Hello everyone,
I hope you are all ok. Thank you for reading!
I was diagnosed with MS today and have been advised that I will be able to have MDT. CD20 drugs have been mentioned to me and also ublituximab and others. It’s all very confusing. Has anyone got experience with these drugs? I will have to wait what the panel recommends so have a bit of time to think about things. I am also thinking about which vaccines I should have before starting treatment. Thanks in advance!
Hi,
Sorry to hear about the diagnosis. I’m guessing this is relapsing-remitting MS?
It’s good news that you can get a disease-modifying treatment. I know there are quite a few options and it can be a lot to take in.
You need to think about what you want from your treatment. Where you want to be in 15 or 20 years time? My understanding is that starting high-efficacy drugs early in the disease course leads to better outcomes in the long term. So ask your doctor/nurse about this.
MS relapses are something you don’t want, obviously. They can get better over a period of months if your MS is “relapsing-remitting”. But some relapses do leave permanent disability. Once your brain is damaged, it’s hard to reverse that. I think this is why it can be a good idea to prevent the damage in the first place, by taking a high-efficacy drug.
The alternative approach is to start with a low-efficacy drug and to switch up if you get relapses. The problem with this option is that you may get irreversible disability in the meantime - so it’s taking a risk. That’s why this route tends to leave people more disabled in the long-run, though of course you might be lucky. See what your MS team think.
It is also true that in general, high-efficacy drugs have more side effects. All drugs can have side effects. For example, the paracetamol patient leaflet says it can cause swelling of the throat and breathing problems… you have to know how common the side effects actually are. And then weigh up that risk against the risk of irreversible MS disability: problems with walking, balance, bladder control, eyesight etc.
In addition, everyone is different. Once you start on a drug, you will be monitored, especially in the early stages. If you do get bad side effects, they can switch you.
You say they’ve mentioned CD20 drugs. I’m on kesimpta/ofatumumab, which is one of them. I’ve been on it for 1.5 years. No MS relapses since starting. Side effects: flu-like symptoms for a couple of hours after first dose, headache after second, since then no side effects.
Once you have made your decision on how effective a treatment you want, you might also think about other things.
For example, would you be able to go into hospital for treatment if it requires infusions? Would you prefer to learn to take your own injections at home? etc.
Lastly, some people want to start a family - that may also be a consideration.
For more info on drugs, can I recommend the “MS selfie infocards”, if you can find them online. https://docs.google.com/presentation/d/e/2PACX-1vSgnpjPVx11I2UyHCskTGxDwq5wwknFe_W9uAylr_gwTJxUJmPzlVNQQCUMhU-CH0q60a5DQIX4_PFT/pub?start=true&loop=true&delayms=5000&slide=id.g2261c1c5720_0_454
The MS Trust also has an MS Decisions Aid, to help you compare drugs.
I know it’s a lot to take in. But it is good that they ask your opinion!
On vaccines, your MS should mean you get invited for free covid and flu boosters. Depending on your vaccination history, you may need other things before you start your DMT. It’s good to get these done as soon as you can, but your MS neuro/nurses should tell you exactly what you need.
Hi Leonora,
Thank you so much for your kind and helpful reply. It is much appreciated.
Thanks again,
Ruth
Hi there, I can’t add much to @Leonora good reply. I expect that when you next see your neurologist you will be given a short list of drugs to choose from - and some time to read through the options when you get home. In the meantime as you say it’s all a lot to take in so spend some time reading up on the pros and cons of the different DMTs and learning about MS in general ( I’ve been on one of the very early DMTs - Avonex - for around 19 years now . I seem to be doing OK/ not bad on it but the newer ones are a lot more effective