When I started working in neurology over 30 years ago, I recall always having at least one or two patients on the neurology ward with pressure ulcers. Thankfully, this is now uncommon...
Brutal subastack article, but I keep telling my family and friends that's a reality for many people with MS. This is helpful in the sense that avoiding pressure sores is life prolonging and helps avoid infection. However, I have seen a lady and she is by all means EDSS 9.5 and has had PPMS for 30+ years, but never has had a sore because she is well cared for by her family and receives frequent at home physiotherapy and is also moved at night every 3-4 hours by her husband.
This proves that prevention and good care make a differencerence. That is why the presence of a pressure sore should raise questions about neglect/abuse and explains the legislation in the UK.
You read these posts and thank God for Dignitas. I always thought MND was the disease to avoid. But at least you’re gone in c.18 months. The list of grim things to look forward to in ‘advanced MS’ seems to grow every day. The day a researcher can develop a polypill to stop this disease in its tracks / prevent a patient from becoming an ‘advanced MSer’, will be one to celebrate. I’m going to stop reading these posts as it’s all so depressing. In 2026 it’s scandalous that people with MS face a long undignified death which affects almost every function.
I feel the same sometimes, go on something like Reddits multiple sclerosis group there’s 100’s of post where people are doing well decades after diagnosis, those are the posts that keep me positive when down
As a PWMS (EDSS 6.5, age 56) I had a pressure sore on my ankle bone about 10 years ago that took 18 months to properly heal. With an increasing lack of mobility I can feel a new one brewing on my sacrum, from the inside out, due to lack of repositioning. Prevention of it worsening is key to me. I have a high-grade pressure relieving mattress (ROHO), I feel , I'm now high risk, but never been assessed. despite regularly flagging it up to all my HCPs. Prevention measures appear to be a square of silicone iand moisturising the skin.. I understand the TVNs are over stretched, but prevention is better than treatment. Nothing appears to be done until the skin breaks. Even the team at Queen Square have nothing to add - I feel there must be other things I can do, buy myself to help spread the pressure- it is so frustrating.
Another preventative method to consider is a medical sheepskin rug laid between the skin and bedsheet. It has worked well for my partner who spends ~80% of the day in bed.
Yes, very good point. This is something I didn't go into. There is also a complex and large literature on how to treat pressure sores and which dressings and topical treatments to use.
I may have asked this before and forgot - in which case ignore but:
TAF cleared JCV from CSF in a Norwegian PML case within 3-6 months. Since TAF works through direct antiviral mechanisms rather than immune pathways, could it work as an adjunct in high JCV titre Tysabri patients to reduce PML risk? Seems like an obvious trial given Biogen's previous failed mefloquine attempt.
I guess...Are there any Tysabri patients who've been on TAF concurrently for hepatitis B or other reasons whose JCV titres have been monitored? Even that observational data would be something.
Comorbid hepatitis B in natalizumab-treated patients is very rare. But worth looking at if someone has popluation data. Biogen the pharma company that developed natalizumab may be the best to look.
I couldn't bear to read the whole post. It's bad enough when I get sick and have to spend several days in bed. I have EDS which I suspect would put me at higher risk of pressure sores.
I am aware how brutal these types of newsletters can be, but pwMS and the wider MS community need to know how bad MS can be. This will hopefully nudge them towards adopting a more aggressive treatment approach from the start. I suspect the drop in pressure sores among pwMS is because we are preventing people from developing advanced MS.
I wonder how many of us older MSers have never been offered a DMT when it might have done some good, we were not seen let alone recalled and given an MRI. Now we can add probable pressure sores to the list of things that probably could have been avoided .
I am guessing asking Archimedes for help by putting the patient in a bath or hotub when awake to redestribute pressure points is not practical or carries an open wound infection risk?!
