Hello family, it's Fancý. It is past time that we put together an updated poll about Ocrevus.
I've recently switched neurologist and I am now seeing the head of the University of Kentucky's MS's Immunology department. He is supposed to be one of the top in his field about MS and how it affects our immune system. Long story short, I was wanting to switch to a new and different therapy and he adamantly said to stay with ocrevus because it was the strongest medicine out there today to fight MS. Wow, huh! Now we all know that you can pull 12 different neurologist and get 12 different answers but I was very impressed with his knowledge MS in general and more importantly how it affects all of this with this disease differently.
So I thought this was a timely subject to bring up to the chat room. I'm looking for numbers, how many of our family are currently on Ocrevus and how long you have been on this DMT. The results we are seeing, both positive and negative. How we are dealing with the infusions. And finally, any questions, concerns, or comments you might have about Ocrevus.
I'll start us off with the first response belòw. Thanks for taking the time to reply. Hopefully we'll compile some interesting data that will help everyone taking Ocrevus.
Fancy
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Fancy1959
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I have been on Ocrevus 2 years this past October. Since my notebook hates to right Ocrevus from here on out I will refer to it as my DMT. Usually instead of writing Ocrevus, it comes up with something silly like Oh Christmas, oak something, okra, or my personal favorite, okra vitus or something similar which I have no idea what that even is! LOL!
I never have had any problems with the infusions except that I hate taking the Benadryl because it makes me sleep for days instead of hours. Yes that's right I'm a little lightweight when it comes to taking any kind of sleeping aid or sedative for pain, etc. The first two infusion Cycles they made me take it and I literally fell to sleep face down in my lunch when they came to check on me, during the infusion. It scared them to death until they realized what happened then we all had a big laugh over it and I got to tell them I told you so! LOL! I don't notice any tiredness for lack of energy the next day. I don't have any reaction to the infusion like hives or excessive itching, excetera. The only things I notice it's because they give me fluids well they give me the DMT, is that I have to use the bathroom a lot cuz you know the old saying quick in quick out! Yes it really say that! LOL again!
As far as having noticeable results the only thing I can really honest play is that when I first get the infusion my spasictity completely disappears but comes back over the course month 3 to 6. I've had a rough past 3 to 4 months because I hurt my ankle bad anytime you got something going on that caused you pain for disability it makes your MS flare up something awful. I am happy to report that my MRIs then extremely stable over the course of the last 2 years. That is the main job of the DMT and getting Improvement with my symptoms is not what the DMT is designed to do, even though it's what we all crave to have happen.
The most important thing I hope you all participate in this post understanding is that this DMT is not a cure for MS. Too many people think it should cure them within an infusion or two but this is how or why is BMT is designed to do. Long-term this DMT is designed to slow down or completely stop any progression in our disability. Those of us who have had MS long-term, like me who has had it for over 20 years imagine how different our current situation would be if we stopped our MS's progression and our disability level 10 years earlier. I know personally my life would be completely different at this point. Why, I believe I would be almost normal and be able to do all the physical, mental, and enduring activities that I only I have fond memories of at this point in my disabled life. 10 years ago I was still backpacking, riding horses every day and getting away for three and four-day weekends with my son isn't husband riding all over the Midwest. Well, I might even still be playing a bit of lower level competitive volleyball. I definitely would be working full-time and helping my the family with expenses, insurance, and have a decent income at my disposal. Boy that alone it takes a huge stress off of me and my family.
Okay everyone you did not have to follow the exact formula and details and ideas that I think Ocrevus has done for me and is designed to do with me, because we all understand this monster is unique to each of us and respond differently to medications we each receive. We need to remember to support research and to continue praying and never give up hope that the next DMT will be the one that cures or stop MS cold. And then is able to repair the damage done by this dreaded monster we all live with called MS. Until that time we need to be there and support one another because we all understand that, "Together we are stronger!" Take care and thanks for your input. Fancy.
