Risk vs reward... ocrevus

[Lyssi458]

Good morning everyone! Hope everyone is doing great and had a great Father’s Day.

I had a question, as the post reads I’m honestly starting to question is a weak immune system from the ocrevus is worth the reward. I forgot which stage of ms I have, but my neurologist said it’s aggressive so that’s why he put me straight on ocrevus.

I’ve only had my first 2 half doses started in April. But I have been sick almost every month! A cold makes me feel like I have the flu, and I have 6 kids. So I’m pretty much prone to sickness 🤷🏻‍♀️.

I was just curious on everyone else opinions on this, it’s hard speaking to my non MS friends. They don’t understand how crappy a lil cold makes me feel. I almost feel like I rather have my double vision then this. I was still able to do for my kids atleast. 🤧🤧😷😷

Now I have this nasty cold and I feel like death. 😫

[greaterexp]

I'm sorry you're struggling with the infection side of Ocrevus. We're reading so many great stories with not too many about the infections. However, we are all different, and it may not be the best choice for you. You're at a busy time of life! I'm sure you'll talk with you doctor about this soon so that you may come to an informed decision about your options and your personal situation. Would you let us know how you're doing and what you decide?

[Lyssi458 in reply to greaterexp]

Absolutely, yes a lot of good post about the good but not so much the ugly. And it’s not instant so you kind of forget about it.

It stinks 😫

[falalalala]

I'm sorry you're not feeling well.

Thank you for posting this though as there is always another side to things.

[Fancy1959]

Lyssi458, it's Fancy. Each and every DMT has its own risks associated with it. It is up to you to talk to your neurologist to determine what risk you are willing to live with. The only risk greater than not being on a DMT is your MS. Without a DMT to keep your MS in check you will allow it to run amok in your body and do damage that will haunt you for the rest of your life. Once disability has occurred it is very seldom that we can get the damaged body regions back to normal. Once MS attacks your Milan your central nervous system will have difficulty getting the signal your brain sends out to the affected region thus creating disability and body regions or parts as simply don't work like they used to pre MS.

Many DMT affect your immune system since that is the part of our body natural response to a foreign Invaders that the MS Targets and get it to not recognize your normal central nervous system Milan and connections. Therefore it allows our own immune system to attack our own body and to destroy healthy connections between our brain and our central nervous system via power Milan. It simply takes an adjustment on your part to help to Vamp up your immune system in ways that work for you. For me it's as simple as using saline nose drops whenever I first feel that slight possibility that I'm coming down with a cold or respiratory infection. The saline nose drops contain nothing artificial just sailing and salt that rinse out your sinus area and throat best eliminating bad bacteria before he has a chance to really take hold. I ever maybe one cold every other year while my husband who is a healthy 61 year old will typically have at least two to three per year. I'm also very conscientious about hand washing and doing preventative vaccines like the flu vaccine to eliminate more aggressive forms of infection.

I hate to hear you having such negative results from the Ocrevus infusion like feeling poorly Etc and I would once again encourage you to speak to your neurologist to see if they can offer any suggestions. Common Sense tells you to rest as much as you can, haha, like that's possible with six kids but do what you can to rest your body to allow it to heal. Pump the cranberry juice and other forms of natural vitamin C into your body by eating a lot of oranges and fruit. Hang in there and don't give up because I have had three consecutive MRIS that show absolutely no advancement or enhancement in my MS. That is something that had not have them for over 5 years prior to me getting on ocrevus. The only thing I could wish for from ocrevus is that it was developed 5 years earlier so that I would not have occurred so much disability well on less effective DMTs. The quality of my life would be much better if it had been around sooner and I would not have to live with my somewhat severe disabilities for the rest of my life. I pray each and every day that they find a way to fix the disabilities if not to cure the actual MS. I'm glad you asked your questions and it's nice to meet you. Always remember together we are stronger! Until we speak again take care of yourself. Fancy.

[Jesmcd2 CommunityAmbassador]

Hi Lyssi458 have you mentioned it to the Ocrevus ppl? To see what they say? And call or email your neuro.

After mine, I was exhausted for 5-6 days afterwards. This DMT might not be the best for you.

Talk to your health care team! And feel better soon! 🤗💕🌠