Have any of you taken Ocrevus besides Allen5280 ? I talked to my Dr yesterday. She said it could actually cure my PPMS. However, everything I read other than from the manufacturer or the news. Says this drug SUCKS! It makes things worse! I know Allen has only had does. But how he explained the days after. I am in enough pain. Not sure I could handle 2 or 3 days of more intense pain. I am so very doubtful and scared. I am supposed to go on this at the end of this month. So looking for input.
Thanks all of my favorite people.
Rob
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rlh1974
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Hi rlh1974 , I will be starting Ocrevus infusions soon, and have obsessively researched both ocrelizumab and rituximab over the past year, if not longer. I have some medical background so am able to navigate the literature and research pretty easily and have to wonder what sources you have read that have formed your impressions of this drug? I'm also concerned that your doctor would tell you that ANY existing drug could "cure" your MS, as it strikes me as quite an irresponsible statement. Is your doctor an MS specialist? Did she elaborate on her view or offer any supporting evidence on which she based it?
I am seen at Duke University Medical Center, both for a connective tissue disease and for MS, which my specialist suspects is PPMS, although this is not entirely clear in my case. I've spent literally hours in discussion with him about the research on MS and B-cell depletion therapies, and his experience with it. My rheumatologist is the head of Rheumatology and Immunology there and also happens to be one of the world's leading experts on rituximab, the older sibling or 1st generation of ocrelizumab. I have also spent hours in discussion about the two drugs with him, and he said from everything they have seen so far, they expect Ocrevus to be "at least" as effective as Rituxan (rituximab), with a very similar drug action but better selectivity (more precisely targeted destruction of B-cell components), and because it is humanized instead of chimeric (combining both human and mouse tissue) that the incidence of immune reactions to it should be improved. Neither doctor is touting it as a miracle therapy and certainly not as a cure, but both think it may be the best currently available treatment, and for my particular case consider it to be "reasonable" and "intriguing." B-cell depletion therapies have shown benefit in connective tissue diseases as well as in MS, so for me the hope is that it will address both conditions.
Trial results for Ocrevus showed nothing close to a cure, but were overall promising for slowing or halting progression, and in PPMS a relatively small percentage of participants on the actual drug (as opposed to placebo) showed some improvement. The overall safety profile has been relatively good. All of the serious drugs have risks, and a fairly high percentage of people had infusion reactions of some sort, the majority of which were easily managed. I am following Allen's progress also, and was worried when his initial improvement was quickly replaced by a very rough couple of days. However, as I understand it he is not at all sure that there is a definite connection to the infusion at this point. It all boils down to an evaluation of risk vs. benefit, which should be an in-depth discussion with your doctor. You may also want to seek a second opinion if you have another MS specialist in your area. Best of luck to you as you grapple with the pros and cons, and for what it's worth, I am also apprehensive - but excited and hopeful as well. Take care.
dianekjs Gosh! you are a rock star for all that info!!!!!! Thank you oh so much!
My issue with the side effects is that I am the 2%er. Not the rich kind! HAHAHAHAHA! Cancer runs in my family and generally if there is a bad side effect, I am generally the one to get it. When she said that. My wife and I were stunned! In shock actually, Because we have read nothing of the sort! Even from the manufacturer. They say a 24% chance of lessening the progression symptoms of PPMS. So, I don't know. As far as what I have read. the biggest source in a blog. wheelchairkamazkee. Some various other stupid blogs. I don't believe everything I read on the inter web. That is why I am posting here. Because people like you that are much more intelligent than I and probably have better cognitive skills can help answer my questions and address my concerns and just plain ole support me.
Seriously Diane, I assume that is your name from your user name. Would you mind if I PM you with any other questions I have?
dianekjs yes, Ido have a specialist at Copley University, he is a drug researcher for MS so I am looking forward to what he has to say at the end of the month. This is my MS dr I see every month for my short term disability through work. They make me go every month to get a piece of paper signed saying, yep he still has PPMS and can't work. and by the way will never work again. Stupid. It would be much cheaper for them to fax it. I also had my HEP tests yesterday. Obviously I am cleared to go if I choose.
rlh1974 I'm just now reading this and very concerned that your Neurologists would even suggest that there is a cure. There is NOT! I would also advise you to give MSAA a call Monday morning 1st thing and get a new one.☺
Jesmcd2 thank you! I can feel you anger and frustration! I have a specialist at Copley. This Dr I see monthly for daily meds and a note from work as well as my application foe SSDI.