I have been thinking of switching to Ocrevus lately. I have my next Neuro visit in Feb so I am going to bring this up to him and have been looking for more info on it. I am currently on Tecfidera but my white cells count keeps dropping and I recently tested positive for the JC Virus. Not sure if the Neuro that originally put me on it acutally tested for it as I can not find it in my records. Thought the hospital did go digital after I was put on it, so who knows??
I do only have one good vein on my right arm that is good for getting blood or injecting anything into because I was in the hospital in 2007 for a blood clot and they always used my left arm to get blood as my right arm was hooked up to the iv. Ever since then, nobody has been able to get blood out of or inject anything into my left arm.
Anyway, this came up at the perfect time and I will be watching for everyone's replies Thanks Fancy1959 for bringing this up
bxrmom, it's Fancy back. I too am JC virus positive. I too, took tecfidera . It never bothered my JC virus count but while I was on tecfidera my disability ran amok and I suddenly progressed from relapsing-remitting to secondary progressive MS. It's like t was in this muddy tube going down a hill and I couldn't slow mý1 descent. My walking got very unstable, I was extremely tired and irritable, my bladder became extremely incontinent , and I lost a great deal of coordination and dexterity in my hand. To stop my disability progression my neurologist put me back on tysabri. I had been on it prior to the tecfidera and saw an improvement in my disability but being JC virus positive my husband was extremely nervous and asked me to get off it. It was while I was on this, my second round of tysabri that my JC virus count started to rise dramatically. It scared me to death and I started feeling sicker and sicker I finally just took myself off of it scared to death that I was becoming infected with the brain infection..
My then neurologist got me on Ocrevous in October the year it was approved in April which was within about four or five months after I stop taking tysabri. The neurologist I am currently a patient with is is the University of Kentucky's MS Immunology Clinic and he is one of the best you know what area from all accounts I have been able to find. When I asked about getting off ocrevus and started new DMT he told me that ocrevus what is the best DMT on the market today and I needed to stay right where I was and give it time to work.
Hey my sister Fancy1959 so glad to see you here! It's about time!
I have had 2full infusions of O. The 2 halves and 1full.
The infusions were great! No problems with them. The nurses are outstanding and knew what they were doing!
Like you said tho. Bathroom breaks, Alot.
My problems were after. They TELL YOU, tightness in the chest get it checked, I did. It was nothing.😁 And I was really really tired after the 1st 2. Took me about 2wks to get over that.
Now the 2nd? Solmedrol kicked my butt.
I won't know if it's working until I have another MRI and/or relaspe. Whichever comes first. 🙈
I'm JCV positive also bxrmom 🤗 that's why they put me on this, well one of the reasons.
Jes, c I know you have gone through other medical complications due to your neck surgery but have you seen any difference or any sign of disability slow down or improvements while you've been on Ocrevus? Fancy.
No improvements, but that's not what it's supposed to do. And it's still to early to see any slow down I think. I average a relapse every 6 mos. Sooo.🤗💕🌠
I was diagnosed in 2005. I had been on Copaxone & Techfedera. I had seversl relapses on techfedera & very few on copaxone but stsrted having tissue problems at injection cites so i changed to Ocrevus. I have had the the first 2 half doses & 2 full doses of O. I haven't had any reactions during or after the infusions. The benadryl always makes me sleepy during the infusion. The Solumedral always keeps me awake the first night. The last time it took 7 sticks before they were able to start the infusion. The next time I will make sure that I am overly hydrated. I too have to make a couple of trips to the bathroom during the infusion. Almost all of my MS symptoms have disappeared. I have been able to get off all MS meds. I have more energy than I have had in years. After the last infusion in Sept I started having problems with my thyroid meds. I have taken Levothroxin for years without any problems other than hair loss. But two weeks after my last infusion I ended up in the hospital with thyroid toxicity. My gp thinks it was the O since everything else has gotten better that it's also affecting my thyroid by making it more efficient to where I need less medication. We had to drop my dosage down to half of what I was taking. I haven't had any relapses since starting O. I still have cognitive issues but no dog fog, just recall issues. I also still have balance problems. I still trip over all that "matter" floating around at ground level. The hardest part about the infusions is that it takes all day. I live 2 hrs away from the infusion center & it takes about 5 to 6 hrs then the drive home. I have to have someone to go with me so they have to find something to do for the 5 to 6 hours.
