Reading: Another School Day
09/02/26 22:59
Been doing some more reading on Cladribine/Mavenclad. And very interesting it was too. The drug was actually initially developed in injectable form for treatment of a form of leukaemia. It works by targeting type B and T lymphocytes (part of the white blood cell battle crew within each of us). It doesn’t ‘appear’ to damage other cells. It is thought that the B & T cells are then rebuilt in our body in a way that they no longer attack the myelin coating on nerve cells.
Reading about the treatment, it sounds a) largely positive, and b) like there’s a surprising amount of supposition on how it works. Drug development does seem to be through a hell of a lot of trial and error, and I guess if something works you don’t need to know why it does (even if that would be nice). You just need to know that it works and hopefully doesn’t cause bigger issues than it solves.
When it went up for approval originally in 2010 it didn’t get it due to there being more patients getting cancer than those in the placebo group. Apparently this was revisited and it seems that the numbers in the placebo group were statistically unusually low i.e. lower than just the national average. When they compared the results of the treatment group to the national average there was in fact no increased cancer risks (apparently). Statistics do need to be understood and challenged in a variety of ways, don’t they?
With the marketing of the drug only permitted since 2017 there can’t be any studies of the long term effects. But so far there haven’t been any significant concerns raised. Side effects can be; a decrease in white blood cells (lymphopenia), herpes virus infections (shingles, cold sores etc), hair loss, and rashes. Most my mates are follically challenged and I guess hair loss wouldn’t be the end of the world—and I’d to save money on haircuts too (though I’d rather not; fingers crossed). Whilst the long term effects are not known, the medium term effects are judged to be less serious than those of similarly effective MS drugs like Alemtuzumab, and Natalizumab (and having done a little more reading jeez the potential side effects of those drugs are indeed a lot more serious).
Cladribine is also not recommended for anyone wanting to start a family. I’m not currently, so that’s okay. For now.
Reading about the treatment, it sounds a) largely positive, and b) like there’s a surprising amount of supposition on how it works. Drug development does seem to be through a hell of a lot of trial and error, and I guess if something works you don’t need to know why it does (even if that would be nice). You just need to know that it works and hopefully doesn’t cause bigger issues than it solves.
When it went up for approval originally in 2010 it didn’t get it due to there being more patients getting cancer than those in the placebo group. Apparently this was revisited and it seems that the numbers in the placebo group were statistically unusually low i.e. lower than just the national average. When they compared the results of the treatment group to the national average there was in fact no increased cancer risks (apparently). Statistics do need to be understood and challenged in a variety of ways, don’t they?
With the marketing of the drug only permitted since 2017 there can’t be any studies of the long term effects. But so far there haven’t been any significant concerns raised. Side effects can be; a decrease in white blood cells (lymphopenia), herpes virus infections (shingles, cold sores etc), hair loss, and rashes. Most my mates are follically challenged and I guess hair loss wouldn’t be the end of the world—and I’d to save money on haircuts too (though I’d rather not; fingers crossed). Whilst the long term effects are not known, the medium term effects are judged to be less serious than those of similarly effective MS drugs like Alemtuzumab, and Natalizumab (and having done a little more reading jeez the potential side effects of those drugs are indeed a lot more serious).
Cladribine is also not recommended for anyone wanting to start a family. I’m not currently, so that’s okay. For now.
Comments
The Mavenclad
26/01/26 23:45
It’s taken a while for the delivery to be sorted, but finally it has now. I’ve now got the new stuff: ‘Mavenclad’ (aka Cladribine) at home. I started them today (Monday). Just got five days of them, then another five days four weeks later. Hopefully the next delivery will go okay.
Hopefully all will go okay. Very different drug to my last one (Tecfidera). A one in ten chance of getting shingles while on it. It’s funny the way 1 in 10 sounds very likely but 90% chance of not getting it says very unlikely. Presentation of data and fears, hey.
Was a bit different when it arrived with the bright banded “Handle with care—CYTOTOXIC” label on the over large box. Instruction from the delivery company: if the tablets are damaged (i.e, if any are broken and partly powder) you don’t take them and have to inform them and they’ll pick up said broken tablets and bring a tablet to replace it. Of course you can’t check them in advance so if I open the last tablet and find it’s broken then it gets messy in terms of taking the full dosage. But I guess everything will be okay. I hope so…
The instructions on taking the tablets out of the container seem a little more complicated than they should be. But I took my first two day’s doses okay. And so far I reckon there’s a 90% chance I wont contract shingles.
