Some interesting comments on Twitter in relation to this post.
" No specific explanation. Making pt confused. Doc explain general. Pt told doc those symptoms, pt will be brushed off. Pt explain to their doctors, doc get 'bored'. Doc treat it as mere and normal prob faced by mser. Like, wait, what???"
When I was on Tysabri I definitely felt lethargic 3-4 days before infusion, also my old ms symptoms worsened. Now with Gilenya I'm feeling more balanced, less cog-fog and fatigue. Although when I took G in the morning I was not able to function normally during the day, completely exhausted and fell asleep at my desk. Taking it in the evening brought the balance and energy.
In reading this I feel like the true nature of MS fatigue is being further understood. Although I do also feel quite anxious as I have had intermittent fatigue, cog fog to varying degrees since being diagnosed in 2010 and I have always been told this is not a sign of disease activity per se but rather due to previous damage. I feel concerned that my brain has taken more of a battering than I thought. My fatigue has much improved since having Lemtrada (last dose 2017) but I do still struggle with it sometimes as well as cog fog; I take Modafinil to help me to manage on my work days. Does this mean I should be exploring further Lemtrada dose or A/HSTC to protect my brain further? I am currently off work feeling inflamed and fatigued....is this due to my booster vaccination last Wednesday? Is it another virus? Is it worse because of MS? I don't know
A fascinating article, Gavin. I'm SP- rather than RR- MS, so detecting disease activity is a problem. However, I can relate to ALL of the fatigue factors on your diagram. In fact, I'd put fatigue as probably my most debilitating symptom currently, ahead of the more obvious numbness / loss of motor control / balance in my left leg. Could one of the treatments you describe as helping with fatigue help someone like me, even if the treatments are essentially intended for RR- cases? I'm not currently being treated with any MS medications per se.
When I worked in a hospice, I thought one of the reasons patients were always so fatigued was natures way of giving them a break from all the emotional and physical pain - by sleeping. I think for some people the same is true in MS.
Initially when I was on Tysabri I used to feel as if it was wearing off when I was a week off having my next infusion, this included cog fog and fatigue but after I had been on the drug for a number of months this no longer occurred. Since HSCT the only time that I experience these symptoms is with cold, damp weather (in the same way as a lot of people struggle with the heat). I also get my old symptoms of dizziness and difficulty using my right arm and leg. As soon as the weather improves my symptoms also do. In the summer months it’s like I no longer have MS.
Wow! This article has peaked my interest significantly!. So I’ve been diagnosed with ms for 14 years on tysabri for 14 years and the last 3 years I’ve been battling fatigue, cog-fog and in general sickness behaviour. I’ve been told it has been post viral malaise but can’t ever recall having a virus (and we all know when we have been or are I’ll!) I get worse fatigue and cog-fog in the 4 days leading to my infusion most months and if I’m delayed for any reason then omg it’s like I’m unable to function, sleep more but not better quality and the cog-fog is like swimming through tar! So to me this article is interesting and makes sense!
Fantastic article. I've been on Ocrevus for almost 4 years. I only learned about the term crap gap about a year ago and I was so relieved to hear I wasn't alone. I had to educate my neurologist on the term! (Genentech needs to educate doctors on the crap gap and start doing some research) My crap gap feels like all of my old symptoms returning to some degree. I compare it to the tin man from Wizard of Oz. My infusion is like Dorothy oiling up the tin man! I have been able to receive my infusions at 24 weeks (vs 6 months) which does shorten my intervals by a couple of weeks. I have had some stressful periods recently and while I have no new activity on MRI I definitely notice a return of symptoms outside of my crap gap. While I feel like I am taking care of myself with regular exercise, diet, and taking a DMT I have often wondered what these symptoms really mean. I've had neurologists tell me that "this is just the disease". What you've outlined in your article makes sense to me. I really think you're on to something, Prof G!