Oh, hairbrain4, it's results like yours that give the rest of us hope to continue fighting and staying on ocrevus. Please keep us informed of your improvements and I know how things go with your DMT. Fancy.
Fancy1959, Been on Ocrevus for a while. It beats giving myself shots just a pain doing the two hour IV. So far only pain is they never seem to have drugged mixed when l get there.
Gsimons, I'm not sure about everyone else but I believe we all go through the same thing. I think it's something to do with the pharmaceutical parties of the DMT that they mix it just prior to infusing it. My infusion center always has to call down to get the DMT mixed as well. Did you mention you're doing a 2-hour IV? When I do the DMT it takes me approximately 4 to 5 hours to complete it. Normally it's about 4 hours to receive the full dose and then they keep me for an hour afterwards just to make sure I'm doing okay. I'd like to hear from others to see what protocol others face when they're taking the empty as far as time constraints. Fancy.
Hi Fancy! I switched to Ocrevus in May 2017 after my test results came back JC positive (I was on Tysabri before). I haven’t had any new lesions while on Ocrevus and no adverse reactions to the infusions. Infusions every 6 months - instead of every month like on Tysabri - are an added bonus for me!
Also started the Wahls Protocol to help with symptoms, like brain fog and constipation. Too soon to tell if it will work - I think my body is going through detox right now 🙄
Jmhnath, it sounds like the DMT is stopping lesions for most of us. Which is a huge benefit because new lesions mean new disability. Good luck with the Wahls Protocol. A healthy diet and detoxing oneself is always good for everyone. I've been working on my weight as well and I'm happy to report I'm down about 26 lb! Yahoo. Thanks for replying. Fancy.
i have been on it 2 years,no new lesions,i guess that is the goal,I don't see any noticeable improvement but I really believe I have less fatigue,and I am with running to the bathroom every 15 minutes I swear during the treatment,darn IV!Now I do believe I need the treatment every 5 months instead of 6.my dr says we can do a blood test at 5 months and see if ocrevus is still active in my system that is the only way insurance will approve an earlier treatment if it is not,I think I might do that next time
Pam, please keep in touch and let us know if you do indeed start the DMT infusions every 5 months. I'm glad it seems that the trend is most of us have had no new lesions well on this DMT! I'm glad to see that you're seeing some improvements in some areas as well. Again please keep in touch and take care. Fancy.
Minor rash during first half dose that resolved by slowing the infusion. After the third and fourth infusions the lymph nodes in my neck were tender but the last couple of infusions they were not.
My MRIs have been stable, didn't even have one last year because my neuro said Ocrevus is so good I can go 2 or 3 years between MRIs now. I am going this year though just to see.
Symptom wise my right sided weakness has probably gotten slightly worse but I can still work 2 jobs. I also have intermittent vertigo which didn't start until a couple years ago. It lasted for over a month last May/June. My neuro gave me Gabapentin and taking one at bedtime seems to keep it away and helps me sleep better too. I have taken it a few times during the day when I have gotten vertigo and it went away.
I am very happy with Ocrevus. I love the twice a year dosing and basically no side effects. The minor inconvenience of sleep cycle being messed up for a day or too because of the Benadryl and Solumedrol is worth it. My last one actually didn't cause me any problems with my sleep. I did force myself to stay awake during my infusion and took Gabapentin at bedtime and slept fine. Felt great the next day thanks to the Solumedrol!