Thanks for the thorough post dianekjs ! I am also concerned for rlh1974 that his doctor characterized Ocrevus as a cure. I had talked to one of the researchers in my neuro's office the day that Ocrevus was approved by the FDA. I was questioning her about the cancer risk that I've read about.
In your conversations with your specialist about the trial results for Ocrevus was there any discussion about patient age and Ocrevus?? I've read a discussion between a Barts and London professor of neurology, (and MS specialist), and another MS neurologist about the trials and the age 55 cutoff of patients in the trial. It made it sound like anyone over 55 should proceed with caution because it hasn't been studied in older MS patients.
Wondering where it says there is an age limit up to 55? I looked all over the Internet so far have not seen anything except a minimal age of about 20 I think maybe 15. I did not see anything about an age limit at the top.
Hi itasara ...the demographics of the people in the trial had an upper limit of 55 years of age. That does not mean that doctors won't prescribe it for people over 55 but that it was NOT studied in a population over 55.
That too was my understanding. Study perameters are for uniformity. I suppose the researchers would want to further the study for those over 55. There may be a reason for the 55 yr limit that want mentioned
dianekjs has great advice to my way of thinking. I'd certainly question the cure claim. I think the best we can do is educate ourselves as well as we can, weigh the benefits against the risks, and pray we make the best choice we can. Though the doctors and researchers provide great information, it is still our bodies, and only we can make the choice about what we are willing to try.
You're obviously a smart person and will make the best choice for yourself. Keep us posted!
dianekjs is exactly right and explained things way better than I could have. Remember Rob I am hypersensitive to meds... with the change in my rx for my muscle relaxer to Flexeril I am doing so much better. Still a little sore form the spasticity but all is good and I can't say that Ocrevus held any responsibility. I started out on baclofen and during my dmt of gilenya I had a similar experience and my Dr had to change me to Zanaflex. That's what I just switched off of. I will say my neuropathy is so much better than it has been over the last few months. That and I also have not experienced my trigeminal neuralgia since starting Ocrevus . There are some benifits starting to show that I had not expected to show improvement in. I am just trying to do an update as for sort of a Journal as to what's going on with everything during the transition. I am pleasantly surprised so far because the others I have tried in the past each had their own nightmares associated with them. (Other than the bout I had to go with spaticity) I am reflecting back on things a bit and it may very well just have been a time to change up my rx and just so happens if fell into the switch in dmt. Probably won't be completly sure until after my second dose. I do still plan to get my second infusion on the 18th if that's any consultation to you. 5 days ago I was on the fence, now I am going for it again.
Hi Allen5280, so pleased that you have turned the corner. I will be praying for you for the 18th. With you been sensitive to drugs, can they not introduce you to it slowly, and only give you small doses until your body is ready for it. We are not the same and everyone should not be treated the same. There should be some system in place for people who are hyper sensitive. Maybe have a word with your ms neurologist and see if it's possible. I still think you are so brave, trying this new drug. Blessings Jimeka 🦋 🌈
Hello jimeka ! 😆 Yes I am doing so much better, thank you! As for the infusions. The first dose has already been split in half to try and allow time for my system to adapt. With the immediate relief with the change to Flexeril, I believe I'm just going to see what happens with the scheduled infusion and go from there. The start of Ocrevus I didn't want to do. After all the problems I have had with Tifectdera, then gilenya and copaxone to follow I really didn't want to go down those roads again. Tifectdera made sores all over and I was loosing my facial hair which still hasn't returned completly. They all made me so sick. Copaxone was the worst nightmare with the injection site reactions. I have been stung by 🦂 that hurt less. I stuck with that for over2 months. All for a 40%chance it MIGHT keep someone from having to whipe my rear and change my diaper. It was actually knowing people on here and others in my community (for a town of 28k I know of at least 20ppl here that suffer from MS...things that make you go hmmmm) this is what pushed me past my own anxiety of an new dmt. I have an INFP personality type and I am happiest when doing for others. Partly so others don't have to care for me and partly for those whom could benifit from my experience. No matter the outcome it is a win win for me. In the words of my specialist I have an "aggressive disease course". For he told me "I believe in miracles" for "you shouldn't be walking or talking at all". So through the grace of God I'm still here for his purpose. I am just doing my best to get by and follow his lead to the best of my ability. For I have been granted time for redemption and I draw my strength through him. I am so blessed and y'all are in my prayers.
