Last reply 3 weeks ago
3 different treatment in 6 months

Hi I AM 21 years old, I found out in March this year while 20 weeks pregnant I had MS. From 12weeks onwards Through pregnacy I got double vision I was bed bound I had no balance and alot more concerning problems. I have no MS in my family so was a shock! I had a CT scan that showed nothing, Lumber puncter that showed my bands wasn’t matching. I have now had my 5th MRI this week since March. My baby is here now as during pregnancy they gave me Copaxone as it was the only DMT safe for my baby but during the end of pregnancy showed I had new activity at the end of July so I started ocrelizumab when I had my baby. My first part of the drip was given 19th Aug my second part was 2nd of September I had another scan on Wednesday that showed I was in a relapse my Dr said ocrelizumab should of been working for me now so he has given me steroids and is looking to start me on natalizumab in the next few weeks. He is just concerned how close together it will be from my last infusion of ocrelizumab as it was only 2 weeks ago. Has anybody had ocrelizumab and natalizumab so close he is going to talk with other consultants first to see if I would need a kidney dialysis with it not long been since my of her treatment as he has not given two different treatments so close together. Has anyone else had these treatments or similar so close together? Thank you 😊

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mlgilber1
3 weeks ago

Congrats on having your baby, but I’m sorry you’re not doing well. In my opinion that just seems like a lot. I’ve always been told it can take up to two years to see if Ocrevus is working especially since it takes time to kick in after the first two half doses. Also, it’s not uncommon for a woman to have a bad relapse after giving birth. I’d maybe get a second opinion because you may want to give the Ocrevus more time. Did you get the Ocrevus this aug and sept? It takes at least three months I’ve been told to have an effect after the first two doses and up to two years to see if it’s effective. They didn’t even do an MRI until 3 months after starting. My MS was considered aggressive and I relapsed a month after starting Tecfidera which they said it was still too soon to know for sure if the Tecfidera was ineffective, but they agreed I needed a more aggressive treatment so I started the Ocrevus and now my MRIs for once have been stable with no new or active lesions. I honestly would really talk to your neuro and probably get a second opinion. Good luck


mlgilber1
3 weeks ago

The Ocrevus hasn’t even had time to kill off your B cells yet which is what it’s meant to do. Do you see an MS specialist or just a neurologist? Seeing a MS specialist does make a difference. Also, there’s washout periods usually between switching MS DMTs, but there is no way he can say the Ocrevus should’ve been working by now if you just had the second half. There is a FB group called Ocrevus with a lot of great information on it if you want to check it out.


arya
3 weeks ago

Hi, I strongly agree with @mlgilber1 !
Try to ask a second opinion from another neurologist, this is a big jump.
Congrats for your baby!!!


itsmewithms
3 weeks ago

I had what they said was optic neuritis when I was pregnant and they hesitated to do an MRI while I was pregnant as they were not yet proven to be safe for the fetus and my symptoms were curious but not really impacting my life. I had a small spot in my vision with a strange checkerboard pattern but could still see well enough to drive, etc. In a recent appointment with some top neuros they said that was really likely an optical migraine as it isn’t really MS Optic neuritis.

Regardless it went away in my 3rd trimester. It sounds like MS symptoms often do. So much so that they were looking into what wonderful hormones the body emits in the third trimester to see if they can use them to manage MS.

Not sure what week you are at in your pregnancy but for me the third trimester was the easiest for me in symptoms. Then I unexpectedly went into labor one month early so it was cut short 😉 she was born at 5lb 7 oz so a bit light for a woman in the US/Midwest with a german swede background but she was healthy for a baby born 4 weeks early and didn’t need anything special. Went home in 2 days from the hospital and by 2 years old had caught up to all the growth charts. She is now a Sr in highschool and has always been healthy.

I was officially diagnosed when she was about 2 and until recently was pretty much symptom free.

Good luck and congrats!


keepsmyelin99
3 weeks ago

Hi @cortney_craft 👋🏻
I’m so sorry to hear you’ve been having a relentless year. Many congratulations on becoming a Mum! You’re so strong to have faced all this AND given life and love to a brand new person 💕
I don’t have any experience with any treatments as I’m fairly newly diagnosed myself but if you ever fancy a chat, feel free to message me – I’m 20 years old.
There is a woman on YouTube called Rhian Gibson that you might like. She uploads about her experiences of living with MS and becoming a Mum. She actually found out she had MS whilst pregnant with her first baby. Hopefully this has helped you a bit xxx

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