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How Immunosuppressed do you become?

Hi,

I’ve been recently diagnosed with MS, and currently researching DMDs. I have a number of concerns and questions about immunosuppressants. I’m not very knowledgable about them and was hoping someone from on here would share their expertise or experience about it. My questions are:

  • Do DMDs completely shut down your immune system?

  • Do you basically have a hard time living because of frequent infections?

  • Are those infections always a death threat since you don’t have much of an immune system?

  • Do you get classic symptoms of an infection like a fever?

  • Can you live a normal life on them, aka travel to new countries where new kinds of bacteria will exist, new foods, new environmental factors?

  • Can you get surgeries on them aka something like plastic surgery or beauty procedures?

I know it’s a long list, but I already get infections quite easily for some reason, thus the freak out. I’m scared that I’ll constantly be worrying about catching something, viral or bacterial, then being in a hospital frequently on IV antibiotics. :frowning:

Hi Hollow,

This is a subject very close to my own heart at the mo as I have just had formal diagnosis and Neuro wants me to go on Ocrevus asap.

I am very worried too about having a suppressed immune system and have been doing a lot of reading of scientific type articles on the subject - and have terrified myself in the process!

I can’t see how travel abroad would work either.

As I understand it, some DMDs suppress just certain bits of your immune system, and I think some shut down all of it. This worries me, as of course, although it is believed to be an overactive immune system that causes the attacks on myelin, isn’t it also our immune system that attacks cancer cells etc as well as infection??

So I, like you, will be interested to hear anyone’s opinions as to how much they have noticed a difference in their day to day health re. viruses/infections etc.

Sorry, not much help am I !

This isn’t strictly relevant as I am somewhere in the middle of a diagnosis of MS but I’m immunosuppressed for another health condition so I can tell you my experience in the context of that treatment. I’ve literally started with my first cold today since I started the meds in August last year. I usually have numerous chest infections and colds during the winter. But I had none this winter just gone. I had a flu jab which I think will have helped. What I think is happening is that my immune system is so used to attacking itself that when it has been turned down it is actually able to work more effectively. That is just my opinion though. When I started the meds I was really paranoid about being out in public and I’d carry antibacterial gel everywhere, however 've just come back from a camping holiday and even went swimming. The flipside though is that I’ve only started with trigeminal neuralgia since starting these meds and that led to where I am now, with an MRI, LP and the beginnings of a diagnosis of MS. I think this is a coincidence however as I will probably be put on other immunosuppressive meds once it’s decided if I’m to be treated at this time. This type of treatment is scary and you should research before starting but you are monitored closely and can come off it if it doesn’t suit you (or you can with the type I’m on anyway)

Hello

Not all DMDs are immune suppressants. In fact most are not. Although some have potential side effects that can lower your resistance to infection or viruses.

Have you looked at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid ?

There aren’t a load of drugs that ‘completely shut down your immune system’. And you are certainly not at risk of death because of a DMD.

Equally, most DMDs don’t mean you have to live your life in a bubble, avoiding life, other people, travel or fun.

What you perhaps need to do is discuss the various options open to you with your neurologist and MS nurse. Talk about the infections you currently experience, the options open to you, possible side effects and which drug(s) would work best for you and your lifestyle.

Meanwhile, stop worrying that a DMD is going to kill you. In all likelihood it won’t!

Sue

I’m on Ocrevus - only started in April though. I do worry about my lowered immunity but don’t live my life in a bubble. Have been on busy public transport and attended a packed concert since starting. Do wash my hands more and try to avoid sick people and touching my face. It’s all about putting things in perspective though - life is full of risk.