Hello everyone!! Has been long time!! But finally I got a different insurance and different Dr to treat my MS!! After having problems with Kaiser and Dr told me I don’t need treatment because I have no symptoms and she treated my pain with 300mg of gabapentine which didn’t work for pain… she didn’t order my annual MRIs instead she send me to the ER so they can figure my pain. I was for 2 years with pain and at ER they did a CT scan and was kidney stones 😒Dr said last MRIs my lessons were good and no new ones in fact one disappeared… so new doctor did new MRIs and found new lessons and wants me to start on OCREVUS. I was reading some of the side effects and I’m not sure if I want to do it 😢 I do want to be a mom I’m 31 years old and been married for 3 years so I need to hear experiences from people that are on OCREVUS, also my insurance don’t cover fully the cost… how much do you pay? I just want to have an idea to see if I can afford that! Thanks 🫶
I am not sure about Ocrevus : Hello... - My MSAA Community
I am not sure about Ocrevus
Hey Marlennewilliamson -- I'm glad you were able to finally see a new Dr for your MS!Sorry to hear it was kidney stones making you miserable for so long!
I have never been on that DMT, but I do know a lot of manufacturers have assistance programs that might be able to help you pay for it.
There are quite a few here on Ocrevus, so hopefully they will share their experiences.
Thank you 🙏 yes I got a assistant program but I have to pay first before sending the bill to get reimbursed and there is my problem I been seeing that the medication can cost $75k-100k which I would have to pay 11k-15k and I don’t have that amount it’s so crazy!the insurance or hospital haven’t been able to tell me what’s the amount I’ll have to pay which sucks they only told me 15%
If you decide to try Ocrevus, the company that makes the medicine might be able to help too.ocrevus.com/patient/financi...
Try contacting Ocrevus Access Solutions 800 888-2882 and speak to a patient navigator. Hope this helps.
thank you so much!
I had a copay assistance card from the drug company. I can't remember the name of it now, but if you look online you can call and talk to them.
Yes I applied and I’m approved! Do you remember how much have you pay? Because what I understand is that you get the copay assistance card but you have to pay something and then get a reimbursement form ? Or I guess I’m confused 😐
I did not pay anything, the card covered the cost. You give the pharmacy the card information at the time your medication is ordered. They will confirm the amount with you if there's anything you owe before they order it.
That’s why I’m confused and thank you so much for your response, so I’ll be getting a card or just with the ID info that I have is enough? Cuz is so much information and my brain is not holding everything so I thought I have to get the infusion, pay the hospital and then submit the application to the assistant program to get reimbursed. So my problem is I don’t have 15% of the cost for OCREVUS 
I'm sorry, I was replying about home infusions. For hospital infusions, the copay program communicated with the facility and I only had to show up for the treatments. It was not a reimbursement program.
I have a $5600/year deductible with my insurance. I never paid anything up front. The doctors office/infusion center has the copay assistance info and submits what is called the eligibility of benefits (EOB) to the copay people that shows what my out of pocket costs would be and then it is paid through the card. I have never paid more than $100. I schedule an infusion early in the year so that my deductible gets met and then everything else is covered the rest of the year. One year I needed a hysterectomy and would have had to pay the $5600 if it hadn't already been met. My prescriptions come out of the same insurance pot so those are free too.My side effects have been very mild. I have had no new lesions since 2016 when I started Ocrevus. You can try it and change later if you don't like it. The current thinking is to start with the one of the most effective DMTs first. Starting with less effective ones can lead to new lesions which in the long run lead to more disability. Did they consider Lemtrada for you? It may require a longer wait to planning a pregnancy though.
Ocrevus has been the first option since I got new lesions and Dr wants me to control that ñ. Thank you so much to share your experience!
I'm 32 I was diagnosed in 2019 started ocrevus then. Had my third child but first post diagnosis in March resumed 7 weeks post partum. Was told wait 4 or 5 months after infusion to begin trying and that ocrevus provided good protection during pregnancy and no washout period
Marlennewilliamson Lots of info to unpack around DMTs, insurance, and other stuff. Here is my personal experience:
- Genentech (now Roche), the manufacturer of Ocrevus, might be able to help you. I'm lucky in that my insurance pays for the medicine once approved. I have a co-pay for the hospital cost of the infusion and it is covered by Roche. So my payment for Ocrevus is $0.
The Ocrevus website (ocrevus.com/) has a financial tab on how to ask for help if your neuro's office is not connected with them. I'm doubly lucky in that my neuro's office takes care of it all - insurance approval, Ocrevus payment, etc...
- side effects: In my case, I've had none. I'm able to drive myself to the infusion center and back. The next day, I tend to be hyper but it's because of the steroid added to the infusion.
- Ocrevus or other DMTs: when I got dx in 2018, my lesion count was "severe". The neuro recommended that I get on the most aggressive treatment available at the time that my body could support. It was Ocrevus at the time ( there are a few more options available now).