Hello, thank you for this. I experience quite frequent episodes where my cognition and other faculties get abruptly, unmanageably worse, which usually go along with depressive symptoms but often appear before those set in. My MS is advancing and I'm currently on no treatment beyond nutritional supplements and my own faltering efforts with internittent fasting - so I wish there was some way to access ocrelizumab but without conspicuous conventional relapses this is probably not possible.
I have SPMS and fatigue is definitely my most life altering symptom. I have never taken any DMT but have recently started a course of pressurised oxygen therapy and am noticing huge benefits to my fatigue levels. My balance and even my gait seem to be improving. It could all be in my head but I definitely think the anti-inflammatory is making a difference.
Such an interesting article- thank you. Having experienced a number of these symptoms recently without increased neurological signs I myself feel like its a type of relapse as it has brought about a significant deterioration in my general wellbeing. These symptoms can be experienced in those not dealing with MS so it's the unfailing problem of attribution - infection/inflammation or MS? With little chance of getting biomarkers tested and a timely MRI its not going to be straightforward to clearly identify whether it is a relapse.
The effects of changes to infusion interval with Natalizumab from 4 weeks to 6 weeks, due to the lockdown provided an opportunity for me to assess whether I might notice some deterioration due to an extra 2 week interval between infusions. Initial sceptiscm as to the reasons for this change eg. saving cash on drug costs and service provision, was replaced fairly quickly by the appreciation of the benefits to me personally - fewer trips to hospital/yr, less exposure to risky situations regarding Covid. The apprehension of the effect of a longer infusion interval still remained so obviously I was looking to attribute any negative observations to the delayed period for infusions. However, a year and a half later I can't say I experienced any significant negative impact and am happier with a less frequent dosing schedule, as the risk of serious complications may be reduced also. What does this say about the dosing regimen for Natalizumab? From what I gather the dose you receive does not vary according to physical characteristics eg body weight so possibly I may be in the lucky group that perhaps had a larger relative dose so that a reduction in drug levels over an extended infusion interval perhaps had no significance?
Very interesting, after having Lhermitte's sign with CIS, the reason I went back to my GP (and ultimately ended with a diagnosis of MS) was because of 'cog fog' symptoms and feeling like I was suffering with memory loss.
My fatigue levels vary daily, especially after a shower. I am a little anxious at the moment as I might be having a relapse and both my parents have serious health issues. These all affect my fatigue and cog fog
I’m having this sickness behaviour right now. I’m currently on Kesimpta (every 4 weeks) and my next self injection is due on next Saturday.
I was on natalizumab earlier and I had the wearing-off phenomenon before the next infusion. But my neurologist wanted me to go off natalizumab on to Kesimpta since I got JC positive and I went off meds since I got pregnant and after 3 months giving birth, I started Kesimpta.
I’ve been on it for 3 months now and I still don’t know if it’s as good as natalizumab cause I felt great and had no symptoms when I was on Tysabri.
I have had prolonged periods of fatigue which include feeling low and depressed . I’m on natalizumab six weekly and often feel worse prior to next infusion. On the Tysabri Facebook forum many of us talk about feeling like we need our next fix! I’ve been told by my MS team that it’s psychological and no biological reason why this should be the case. I also had Covid three months ago and I have been feeling so much worse with fatigue, depression and other symptoms since.
Yep. Fatigue and I believe that it should be a defined relapse. It's one of the most common symptoms of MS and, anyway, one isn't going to grab an MRI every time a symptom manifests itself. I don't have it much nowadays but what brought it on was high temperatures. What keeps fatigue in check is exercise, but what if it's difficult for people, either because they're busy, have a high EDSS or find motivation very hard? I worked 12 hour days, if lucky, for the last 4 years of my career and, but for the dog, I wouldn't have had any exercise whatever (I walked him at midnight or 5am if I had the time).
Your algorithm points to social isolation twice. Interesting, particularly during the pandemic. During our first alumni lunch in 2years, one of our number, said the meet up would do him as much good as his cancer treatment.
Some interesting comments on Twitter in relation to this post.
