Help- Ocrevus with spms?

Ok, this may be a long post because I need to vent and sort through what’s going on.

Background: I’m diagnosed spms and started my Ocrevus journey back in May. The entire summer was spent going through insurance appeals but ran out of them in August. I spoke to Genetech at that time and we got the ball rolling on qualifying for the free drug. Between my neuro’s asst and Genetech everything seemed to be going great. I kept a notebook for days/times and a brief summary of the conversations. Fast forward to the end of August when the Genetech rep called to review my case. I had just finished sitting through a webinar for Ocrevus and asked her a follow up question regarding spms. She suddenly got quiet and basically said that since I’m spms that it changed things?!? WTF? She thought I was diagnosed as ppms so I would not qualify for the free drug nor the copay program. Journey over...so I thought.

Just two days ago, out of the blue the Genetech rep calls again and leaves a message about a request from my neuro. I called back and she basically acted like either the conversation didn’t happen or there was a misunderstanding. She’s saying I qualify for the free drug and I need to start looking for infusion centers again.

I’m at a loss. I went through such an emotional roller coaster the entire summer and I came to terms that Ocrevus was just not meant to be for me. I finally started to move on and focus on what I can do for myself...eating better, exercising, going to PT, etc. Now this.

I honestly don’t know how I feel. I don’t know how much I trust that this could actually go through (if I decide to pursue it again.) I have a call into the neuro’s office to see what they can tell me. I’ve also gone back to the drawing board with researching Ocrevus and spms which has been difficult. Adding to all of this stress is the fact that my daughter has had a serious health setback just last week. I’m not sleeping and I feel pressured to hurry up and have a decision made on what I’m going to do if I qualify for Ocrevus again.

Sorry this is so long but I’m trying to sort this out the best I can and would really appreciate any feedback, especially from those here with spms that are on Ocrevus—good and bad, pros and cons.

Thanks for taking the time to read 💐

[RoseySawyer]

I think I would feel the same. Sorry your going through all these emotions and worries. I hope it all situates itself for the good. ❤🌷

[Hidden in reply to RoseySawyer]

Thank you

[Royjr]

Vent on!!! I understand and feel your frustration. I’m not SPMS but I understand. I pray that everything works out for you. Keep us informed.

[Hidden in reply to Royjr]

Thank you, I will!

[Kenu]

Get it in writing ✍️ so if you do it you don’t have them change the rules again! Sounds like a stressful summer 😖. Hope things work out for you 🙏. 🐾 Ken 🎃

[Hidden in reply to Kenu]

I will if I decide I’m going to even try for the Ocrevus again. I think having a positive outlook and really believing the treatment (no matter what it is) is crucial and honestly I don’t think I’m there with Ocrevus at this moment. Maybe it’s just the exhaustion and stress. Hubby wants me to take time and really think about it. It’s just my personality that I put pressure on myself to make a decision ASAP and I can’t let it go until that happens.

[greaterexp]

No one can make decisions for you, but I would take another serious look at Ocrevus, since it's being offered as an option again. It looks right now like it's doing a lot of good for lots of folks. We're with you, whatever you decide. I'm sorry you've felt overwhelmed with so much lately.

[Hidden in reply to greaterexp]

Thank you. Part of me feels silly not jumping on the opportunity but there’s a part of me that is either scared, not sure it’s going to work for me, or worried about what the stress of going on this merry go round is going to do to me. I’ve always felt that if I’m not 100% sure on something then I shouldn’t do it, at least for now. I just don’t know but maybe once the neuro’s office calls back it will help some as well.

[bxrmom in reply to Hidden]

Hidden I hope your neuro's office calls back soon to give you more insight into what is going on and what they think you should do next. I would also ask the company to send you a copy of the written letter of approval to you in the mail. Please keep us updated when you can. Good luck.

Jessie

[Hidden in reply to bxrmom]

Will do, thanks

[greaterexp in reply to Hidden]

I understand! I go back and forth about changing DMTs a lot!

[Kenu]

Just for information I have been on seven different DMT’s thru twenty three years. I have been on Aubagio now for nineteen months and doing great 👍. No side effects and last two MRI’s were stable and no new lesions 🙏. It is oral once a day and is working great for me👍. Remember there are several out there now 🙏😉. Good luck on what you choose to due and keep us informed 👍🙏🐾 Ken 🎃

[Hidden in reply to Kenu]

Thanks for sharing! I don’t know if it’s something that would be covere or recommended since I’m spms. Right now I’m on LDN and have been for two years. Since being on it I haven’t had any new lesions but I feel like my drop foot has gotten worse. Other than that I feel pretty good...knock on wood, lol!

The neuro’s office is closed and no call today. 😏

[Iona60]

So sorry that you are having all this trouble. If the insurance companies only would realize that the stress they put us under makes us sicker and costs them more money. Hoping you will have peace with your decision

[Bygonelines]

If Genentech called you after your neuro's office contacted them then maybe the neuro told them you are RRMS or PPMS instead of SPMS. My neuro has kept all of my medical records stating I have RRMS when in actuality I have SPMS. The reason she does this is because most insurances will stop paying for DMT's if you have an official, on your record, DX of SPMS and she wants her patients to have the option of using a DMT if they wish. She said even Medicare won't pay for DMT treatment of SPMS patients. This is because there are no FDA approved treatments for SPMS. So maybe your doctor does this too and that's why they called you back to say you are covered after all.