Hopefully all will go okay. Very different drug to my last one (Tecfidera). A one in ten chance of getting shingles while on it. It’s funny the way 1 in 10 sounds very likely but 90% chance of not getting it says very unlikely. Presentation of data and fears, hey.
Was a bit different when it arrived with the bright banded “Handle with care—CYTOTOXIC” label on the over large box. Instruction from the delivery company: if the tablets are damaged (i.e, if any are broken and partly powder) you don’t take them and have to inform them and they’ll pick up said broken tablets and bring a tablet to replace it. Of course you can’t check them in advance so if I open the last tablet and find it’s broken then it gets messy in terms of taking the full dosage. But I guess everything will be okay. I hope so…
The instructions on taking the tablets out of the container seem a little more complicated than they should be. But I took my first two day’s doses okay. And so far I reckon there’s a 90% chance I wont contract shingles.
Medication Moves Part III
16/11/25 13:33
Over the last few years I’ve seen several consultants, doctors and nurses with respect to the MS. This most recent one last week was the consultant who delivered the original diagnosis to me. There has been a change of treatment from Copaxone to Tecfidera in that time as further developments came. Not sure whether he was involved in the decision making process for that change or not. In any case after talking with me and going through my notes he wondered whether at this point in the illness (and with my age) it may be worth changing to a third drug. I’d never heard of it. It is stronger and works in a different way. It kinda resets your white blood cells to make them less likely to go after your myelin (okay I’m paraphrasing it a lot there). You only take five days of tablets one month (on consecutive days) then another five days the following month. And that’s repeated the next year. In theory that may be the only treatment needed for many years.
The guidance on prescribing it (Mavenclad/Cladribine) has changed so it may not have been an option for very long. It is horrendously expensive but has the advantage of not requiring ongoing treatment and daily tablets for the rest of your life (and the regular palaver of organising and waiting for the monthly deliveries of said tablets etc)—there’s some limited blood monitoring (white blood cell monitoring) around the first couple of months of taking the Cladribine but not much else.
I’ve ten days or so left to think about it, before talking to an MS Nurse again. But at the moment I’m minded to go for it. I’ll do some further research first of course. But twenty days of taking tablets over 13 months is better than 365 days a year for ever, ain’t it?
Watch this space.
- About Cladribine on the MS Society website -
The guidance on prescribing it (Mavenclad/Cladribine) has changed so it may not have been an option for very long. It is horrendously expensive but has the advantage of not requiring ongoing treatment and daily tablets for the rest of your life (and the regular palaver of organising and waiting for the monthly deliveries of said tablets etc)—there’s some limited blood monitoring (white blood cell monitoring) around the first couple of months of taking the Cladribine but not much else.
I’ve ten days or so left to think about it, before talking to an MS Nurse again. But at the moment I’m minded to go for it. I’ll do some further research first of course. But twenty days of taking tablets over 13 months is better than 365 days a year for ever, ain’t it?
Watch this space.
- About Cladribine on the MS Society website -
Study Follow Up
19/08/25 10:13
I volunteered to be part of a study group being looked at for understanding the effects of Tecfidera on stuff outside of the MS treatment. Specially it was looking at the effects of Tecfidera on the liver. There was some information suggesting that it may have beneficial effects.
So I’ve been to a baseline study when they looked at the liver before I began taking the drug and then a three monthly review, when they looked at the same information with measurements and a FibroScan, and asked about any changes I may have had e.g. in diet etc.
Anyhoo the upshot is I have no more days to appear for the study—unless they give me a call—and just the two visits will be it. While the cirrhosis index (or whatever they called the value) remained unchanged and low/normal, the fattiness of the liver had improved by almost 20%. That’s quite cool. So who knows, people with fatty livers may one day be prescribed Tecfidera for their treatment and it wont just be an MS treatment. All data is useful, and I’m glad I volunteered.
