Hello I’m new here.
I’m looking for advice and support. I was diagnosed with RRMS in May 2018 and have been on daily injections of 20mg Copaxone.
My most recent MRI in January this year showed 5 new lesions and my neurologist isn’t happy about this so now wants to put me on Kesimpta.
I am terrified of moving to this drug because of the PML warning as to put it frankly I don’t want to get PML and die!!
I know this might sound dramatic but I’m scared, I have discussed this with my neurologist and he says they do regular blood tests and really recommends I switch.
How regular is enough for blood tests?
How will they know if the medication is reacting with the JC virus?
(if I’m positive which my neurologist said the chances are I will be as 70% of the population are)
How quickly does PML set in?!
The medication has only been used for 2 years so is relatively new. I just really need advice and if anyone has first hand experience of this or can point me in the right direction for research that would be really helpful and greatly appreciated!
Thank you in advance.
Hi R Cull, I’m not on Kesimpta but if you look under the Symptoms and Treatments section of this forum there are a number of posts from people who are on or are moving to Kesimpta. Also I think has been in use in the USA for longer than in the UK and EU, plus I think I has a longer history as use for some other condition in the USA
1 Like
Hi I’m new to this forum my name is TJ, so I have a question why didn’t your doctor try okrvis or rituxin? I’ve never used the newer stuff with the shots or what have you. But my doctor give me a
My neurologist didn’t offer any of those medications, initially depending on the first relapse drugs like Copaxone are used because they are safer but often they only work fully for so long (apparently this is common) then patients are offered something stronger. Rituxan carries the PML warning also as far as I am aware.
From everything that I have reviewed all of the infusion medicines carry the possibility of giving PML or creating PML or causing the patient to develop PML. That’s the reason as to why they always check your brain every 6 months every year or what have you that’s the reason as to why. And I’ve looked because it will be awesome if they had an MS medication or infusion or what have you that does not cause cancer or doesn’t put you in the lead of cancer and does not cause PML. I’ve even looked up if people have ever lived through having PML. Which I was able to find there are medications to help you with piano it’s actually AIDS medications AIDS and HIV medications they help you get through or can help you get through PML but it doesn’t State whether or not there has ever been a survivor. So yeah the medicines that they first give to you I remember them giving me a lot of steroids at first I don’t remember them giving me any MS medications per se I definitely remembered getting steroids and Benadryl pain medicine too and then they put me on okarvis and then because my piece of would reach high markers too early they switched me to rituxin because they had never done a study with okra this and increments of less than 6 months they only did it in 6 month increments, whereas rituxin they did studies on it for 6 months and less time so they know how it affects the body. But that’s normally how things go they will normally suggest your offer or something to you that they believe is best for you.
Hi,
I’m on Kesimpta and my memory of this is that so far there have been no cases of PML in Kesimpta patients, at least in those being treated for MS? You might want to check. The reason they warn is that there is always the remote possibility, given the rare cases on other anti-CD20 treatments that have been around for longer: they don’t want to be sued because they didn’t mention it. But I don’t want PML either - with you on that one - and I don’t feel at risk on Kesimpta. Probably more likely to be run over by the proverbial bus.
The real issue with PML seems to be with other DMTs eg natalizumab, where they do need your JC Virus status regularly. My neurologist was cautious about natalizumab due to PML risk but not at all concerned about kesimpta. Understanding risk is quite hard for us as patients, perhaps worth discussing your concerns again with the neurologist if you get the chance.
The bigger issue is to make sure you get all your vaccines up to date before you start. That means covid, flu, pneumonia. If they will give you the shingles vaccine Shingrex, get that too. Kesimpta does run down your immune system a bit. The main risk you face is more coughs and colds (or UTIs). They did blood tests before I started, mainly to check whether I had things like HIV or hepatitis. Repeat bloods interval may depend on hospital, mine seems to be about every 6 months.
Plus of course, you face the risk of worse MS (mobility problems, fatigue, vision loss, wetting yourself in public because your bladder has gone, cognitive decline)… presumably why your neuro is now suggesting a stronger drug.
I’ve been on this drug since January, not that long. But it’s a piece of cake, very convenient, and thought to be more effective than copaxone. Hats off to you for managing daily injections… Kesimpta is much easier!
1 Like
Thank you that’s really helpful.