I would still make sure that you get it in writing and make sure you request to have help with the infusion center bill as well since that is a separate charge and usually if your insurance is denying the DMT then they will also deny the infusion center. Just something to look into.

Jacqui

[KC0808]

Thank you for posting your situation I’m truly sorry you’ve been put through the wringer and at the same time your information has hit home with me. I am also diagnosed SPMS and my Neuro has recommended I change DMT’s and start on Ocrevus due to the ineffectiveness of my present DMT. I just filled out the initial paperwork and gave to my Neuro on Tuesday I will now contact my Doctor and pass along what you have experienced I DO want to start Ocrevus ASAP and continue to fight this horrible monster called MS. I have heard many good responses to Ocrevus and I really need to slow the progression down.

I wish you the very best and again I thank you for posting information that is invaluable to my continued battle.

Take Care of You 💕

KC

[Tina11762]

So sorry to hear what you are going through but I have been there as well and there is light at the end of the tunnel. My neurologist had explained to me that since Ocrevus has only been approved for PPMS and not SPMS ( which I have ) she was putting PPMS down in order for insurance to cover it. As we all know Insurance companies will look for any excuse not to pay. Your phone call with your insurance company is evidence of that. Unfortunately there is nothing for Insurance companies will look for any excuse not to pay. Your phone call with your insurance company is evidence of that. Unfortunately there is nothing for SPMS so Ocrevus seems to be the best bet. I have been on it for a little over a year and have been holding my own. So my advice to you is play the game with the insurance company and pretend your conversation never happened if you want to continue to pursue getting Ocrevus. Good luck with whatever you do and I hope this helped.

[Hidden]

Thank you all so much for the supportive and informative replies! So far my neuro’s office hasn’t called me back although the Genetech rep said she would follow up with me on Monday. I ageee with what so many of you have said and I will ask to get it in writing.

I must say that I’m kinda disappointed in my neuro for not knowing that I wouldn’t be covered with a diagnosis of spms. His asst worked hard fighting my ins all summer when this could’ve been easily avoided by switching a few letters around in my diagnosis. He’s a nice guy but I’m not sure he’s the neuro for me either. Maybe I should consider a second opinion as another option. No matter what happens I’ve come to terms that this isn’t going to be resolved quickly but I will post the outcome when it’s all said and done.

I just want to thank everyone again for their time to read through all of my rambling thoughts and offer some much appreciated experiences and advise! 😊💐❤️

[mrsmike9 in reply to Hidden]

Personally I hate insurance companies. I've had run ins with them myself. Probably most of us have. I would see what your neuro says before making a final decision. See what they did to make them change their mind and confirm your diagnosis. Say, S as in Sam, not F as in Frank, type conversations to cement it in your mind. Good luck to your and your child. It's hard when your kids have health problems...

[Yooper]

You are in my prayers 🙏. I'm currently going through the same process. I had my one year infusion and the insurance company denied it. Working with Genetech now. Crazy life.

[Hidden in reply to Yooper]

Thanks for the prayers. I will pray for you as well that things go smoothly and it’s resolved quickly. Stay strong!

[kymrob91457]

Hi. I'm SP and I had my first 2 half's of the Ocrevus infusion. I go back for the full dose in January. My Dr. said if it's good for RR and PP why wouldn't it work for SP? I also don't pay anything for the drug. I am very low income. There is a drug coming out in around 2020 for SP, it's called Siponimode. I may have spelled that wrong. I didn't want to wait till 2020, so I started Ocrevus. I have noticed a few slight changes, but nothing big. I'm hoping after my next full infusion I'll notice more. We all have to do whatever we can to advocate for ourselves. Don't ever take NO for an answer. There is always a way to get what you need. Drug Companies want to sell drugs! Good luck in you're journey!

[Hidden in reply to kymrob91457]

Thank you! I saw something about Siponimode so I will definitely keep my eyes out for more info. Take care and Best wishes!

[Hidden]

UPDATE #1: The neuro’s asst just returned my call and was unusually cold. She claims that nothing was sent to Genetech and that I should get everything in writing. She did say that they are experiencing some issues (billing and infusion center confusion) with Genetech. Nothing during our conversation felt comforting at all.

On a side note I’m looking into and found a naturopathic doctor with great credentials and reviews that I plan to see. I have always been curious how well acupuncture will work for me. I figure it will be a good complementary therapy for me along with my PT.

I’ll have another update after my talk with Genetech Monday.

Have a wonderful weekend! ❤️

[erash]

Per my neuro, Sp or pp, it’s all progressive and that’s all we need to tell them.

O has worked wonderfully for me and I’m still not certain what my MS type is? Last MRI suggested Ppms but that was the first that was ever mentioned in 12 yrs. 🤷‍♀️

I agree, thinking positively about your treatment choices is very important. Make the best decision for YOU 🌈

[Hidden in reply to erash]

Thank you! IMO, I this putting a specific label on ms is difficult. My MRIs In May show no change from two years ago; however, my symptoms seems to have progressed. Thanks again for the support! ❤️