That what I’m on now. I still call it Tysabri in the same way I call the Dyson a Hoover. Also it helps me to forget that it’s different because I would have preferred to stick to the tried-and-tested, but that wasn’t an option.
After long chat with ms nurse this morning basically been told Mavenclad and tysabri and b cell treatment are off the table , explained I have appointment with gastro to voice my concerns and if I had his back up and wrote a letter explaining all my concerns as to wanting to get on a higher efficiency dmt asap would it help , apparently not
Been told need to have another relapse to meet the criteria of possibly moving up to tysabri or mavenclad after being on tecrifedra for an amount of time as that’s the guidelines/law they are governed by ?
I’ve agreed to start as want to start a dmt asap hopefully it works for me , thanks for your help it’s been great to have your thoughts/ experiences
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They have an NHS treatment algorithm which works on an “escalation” model (fail one treatment, get moved up to the next more effective). But lots of hospitals are not following this because it is outdated.
I don’t understand the logic of having to “wait for a relapse”. You don’t want a relapse. And some relapses leave behind permanent disability. Once the damage is done, it seems hard to reverse.
And guidelines are certainly not “law”… that I really don’t believe.
There is also an argument for getting on with a DMT of some sorts, of course. If you’re still not happy I’d consider going private, perhaps to a different trust where they are more amenable. You might also see if your GP will help you exercise your right to choose where you are treated - and opt for a different trust that way.
Or, as you say, you could just stay where you are given the Crohns issue!
Hi leonora
Not sure how to go about going to a different trust didn’t even know that was an option, private is out of my budget I’m guessing it would be extremely expensive?
Feel like I’ve hit a brick wall , I have a consultation with a private gastroenterologist next Tuesday but thinking of cancelling to save money as don’t think it will make a difference
Thanks
Thank you for the update. Well, at least you know where you stand. Some neurologists are more independent-minded than others or are more astute political animals, or are more powerful figures in their local worlds than others. And the bean-counters hold more of a stranglehold in some areas than others, cramping such independent mindedness as clinicians might otherwise have been inclined to exercise.
I hope you do well on the new treatment. If you don’t, you can switch up - goodness knows you’ve made your views clear enough (and bravo to you for that - it’s not easy). That might yet come in useful. Definitely not wasted effort.
You have to advocate for yourself in this game – that’s something I have learned over 25 years. Sometimes it bears fruits and sometimes it doesn’t, but it’s always worth the effort of trying.
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Hi Alison
I only agreed to tecrifedra as felt I had to start something asap,
I haven’t given up yet though, I’m trying to word an email that I can send to neuro secretary
(Wish I listened in school)
Thanks
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Received a letter from my neurologist today from our meeting the other week , states in it I’m unable to go on tysabri as I’m outside the nice criteria
Can I do anything about this ? Are they just guidelines or set in stone ?
Thanks
I’ve never tested the NICE criteria. NICE = national institute for clinical excellence, or something like that and as I understand it, govern what the NHS is prepared to fund .
I’ve never tested them but am sorry to say that you might have a fight on your hands to overcome NICE criteria/ guidelines and, this is pure speculation, if anything went wrong and the hospital/ neurologist didn’t follow NICE they could be in trouble
Hi Hank
Thanks for quick response
When you say fund do you mean just the cost of the dmt ?
Or is it the criteria my neurologist has to follow? Ie I need to have further relapses?
Thanks again
They might be referring to the NHS England treatment algorithm, available here:
But you could check and ask for a copy of the guidance they are referring to - they should at least give you that. Then you can read it and see if it offers leeway for challenge in specific cases.
I think many neurologists regard these guidelines as outdated. They (surely) have an overriding duty to consider the needs of the individual patient in front of them - as well as overall cost.
You might have a look at this article, which is critical of the guidelines:
Ask them about the ABN - Association of British Neurologists - guidelines.
I’d also get in touch with Dominic Shadbolt if you can find his contact details - he is well-versed on this issue I think.
Some more information on how neurologists view the treatment algorithm here - but bear in mind this dates from 2018 so it is also out of date now.
Other views and links to relevant articles here - again, this is one neurologist’s view, other neurologists might not agree - I have no idea who is right on this one!
Have you looked at whether you are eligible for clinical trials, which might be another way to get onto different drugs? Just a thought.
But my guess is that if your local hospital really thinks higher efficacy DMTs are not right for you, your main chance would be to move to another hospital trust if you can. You could try the legal route, but it would undermine your relationship with doctors in years to come (could really backfire) and I doubt you’d get much backing given the Crohns issue.
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Hi leonora
Blinking heck your fast with all these links 
I’ve tried to contact Dominic Shadbolt through his YouTube channel he replied asking me to email him which I have done but had no reply
I’m going to print off some of the things you’ve attached and do both an email and written letter I think
Also tried the attack ms trial which uses trysabri as a first line dmt but they emailed me back stating trial has been paused until February next year
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I’ve got spms now, and all of the associated joys😉 I am catheterised permanently but my bowels are probably the biggest daily frustration that I have to put up with. If I’m not constipated then I’ve got diarrhoea, my carers come four times a day, so if I poo myself in my wheelchair I am sat in it until the next visit. As long as The next visit is one with two carers because if it isn’t then I have to keep waiting. I have to choose to either have lunch or get hoisted onto the commode, because I only get a 45 minute visits from the carers at lunchtime.
If I could get a stoma now I would. When I was still rrms there were very few treatments, so if I was back where you are I would take the risk. The best case scenario is that delays any disability.
I am absolutely no expert but from what I understand NICE sets Guidelines and criteria for just about all treatments provided by the NHS and issues volumes and volumes of documents.
I once did acFuture Learn course on the use of QUALYS which NICE use in deciding whther or not drugs should be funded through the NHS. QUALY = quality adjusted life years . Basically is a drug going to lead to increased life expectancy of quality . I recall some totally bizarre algorithms for use in deciding whether or not it’s an improvement in life quality. Including whether pain was tolerable, severe etc with absolutely no guidance on what is meant by severe . At the end of all the calculations a figure is reached and if it below or above a certain number then the drug is /isn’t provided by the NHS. If you are thinking of delving into the world of NICE and especially QUALYS then - good luck!
See links on NICE and MS (and good luck ploughing through it all)
Hi Hank
Thanks I’ll have a look through 
Do you know if mental health plays apart ? This whole situation is affecting mine so might mention it in email
I think that is a good idea.
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Hi Shay, if you mean does mental health play a part in the QUALY decisions then I just don’t know. To be honest I can’t remember that much about QUALYS . I think there might be different sets of measures for different types of treatments.
Im guessing that QUALYs will have been used in the recent decisions about Alzheimer’s drugs - when the decision was that the costs didn’t justify the increase in the number of life years nor the improvement in the quality of life .
Some explanation of the world of NICE