Drug Therapies

Hi Michael,

Thank you for keeping us updated! It is so interesting to see how this new drug is going for people, I am thinking about trying it, so maybe in the future I will.
Keep posting Michael, a lot of people are interested in your story.

Best wishes and I hope this round is encouraging for you.
Take care
P

Update on my previous postings on ocrelizumab. My son had his 5. round of ocrelizumab in September. MRI is stable since starting ocrelizumab 2 years ago. His remaining symptom is some numbness in his fingertips. No sideeffect from ocrelizumab, not even during infusion. Combined with a helthty lifestile, i hope he is stable the next 60 years.
Wish you all well
Inge

Hi Inge,
That is certainly fantastic news for you all! I hope he always continues to do so very well. Have the Drs told you how long he can stay on Ocrelizumab? Im just wondering if it is a long term med thats all.
Best Wishes

Pipi

Hi Pipi
So far there is no stopping date for ocrelizumab. We actually discussed that whit his neurologist. In several years, maybe the intervals between infusions can be longer, but they will have to monitor B-cell.
Regards Inge

Hi Inge,
Thank you for keeping us updated, it is so interesting to hear your sons journey.
Best wishes
P

Hi everyone really need some help with this one. First time poster, newly diagnosed. My husband and I are trying to have a baby- today neurologist (a highly regarded professor), recommended Ocrevus, knowing we are going through IVF. Said it has no impact on pregnancy and safe to use. So we happily left his office then looked at the brochures and did some googling (TGA website etc), and it clearly states not to use this drug before, during or after pregnancy. Some very serious effects on unborn baby are possible. Studies on pregnant monkeys on this drug have horrendous consequences on unborn baby.

Do we trust the Neurologist? Or do we trust what is published? I know this drug is fairly new, but are we being used as guinea pigs?

It’s so confusing and you just want to do the right thing.

Update om my previous posts. My son just had another ocrelizumab infusion. Since he started ocrelizumab 2 1/2 years ago everything has been stable. Scans are stable and no new symptoms. No symptoms during infusion. Combined with OMS I hope he will stay stable.

Wish you all well
Inge

Another update. My son just had ocrelizumab infusion again. He has now been on it for 3 years. MRI is unchanged in those 3 years. Only remaining symptom is some numbness in his fingers. Combined with OMS he is doing just fine.

Wish you all well
Inge

Short update. My son had his infusion on March 9. Still doing very well. No change on scans or symptoms since he started ocrelizumab 3 1/2 years ago. Wish you all well.
Inge

Short update. My son has been om ocrevus for 5 years now. His condition and scans has been stable in that period. DMD, diet, sport and meditation gives him the basis for living a normal life with job and friends.

Wish you all well
Inge