So I’ve been to a baseline study when they looked at the liver before I began taking the drug and then a three monthly review, when they looked at the same information with measurements and a FibroScan, and asked about any changes I may have had e.g. in diet etc.
Anyhoo the upshot is I have no more days to appear for the study—unless they give me a call—and just the two visits will be it. While the cirrhosis index (or whatever they called the value) remained unchanged and low/normal, the fattiness of the liver had improved by almost 20%. That’s quite cool. So who knows, people with fatty livers may one day be prescribed Tecfidera for their treatment and it wont just be an MS treatment. All data is useful, and I’m glad I volunteered.
A Surprise Physio Appointment
27/06/25 13:18
This week I had an appointment at the Walton Centre. When I first got it I was a bit surprised by it, as the Neurologist consultant on the appointment was someone I had not heard of or met before. But I have just changed my medication (to Tecfidera from Copaxone) and also volunteered to be part of a study on the effects of the drug, so maybe another consultant would not be that unusual.
In actual fact it turned out to be down to some technical issue at their end in that the appointment was real in terms of date and time, but it wasn’t with the named consultant. It was with a physiotherapist (and a trainee).
It was actually good timing in some ways. Usually I work three or four days but last week I’d worked on five days and on Friday I’d had an issue with severe fatigue in my legs. Friday evening my legs kinda folded underneath me and I ended up sat on the pavement when I was nearly home. A Good Samaritan was passing by and cajoled me into getting into his car for a lift of all of a 150 metres. The stress on my legs with that issue and the general fatigue maybe suggests that I should stick with four days max so that there is more time for recovery. I ended up using a walking stick on Saturday and Sunday to take some pressure off my left knee having not needing it for months.
So on Monday I went into the physio at the neurological centre unsure if it was a good time to be there or not. As it happens they were generally pretty happy with my range of movement and walking (when I thought it was worse than usual). There are obviously issues with the strength and stability but they were happy that I didn’t actually need a follow up physio appointment until I request one. Shocking. They gave me a bit of a runaround the place and then gave me a couple of pages of exercises to do. And I will indeed do them regularly. They said there is no need to stress about missing a day, but to aim for 5 days in 7.
They were very happy about me delivering beer due to the exercise it gives me. They were pleased to hear I always had my walking stick in my bag in my Boy Scout way, especially if I didn’t often need to use it. Always Be Prepared. Of course physio exercises are in addition to the general day to day work and leisure movements.
Hopefully I won't need the walking stick again for many months (or to rely on passing Good Samaritans (that said it was lovely of them to do it and boosts my faith in humanity—even in North Liverpool)). Onwards and Upwards.
In actual fact it turned out to be down to some technical issue at their end in that the appointment was real in terms of date and time, but it wasn’t with the named consultant. It was with a physiotherapist (and a trainee).
It was actually good timing in some ways. Usually I work three or four days but last week I’d worked on five days and on Friday I’d had an issue with severe fatigue in my legs. Friday evening my legs kinda folded underneath me and I ended up sat on the pavement when I was nearly home. A Good Samaritan was passing by and cajoled me into getting into his car for a lift of all of a 150 metres. The stress on my legs with that issue and the general fatigue maybe suggests that I should stick with four days max so that there is more time for recovery. I ended up using a walking stick on Saturday and Sunday to take some pressure off my left knee having not needing it for months.
So on Monday I went into the physio at the neurological centre unsure if it was a good time to be there or not. As it happens they were generally pretty happy with my range of movement and walking (when I thought it was worse than usual). There are obviously issues with the strength and stability but they were happy that I didn’t actually need a follow up physio appointment until I request one. Shocking. They gave me a bit of a runaround the place and then gave me a couple of pages of exercises to do. And I will indeed do them regularly. They said there is no need to stress about missing a day, but to aim for 5 days in 7.
They were very happy about me delivering beer due to the exercise it gives me. They were pleased to hear I always had my walking stick in my bag in my Boy Scout way, especially if I didn’t often need to use it. Always Be Prepared. Of course physio exercises are in addition to the general day to day work and leisure movements.
Hopefully I won't need the walking stick again for many months (or to rely on passing Good Samaritans (that said it was lovely of them to do it and boosts my faith in humanity—even in North Liverpool)). Onwards and Upwards.