You could ask if you can take half the dose of Benadryl or leave it out completely. I have heard others in the infusion center do that. Now that it isn't your first exposure to the medicine a reaction would probably be less likely. Just ask your neuro for their opinion.
ahrogers, I've done one better! I haven't had Benadryl for the last 3 infusions. I take along my allergy medicine, Allegra and take it prior to my infusion. They seem to be fine with it because I never have any trouble with the infusion. I've also stopped taking the steroids prior to the infusion because I had a serious problem with steroids back in April where it messed with my pancreas and stopped my insulin production and I threw high sugar numbers for the first time in my life. Superior my Allegra and take it prior to my infusion. They seem to be fine with it because I never have any trouble with the infusions. I've also stopped taking the steroid prior to the infusion because I had a serious problem with steroids back in April Where it messed with my pancreas and my general doctor wants me to refuse all steroids if possible to treat symptoms of anything. The only way I got the infusion center to agree to this was that if I had any negative symptoms like rashes, hives, xcetera they would immediately dose me with steroids. Once again I never have any issues with the infusions so I have been able to get rid of the Benadryl and the steroids. Glad to hear once again infusions have stopped since you've been on this DMT. Again that's a great positive thread that's going through this entire post so far. Thanks for replying and take care. Fancy
Great to hear you do well without any of the typical premeds. I wonder if they will decrease or eliminate them for more people if they get enough people doing well without them! Maybe Allegra will become the new premed for all 😁
I’ve been on Ocrevus for a year now. I feel my symptoms do minimize after an infusion, except for my fatigue. That never seems to budge, no matter what I do. I think I feel the best for the first few weeks after the infusion, but that gradually declines. It seems as I get within about 2 months of my next infusion, I feel even worse. I’m not sure if I am actually feeling worse, or I just think my symptoms are worse then ever because I actually had some relief for a few weeks. My husband seems to think I should go back to Tecfidera. What he doesn’t understand is that if I get a few good days within those 6 months after an infusion, it’s way better then having no good days. My sister is on Ocrevus also. I think she has been on for 2 years now. She thinks the “feeling good” period gets a little longer with each infusion. I’m hoping I will experience that as well. All in all, I do think Ocrevus is a wonderful thing thus far.
I give you all credit for dealing with the infusions. I am such a bad stick that they have trouble just getting blood! The one time I had 5 days of steroids via infusion I got them to tape the heck out of my arm to keep the stick in place so they didn't have to do it again! I pray I can stay on my little pills and leave the sticks to braver people than I.
i have been on it since it came out in 2007 and i feel it is the best of the best out there ...has helped so much better walking can work outside during the heat of the day for more time than i have ever been able to do since getting this monster that is riding on my back ...so glad to hear him say that for i do believe it is great ....
I had my first two half doses in September. Going for MRI in March prior to first full dose. First half doses I had slight redness and tickle in throat which benedryl helped. After both infusions that night and morning after I had very sore legs. Extra strength tylenol helped. I felt tightness in throat after second half dose and have been taking claritin. I think it has helped my fatigue. Praying mri goes well. I was recently diagnosed in July.
I’ve had 4 full doses of Ocrevus plus the 2 half doses. So far I’m stable which is all it’s meant to do. I was also stable on Tysabri for five years but my JCV+ index kept rising so my neuro had me switch. The pre-med Benedryl knocks me out for an hour or two which is actually kind of nice since I’m stuck there all day. I also get a bad headache afterwards on my way home that continues for the next day or two. I struggle with my fatigue level during the month prior to an infusion. I’ve talked to my neuro about it and all she would say is that she has heard this from other patients. I’m going to try again at my next appt to see if I can get the infusion sooner than exactly 6 months. I realize that insurance plays a role here too.
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Thanks Fancy1959 for bringing this up 
Ocrevus not for me
Recently Diagnosed with RRMS
New Medicine
Ocrevus, is it the right one for me?
