Hello everyone,
I hope you are OK. Thank you for reading.
I have been diagnosed with MS today and I have been told that I will be able to have MDT. CD20 and medicine names like ublituximab have been mentioned. It is all very confusing! Does anyone have experience taking these types of drugs? I am still waiting for a recommendation from the panel so I have a bit of time to think about things.
I am also thinking whether I should have any vaccines before I start treatment?
Thank you for reading!
Hi @Ruth2, so sorry to hear about your diagnosis - hope you’re going super gently with yourself, never fun to have anything wrong with your health.
Re: vaccines, I’m going on a DMT soon and took the pneumococcal as well as a COVID jab. My GP reached out to me to book in pneumococcal, and an MS nurse gave me a list of clinics near me to book in the COVID. FYI - worth checking if you need extra paperwork for the COVID vaccine (I needed something called a PSD form, but the MS nurses were fab and arranged this, so just ask them/your medical team!).
Worth thinking about if you’ll be going abroad anywhere soon which needs a vaccine - I’m not so didn’t look into this too deeply, but mentioning in case.
The medication choices can be really overwhelming and confusing, so take your time with it all. No rush to understand everything immediately - I definitely took a couple of weeks to read and mull!
Dear Ruth, I am sorry to learn of your diagnosis. Whether and (if so) for how long you’ve seen it coming, it’s never nice news to get. In my own case I remember a bit of magical thinking going on in which the neurologist would rush in and say it’s all been a mistake and there’s nothing the matter with me after all. Well, at least now you know and you move into a new phase of starting to adjust to the news. It’s not a very fun time, and the best thing I can think of to say about it is that it doesn’t keep on feeling this bad. Normal life does reestablish itself, even if we’ve had to slightly redefine normal.
As for disease modifying treatments, I’ve been on one or another for more than 20 years but not the class you’re being offered. My own experience has convinced me that getting on the most effective DMT available to one is a very good plan, so I am glad that you are headed down that road.
I’m going ot attach a link to some information cards about the various DMTs and it’s the best thing I’ve come across to get an overview of their characteristics. I wouldn’t recommend rushing into studying it before you feel you want to - it can all be a bit overwhelming. When the time feels right it will give you a coherent way of comparing the various drugs and their pros and cons. I have found it very helpful.
Good idea to get as up to date on your vaccinations as soon as possible in advance of your DMT.
The guidance is a little complicated and confusing.
There are rules on which vaccinations you are eligible for. The main factor is your age but there are special categories for the state of your immune system. The impact of some DMTs is to change the state of your immune system which means you may qualify after you start treatment! Similarly some vaccinations are less after you have started your DMT.
In essence try to find which vaccinations you are eligible for and which you might be eligible for and talk to your GP and get them asap. It may be easier after you know which DMT you are going on as the impact will be different.
Also some DMTs have extensive blood tests before commencement that may identify requirements for treatment or vaccinations.
I sorted out my shingles vaccination as I was in the group that missed it when they brought the age forward. I am about to investigate the flu and COVID winter vaccinations before I have the second year of Cladribine as it all got a little confusing last year and I prioritised restarting a new DMT after being left in limbo when I was taken off my first for low lymphocytes.
Hi,
Thank you so much for your kind and helpful reply. It is very much appreciated.
Many thanks,
Ruth
Thank you so much for your helpful reply and the link - so much appreciated!
Many thanks,
Ruth