Well if after the 18th if I have problems again then i think we will look at the options of dosage. I want to see what transpired after I have had the other 1/2. Not looking forward to issues but I think it nesecarry to possibly recieve more data from the designed application. For everyone's sake.
jennie62 I can only assume that I have not been experiencing issues with trigeminal neuralgia because the only change that was made at the time was starting Ocrevus. I haven't experienced it since starting last week. My teeth don't feel like they are rotting out of my head. My face (except it may be killing everyone else 😂) hasn't been hurting nearly as badly with the exception of the spaticity that was in my cheek. It is a different kind of pain, Spaticity vs TN. Still having migraines though, Excedrin is my buddy. LoL
Ibuprofen is my friend, wish I could take Excedrin! My neuro is giving me Botox injections for my chronic migraines. Depending on the weather, raining makes me ache everywhere, I have to see my neuro in July for another Botox treatment, that's when I see him about my TN and MS rx as well. Yesterday I left a message for him regarding the Ocrevus infusions (memory stinks, I forgot to ask the last time I saw him) and asked if the rx I've been taking for the past 2 - 3 years makes my enamel/teeth fall out...Yeah, oddly enough I also have issues with my teeth too!
Allen5280 I am so glad to hear a follow up to your last post, and even more happy to hear you seem to be experiencing some benefits! You have been in my thoughts. Please let us know how the 2nd infusion goes.
I am with you I was contacted by my neurologist about talking with him about talking about this medicine. I really don't want to have more pain. Please post any and all information as you have it only if you are on this medicine.
I left a message for my neuro yesterday to talk with him about Ocrevus. I'm with you 100%; I don't want any more pain and I'd also love to hear more about the Ocrevus infusions.
I have SPMS and am currently on Rituximab which is the same drug as Ocrelizumab (Ocrevus). I started this drug September 2016.
I am extremely surprised that your doctor would tell you that this drug could cure your MS. The information from the manufacturer is the drug should slow the progression of the disease and potentially show improvements.
I do not have any side effects from the infusions. My disability score has improved slightly. I walk a little better with my cane. Still cannot walk for long distances.
I am happy with Rituximab and hope to be transitioned to Ocrelizumab.
OK, Update from me on Ocrevus. I spoke at length yesterday with my MS Specialist and Nurse Practitioner at Ruch-copley Downtown Chicago. Unlike my neurologist statements. It is no cure all for PPMS or SPMS. They did say it works wonders RRMS and the relapses. Best drug they have seen so far for that. But PPMS & SPMS, it does only possibly maybe slow things down. To what extent. Who the hell knows? It depends on the person. They did confirm that my cancer risk is very very high. Also with my history of having the 2% symptom reactions to former drugs, that the other side effect chances are much higher for me. They/we decided to wait to see how Ocrevus plays out in the public before I hop on. Also, until I am on SSDI and medicaid. That way if I get approved for it. I can get the full dose. As it stands right now, I would only get half a dose before my insurance runs out. That would be less than useless. They also stated if I change my mind that they would be more than willing to get me on it ASAP. SO I really appreciate them taking the time. I feel terrible for the person who's appointment was after mine. We talked for at least an hour. I left feeling much better and more informed then before. They were very impressed with my knowledge of the drug and the research! I remembered stuff I wanted to talk about without making a list of questions! My wife was stunned! But I did struggle with big words and numbers. Big surprise!
So anyway, since I started this conversation. I figured I would update you guys on where I am with it. I pray everyone has a great weekend and stays cool. Pray for me as we are having a large party for my sons graduation tomorrow and its supposed to be upper 80's and high humidity. So a death sentence for me.
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