- Effectiveness of Ocrevus: I'm glad I went for it as at the follow-up MRI 6 months later, I had no new lesion and no active lesion, which is exactly what Ocrevus is intended to do. I still have some mild MS symptoms but this is it.
- Long-term Ocrevus: my neuro is very diligent with Ocrevus. A blood test is always done prior to ordering an infusion. In my case, Ocrevus destroyed a lot more than B cells, and the return of my immune system to a reasonable level is slow. To avoid being too immuno-compromised, I now only get a 1/2 normal dose every 8 months instead of 6. This kind of makes sense to me as I am a petite, low-weight person. I know they are doing research right now to adjust the standard dosage based on different body sizes.
I wish you good luck
Thank you so much!! This makes me feel much better so thank you for sharing!
I have been on ocrevus for 3 years now. Zero side effects and no new lesions. I feel really good on ocrevus. Just make sure you get pre meds, benedryl, tylenol, steroid and you'll be just fine. I am a huge chicken when taking any medication so if I can do it you can.Also, I have never paid anything with ocrevus. I got on the co pay card and the med was free.
Good luck
Jenny
I have been on Ocrevus for 5 years now I’ve had no problems with side effects. It does leave me tired for a couple of days With my insurance I only pay $40 each infusion. I’m not a woman wanting to have children so I can’t help you on that. I would recommend Ocrevus for treatment. I wish you the best with your decision.
I've been on Ocrevus for 6 years and my insurance pays 80% which left 20% to me. But if you don't make more then $75,000 a year, Genentech will cover the 20%. I've never paid a penny for Ocrevus.
I have been on Ocrevus since 2019. For the first year or two, I felt tired a few days after the infusion. I also had stomach symptoms after the infusions. Now they give me IV Pepcid before each infusion, and those side effects are completely gone. Currently, I don’t have any side effects. If you read the package insert or information on most any drug, you’ll see lots of unusual or scary potential side effects.
When I was 31, I wish there was a highly effective DMT to consider.
I've been on Ocrevus for 3 years with no adverse side effects. For a couple of weeks after the infusion, I feel better, probably because of the other meds they give you before they start the infusion. With Medicare and BCBS I pay nothing, but at your age I'm sure your situation is quite different.
Hi, Marlenne! Next week, I will get my 6th Ocrevus infusion. No side effects, but the steroids keep me awake that night. (maybe ask for a half dose of steroids, if you have to work the next day!). Your pharmacy should put you in touch with the manufacturers of the drug. It may have changed hands, but it used to be Genentech. They have a patient assistance program you can sign up for. The most I have paid has been $119 once for the supplies used and the steroids.
Without the assistance program, I could not do infusions! Keep us posted! Best wishes!
Hi, I have been on Ocrevus for four years with no side effects. I have no problem with the pre medicine and no problems afterwards. So far, my insurance has paid for it all. I do have the Ocrevus co pay card but when I go to the doctor's office for my infusion and mention my card, he or she looks at it and gives it back. No questions. Good luck and hang in there. 👍
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I haven’t received my card and I contacted the program and they told me to send the explanation of benefits and then they will tell me how much they will cover so I’ll try it and see what happens I have feith and hopefully I don’t get any side effects like you thanks for sharing!!
I’m so glad you’re working this out! Incidentally, I opted not to have children because of my MS, and that often makes me and my husband sad. On the other hand, my friend also has MS and she had twins and is very happy now, I think.
I hope that you are able to make the best decisions regarding your care, and I am relieved you got a new doctor after reading your story! I’ve never tried Ocrevus, but it sounds great, and after the shots that I did for about 20 years, an infusion sounds like a dream! I take a pill now.
Wishing you hope and healing, and happiness. God bless!
Thank goodness you switched doctors and got an MS doctor that was serious about this dreaded disease. Ocrevus offers financial assistance and I didn't pay a penny for my Ocrevus when I was on it. Then you have to worry about getting to a facility that will infuse you for free because infusion runs normally about $18000 per infusion roughly speaking. Not exactly pocket change or something we can work into our budgets. I had zero side effects while I was on Ocevus. So take the side effects with the grain of salt because they're different with each and every person. Remember, most DMT's have side effects associated with them. So to treat your MS, you run the risk of running into some problems with the DMT. Speak to your doctor about wanting to start a family and see what they suggest. Oftentime MS seems to take a break during pregnancy. I don't know if it's the hormonal changes or what but somehow seems to make it go into a short term quiet period or remission. Several people in the chat room have had babies while actively treating their MS. Hopefully they will contact you and give you ideas or suggestions about what they did while starting or increasing their family. Glad you're back and active in the chat room. If you have any other questions, just give us a shout and we'll do our best to help you. Fancy59.
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