" No specific explanation. Making pt confused. Doc explain general. Pt told doc those symptoms, pt will be brushed off. Pt explain to their doctors, doc get 'bored'. Doc treat it as mere and normal prob faced by mser. Like, wait, what???"
https://twitter.com/aimi_sa95/status/1450486357072089096?s=20
"Happens to me all the time. I have a hard time communicating it to my MS doctor. Sometimes I don't even mention it, cause it isn't easy to convey."
https://twitter.com/hcanes100/status/1450492245854105610?s=20
When I was on Tysabri I definitely felt lethargic 3-4 days before infusion, also my old ms symptoms worsened. Now with Gilenya I'm feeling more balanced, less cog-fog and fatigue. Although when I took G in the morning I was not able to function normally during the day, completely exhausted and fell asleep at my desk. Taking it in the evening brought the balance and energy.
In reading this I feel like the true nature of MS fatigue is being further understood. Although I do also feel quite anxious as I have had intermittent fatigue, cog fog to varying degrees since being diagnosed in 2010 and I have always been told this is not a sign of disease activity per se but rather due to previous damage. I feel concerned that my brain has taken more of a battering than I thought. My fatigue has much improved since having Lemtrada (last dose 2017) but I do still struggle with it sometimes as well as cog fog; I take Modafinil to help me to manage on my work days. Does this mean I should be exploring further Lemtrada dose or A/HSTC to protect my brain further? I am currently off work feeling inflamed and fatigued....is this due to my booster vaccination last Wednesday? Is it another virus? Is it worse because of MS? I don't know
A fascinating article, Gavin. I'm SP- rather than RR- MS, so detecting disease activity is a problem. However, I can relate to ALL of the fatigue factors on your diagram. In fact, I'd put fatigue as probably my most debilitating symptom currently, ahead of the more obvious numbness / loss of motor control / balance in my left leg. Could one of the treatments you describe as helping with fatigue help someone like me, even if the treatments are essentially intended for RR- cases? I'm not currently being treated with any MS medications per se.
When I worked in a hospice, I thought one of the reasons patients were always so fatigued was natures way of giving them a break from all the emotional and physical pain - by sleeping. I think for some people the same is true in MS.
Initially when I was on Tysabri I used to feel as if it was wearing off when I was a week off having my next infusion, this included cog fog and fatigue but after I had been on the drug for a number of months this no longer occurred. Since HSCT the only time that I experience these symptoms is with cold, damp weather (in the same way as a lot of people struggle with the heat). I also get my old symptoms of dizziness and difficulty using my right arm and leg. As soon as the weather improves my symptoms also do. In the summer months it’s like I no longer have MS.
Wow! This article has peaked my interest significantly!. So I’ve been diagnosed with ms for 14 years on tysabri for 14 years and the last 3 years I’ve been battling fatigue, cog-fog and in general sickness behaviour. I’ve been told it has been post viral malaise but can’t ever recall having a virus (and we all know when we have been or are I’ll!) I get worse fatigue and cog-fog in the 4 days leading to my infusion most months and if I’m delayed for any reason then omg it’s like I’m unable to function, sleep more but not better quality and the cog-fog is like swimming through tar! So to me this article is interesting and makes sense!
Fantastic article. I've been on Ocrevus for almost 4 years. I only learned about the term crap gap about a year ago and I was so relieved to hear I wasn't alone. I had to educate my neurologist on the term! (Genentech needs to educate doctors on the crap gap and start doing some research) My crap gap feels like all of my old symptoms returning to some degree. I compare it to the tin man from Wizard of Oz. My infusion is like Dorothy oiling up the tin man! I have been able to receive my infusions at 24 weeks (vs 6 months) which does shorten my intervals by a couple of weeks. I have had some stressful periods recently and while I have no new activity on MRI I definitely notice a return of symptoms outside of my crap gap. While I feel like I am taking care of myself with regular exercise, diet, and taking a DMT I have often wondered what these symptoms really mean. I've had neurologists tell me that "this is just the disease". What you've outlined in your article makes sense to me. I really think you're on to something, Prof G!
