinity College Dublin has uncovered a critical role for a protein called “PKM2” in the regulation of immune cell types at the heart of multiple inflammatory diseases.
The work identifies PKM2 as a potential therapeutic target for treating a host of diseases mediated by over-active immune cells, such as psoriasis and multiple sclerosis. The findings are reported today in the world’s leading metabolism journal Cell Metabolism – with the chief discovery being that PKM2 is a central ‘on’ switch for these cells.
“PKM2 is a fascinating protein that has a role in how cells use glucose for energy, but it also moonlights in the immune system, where we have found it can be especially troublesome. We are currently exploring it as a new target for therapies that might work in patients with diseases like psoriasis and multiple sclerosis, where treatment options are limited.”
https://www.technologynetworks.com/proteomics/news/metabolic-switch-for-inflammatory-diseases-327556?fbclid=IwAR1t1AkUXFrTgJeZ07m1LtlVbcQ7xWcoPcQi6Dh4k3Skjon6Eku3lLUaIH0
Could this be related to fasting too?
MS Relief During Pregnancy Tied to Changes in T Cell Types
Many dominant T cell variants decline during pregnancy and reappear afterward, possibly explaining why relapses of the autoimmune disease are less common when women are expecting.
“Pregnancy doesn’t shut down the entire immune system. It just selectively reduces a couple of dozen out of thousands and thousands of clones that are presumably associated with driving this autoimmune immune attack,” says Gold.
https://www.the-scientist.com/news-opinion/ms-relief-during-pregnancy-tied-to-changes-in-t-cell-types-66732?utm_content=107040332&utm_medium=social&utm_source=facebook&hss_channel=fbp-242730579188418&fbclid=IwAR05ITDdlpVLp8csRQpT7ie4bamKU5OXidYCkCIO0feoou0zqRXjZf3FIjo
I ll have a look
I’ve had some DMF-users tell me that they switched to half a dose (some with consent of their neurologist), in order to fight fatigue and/or low lymphocytes. Many were very pleased with the switch, as their lymphocyte count increased and they felt markedly less tired, and their RRMS remained stable. I understand the reluctance to endorse this as a general strategy, but on the other hand, is it not conceivable that for some patients, half the dose is just what they would need? As it is still not well understood how DMF works, let alone on an individual level, where it’s something of a trial-and-error approach… I would be interested to read your thoughts on this.