Brutal subastack article, but I keep telling my family and friends that's a reality for many people with MS. This is helpful in the sense that avoiding pressure sores is life prolonging and helps avoid infection. However, I have seen a lady and she is by all means EDSS 9.5 and has had PPMS for 30+ years, but never has had a sore because she is well cared for by her family and receives frequent at home physiotherapy and is also moved at night every 3-4 hours by her husband.
This proves that prevention and good care make a differencerence. That is why the presence of a pressure sore should raise questions about neglect/abuse and explains the legislation in the UK.
You read these posts and thank God for Dignitas. I always thought MND was the disease to avoid. But at least you’re gone in c.18 months. The list of grim things to look forward to in ‘advanced MS’ seems to grow every day. The day a researcher can develop a polypill to stop this disease in its tracks / prevent a patient from becoming an ‘advanced MSer’, will be one to celebrate. I’m going to stop reading these posts as it’s all so depressing. In 2026 it’s scandalous that people with MS face a long undignified death which affects almost every function.
I feel the same sometimes, go on something like Reddits multiple sclerosis group there’s 100’s of post where people are doing well decades after diagnosis, those are the posts that keep me positive when down
Impressively thorough post :)
It is one of the chapters for a book I am writing on MS Self-Management.
This is hard to read, but necessary to discuss.
As a PWMS (EDSS 6.5, age 56) I had a pressure sore on my ankle bone about 10 years ago that took 18 months to properly heal. With an increasing lack of mobility I can feel a new one brewing on my sacrum, from the inside out, due to lack of repositioning. Prevention of it worsening is key to me. I have a high-grade pressure relieving mattress (ROHO), I feel , I'm now high risk, but never been assessed. despite regularly flagging it up to all my HCPs. Prevention measures appear to be a square of silicone iand moisturising the skin.. I understand the TVNs are over stretched, but prevention is better than treatment. Nothing appears to be done until the skin breaks. Even the team at Queen Square have nothing to add - I feel there must be other things I can do, buy myself to help spread the pressure- it is so frustrating.
Another preventative method to consider is a medical sheepskin rug laid between the skin and bedsheet. It has worked well for my partner who spends ~80% of the day in bed.
Yes, very good point. This is something I didn't go into. There is also a complex and large literature on how to treat pressure sores and which dressings and topical treatments to use.
I may have asked this before and forgot - in which case ignore but:
TAF cleared JCV from CSF in a Norwegian PML case within 3-6 months. Since TAF works through direct antiviral mechanisms rather than immune pathways, could it work as an adjunct in high JCV titre Tysabri patients to reduce PML risk? Seems like an obvious trial given Biogen's previous failed mefloquine attempt.
Possibly, but would need a larger trial than n=1. The spontaneous cure rate for PML is ~20%, so it may have nothing to do with TAF.
Greetings Professor! guess the question is whats the hold up 😂
I guess...Are there any Tysabri patients who've been on TAF concurrently for hepatitis B or other reasons whose JCV titres have been monitored? Even that observational data would be something.
Comorbid hepatitis B in natalizumab-treated patients is very rare. But worth looking at if someone has popluation data. Biogen the pharma company that developed natalizumab may be the best to look.
I couldn't bear to read the whole post. It's bad enough when I get sick and have to spend several days in bed. I have EDS which I suspect would put me at higher risk of pressure sores.
I am aware how brutal these types of newsletters can be, but pwMS and the wider MS community need to know how bad MS can be. This will hopefully nudge them towards adopting a more aggressive treatment approach from the start. I suspect the drop in pressure sores among pwMS is because we are preventing people from developing advanced MS.
I wonder how many of us older MSers have never been offered a DMT when it might have done some good, we were not seen let alone recalled and given an MRI. Now we can add probable pressure sores to the list of things that probably could have been avoided .
I am guessing asking Archimedes for help by putting the patient in a bath or hotub when awake to redestribute pressure points is not practical or carries an open wound infection risk?!
Historically, immersion in water (hydrotherapy) or the use of water-filled mattresses has been used, but you are correct, they are not practical.