My mom was diagnosed with Progressive MS in the late 80's. I was there with her through all of the stages. She has been in a wheelchair and can't walk for the past 20 years! So I'm writing this post to get some advice from all of you out there..... She just got her first dose of the drug named Ocrevus..is there anyone else that is taking this drug? There is no one that has posted about how they are feeling....has it helped them....is it working for them??? Any information would be greatly appreciate.
Hi, I am going to be starting Ocrevus as soon as everything is approved (hopefully in the next few weeks). I am sorry I don't have any advise to give you about it, but I will reply about my experience if that will help you? All I do know is I am looking forward to this hopefully finally being a drug my body will tolerate. I was told after the first 2, it's every six months after that. Awesome! Best to you and your mom and good luck:)
My 45 year old husband was diagnosed with PPMS in January and started Ocrevus in March. November will be our second infusion. We've noticed a few things that may be improvements, but we are still cautiously optimistic realizing it's not a cure and it may take several infusions to see a slowing of the progression.
I too have PPMS. I was in the clinical trial for the Ocrevus in March and got 2 doses and then the FDA approved it and in September I will get my next infusion. I am not seeing a lot of improvement however I am not getting any worse. I still use a cane. my walking speed increased by only a few seconds but since I am not getting worse that is a positive sign for me. it is a very slow process from what I know. tell her to be a patient which I know is hard as we want to get better overnight! this drug works very slow.
I have been on Ocrevis since the beginning of 2012 through the case study. I have relapsing-remitting MS. I have not felt any side effects from this medication. I have had no changes in my MRI scans since taking this medication. I am currently on this medication and at this time have no reason to not continue. What I have heard from the liaison of the medication is that it is reducing brain lesions significantly effective in the 90th percentile. This drug is the first course of action for those with primary progressive MS. I have seen stories of people getting up out of there wheelchairs and walking their pets around the block. I hope this helps. Best of luck.
I have RRMS and I am not on Ocrevus, but while I was getting my infusion last month (I'm on Tysabri), I was sitting next to a lady with PPMS who was getting her second infusion of Ocrevus. I asked her some questions because I don't know anyone with PPMS. She said that she was able to walk about 25 feet, and mostly used a scooter to get around. She said that the biggest thing she had noticed after just one infusion of Ocrevus was that her feet had relaxed a ton. She said that for a few years, her feet had been really stiff and her toes curled under, causing a lot of pain. Since starting Ocrevus, her feet had relaxed and flattened out and she was much more comfortable. Hope that helps!
I just had my first infusion of Ocrevus. At this time I haven't felt any different. Second dose is in February. It would be awesome if someday I can get up from my power chair and walk!! So I'm holding onto to Hope which can only come from the Lord!! Proverbs 3:5,6.
Art Rena, It seems too early to say that those who have received Ocrevus have improved. If I understand the literature about Ocrevus, there is a 25% + or - decrease in progression. Please let us know if Ocrevus helps your Mom.
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