Hello, thank you for this. I experience quite frequent episodes where my cognition and other faculties get abruptly, unmanageably worse, which usually go along with depressive symptoms but often appear before those set in. My MS is advancing and I'm currently on no treatment beyond nutritional supplements and my own faltering efforts with internittent fasting - so I wish there was some way to access ocrelizumab but without conspicuous conventional relapses this is probably not possible.
I have SPMS and fatigue is definitely my most life altering symptom. I have never taken any DMT but have recently started a course of pressurised oxygen therapy and am noticing huge benefits to my fatigue levels. My balance and even my gait seem to be improving. It could all be in my head but I definitely think the anti-inflammatory is making a difference.
Such an interesting article- thank you. Having experienced a number of these symptoms recently without increased neurological signs I myself feel like its a type of relapse as it has brought about a significant deterioration in my general wellbeing. These symptoms can be experienced in those not dealing with MS so it's the unfailing problem of attribution - infection/inflammation or MS? With little chance of getting biomarkers tested and a timely MRI its not going to be straightforward to clearly identify whether it is a relapse.
The effects of changes to infusion interval with Natalizumab from 4 weeks to 6 weeks, due to the lockdown provided an opportunity for me to assess whether I might notice some deterioration due to an extra 2 week interval between infusions. Initial sceptiscm as to the reasons for this change eg. saving cash on drug costs and service provision, was replaced fairly quickly by the appreciation of the benefits to me personally - fewer trips to hospital/yr, less exposure to risky situations regarding Covid. The apprehension of the effect of a longer infusion interval still remained so obviously I was looking to attribute any negative observations to the delayed period for infusions. However, a year and a half later I can't say I experienced any significant negative impact and am happier with a less frequent dosing schedule, as the risk of serious complications may be reduced also. What does this say about the dosing regimen for Natalizumab? From what I gather the dose you receive does not vary according to physical characteristics eg body weight so possibly I may be in the lucky group that perhaps had a larger relative dose so that a reduction in drug levels over an extended infusion interval perhaps had no significance?
Very interesting, after having Lhermitte's sign with CIS, the reason I went back to my GP (and ultimately ended with a diagnosis of MS) was because of 'cog fog' symptoms and feeling like I was suffering with memory loss.
My fatigue levels vary daily, especially after a shower. I am a little anxious at the moment as I might be having a relapse and both my parents have serious health issues. These all affect my fatigue and cog fog
I’m having this sickness behaviour right now. I’m currently on Kesimpta (every 4 weeks) and my next self injection is due on next Saturday.
I was on natalizumab earlier and I had the wearing-off phenomenon before the next infusion. But my neurologist wanted me to go off natalizumab on to Kesimpta since I got JC positive and I went off meds since I got pregnant and after 3 months giving birth, I started Kesimpta.
I’ve been on it for 3 months now and I still don’t know if it’s as good as natalizumab cause I felt great and had no symptoms when I was on Tysabri.
I have had prolonged periods of fatigue which include feeling low and depressed . I’m on natalizumab six weekly and often feel worse prior to next infusion. On the Tysabri Facebook forum many of us talk about feeling like we need our next fix! I’ve been told by my MS team that it’s psychological and no biological reason why this should be the case. I also had Covid three months ago and I have been feeling so much worse with fatigue, depression and other symptoms since.
Yep. Fatigue and I believe that it should be a defined relapse. It's one of the most common symptoms of MS and, anyway, one isn't going to grab an MRI every time a symptom manifests itself. I don't have it much nowadays but what brought it on was high temperatures. What keeps fatigue in check is exercise, but what if it's difficult for people, either because they're busy, have a high EDSS or find motivation very hard? I worked 12 hour days, if lucky, for the last 4 years of my career and, but for the dog, I wouldn't have had any exercise whatever (I walked him at midnight or 5am if I had the time).
Your algorithm points to social isolation twice. Interesting, particularly during the pandemic. During our first alumni lunch in 2years, one of our number, said the meet up would do him as much good as his cancer treatment.