Adverse Effects Influence Patient’s Perspective of Ocrevus’s Effectiveness, Survey Shows

Adverse Effects Influence Patient’s Perspective of Ocrevus’s Effectiveness, Survey Shows

Higher rates of adverse effects have a negative impact on a patient’s perspective about treatment with Ocrevus (ocrelizumab), according to a survey conducted by the multiple sclerosis community GeneFo.

About half of the 840 patient responses surveyed so far have reported improvements from Ocrevus. Those reporting none had a higher rate of adverse effects, a finding highlighting the importance of doctors managing the therapy’s side effects.

The U.S. Food and Drug Administration approved Ocrevus, which was developed by Genentech, on March 28, 2017. It was a landmark decision, because Ocrevus became the first treatment approved for both the relapsing and progressive forms of MS.

Now, a year after the approval, GeneFo asked patients about their experiences with Ocrevus.

“There has been such a buzz in the MS community, and on our platform in particular, about Ocrevus, which is completely natural as patients are discovering in real-time the effects of a new disease-modifying therapy,” Neer Ziskind, GeneFo’s CEO, said in a news release provided to Multiple Sclerosis New Today. “People who began treatment were happy to share from their experience, and potential Ocrevus users were of course eager to learn from their peers and get advice on how to best adapt to this new medication.”

Sixty percent of the patients who have responded to the survey have relapsing-remitting MS and 28 percent primary progressive MS. Eight percent of the rest have secondary progressive MS, and 5 percent progressive-relapsing MS.

Half of the respondents reported no improvements, while the other half felt Ocrevus was effective. Thirty-six percent who reported improvements said they could walk better, 36 percent said they were less fatigued, and 14 percent said they could see better. Many respondents reported better balance, bowel movements, and heat tolerance, and less brain fog and numbness.

Forty-four percent of respondents reported no long-lasting adverse effects. But 21 percent reported more fatigue, 12 percent more pain, 10 percent more itching, and 6 percent more infections after treatment.

In trying to understand the reasons underlying the effective versus non-effective outcomes, those analyzing the survey results found a significant correlation between adverse effects and lack of effectiveness. Among those reporting that Ocrevus was effective, only 27 percent had lasting side effects. The figure was more than double that — 58 percent — among those who found the therapy ineffective.

Although the findings reflect patients’ perception of the therapy’s effectiveness, they highlight the need for doctors to pay close attention to managing any adverse effects associated with Ocrevus. A better perception of the treatment could not only improve a patient’s mood but also their willingness to stick with it, those doing the analysis said.

The report also found a correlation between gender and the perception of Ocrevus’s effectiveness. Seventy percent of men reported it was effective, versus 50 percent of women. Once again, the numbers correlated with the rate of lasting adverse effects. Ten percent of men reported lasting effects, compared with 54 percent of women.

Although this gender difference needs to be further evaluated, it calls attention to an important factor in treatment optimization and care, those doing the analysis said.

GeneFo is looking for more feedback on Ocrevus to enrich the initial results. To participate in the survey and see an infographic highlighting the results so far, please visit https://tinyurl.com/genefoOCREVUS.

53 comments

  1. Keith Layton says:

    I have had two UTI’s resulting in hospitalizations- one, 1 month after the 1st infusion and 1 DURING the 2nd infusion (THAT WAS WEIRD!). My neurologist believes, as I do, that this is a likely result of the Ocrevus. I have had two infusions thus far.
    I do, however, feel that my disease has stabilized (PPMS), so I will continue with the infusions.

    • Deborah Tedesco says:

      I, too, had an UTI after my second infusion but it never occurred to me that it could be from the infusion. I don’t think my disease has stabilized though. I’m progressively getting worse. I cannot walk without 2 canes or walker and only for a very short distance.

  2. Susan Nichols says:

    My problem with the side effects of Ocrevus has not been my doctors’ failure to manage them. It has been the unremitting volume and nature of side effects that has required me to take four antibiotics, an antifungal, two antiviral medications, and greatly increased Baclofen for spasticity since starting Ocrevus. I’ve added a daily antihistamine and had a three-day course of Solumedrol for a flare. This has gone on since October. The antibiotics were for two UTIs and an ear infection I’ve had in addition to two stomach bugs and one cold. I’m worn out with feeling bad despite curtailing my social life and obsessive use of sanitizer. So it’s not my doctors’ or my failure to manage my side effects from Ocrevus. I’ve never had side effects like this from any medicine and am worried about all these other meds I’ve had to take.

    • Carrie says:

      I really appreciate your response. I want to hear from all people’s experience in helping me decide what to do especiallylems and side effects and issues like infections. Feeling pressure, supposed to give my neuro a decision what I want to do. First I think, I’m going to try it, then I think no. First I was going to jump in and try it, then I started wondering because my body tends to be so sensitive and reactions to every med including antibiotics, the flu shot, and two other DMDS, so concerned about reactions and sensitivity to this. Especially since I have no new lesions for two yrs and symptoms currently are mild to tolerable. I know there is the risk of possibly more problems long term for me with the MS, trying to weigh all the risk factors I would and wouldn’t want to deal with in my decision. I feel both ways are a risk but at least I feel when I decide, I’ll have weighed the risks. I hope you get to feeling better soon!

      • Ciel says:

        I’d be interested in knowing what you decided and how it is going with whatever your choice. Have you tried other DMTs without success? I am taking Ocrevus now, just finished my third infusion. I would not have chosen it as an early med.

      • I too react to just about everything so was quite concerned about reactions during the infusion. I did react – felt electric shock feelings in my heart, palpatations, my throat was closing and felt like I had thousands of ants on the back of my legs. The infusion was stopped, then restarted at a slower rate with no other side effects. This was administered in November 2018 and since then I have had two bouts of viruses, two lots of cold sores, lathargy is worse, skin itches,seem to be reacting to foods, dizzy and nauseous spells, and my thought process is worse than ever – I just can’t think …

  3. Ardelle says:

    I have had no problem. After the first infusion, I started feeling better after 2 months. I had my second infusion in February and I feel great. Lots more energy. I can now occasionally do 10,000 steps 2 or 3 times a week. So far, so good and no cancer yet.

    • Lori Grebinski says:

      I have just had my first infusion and I am experiencing lots more energy and not sleeping more than 5 hours each night which for me is odd. Just wondering if many others have more energy

  4. Kevin Lipetzky says:

    Thank you all for sharing. I am always looking for something that will help me walk better. Presently, I am on abagio. I question taking a chance on a new drug. Also, the hasle of Insurance. I. am just getting tired of being a cripple.

    • Jenny Miller says:

      I switched from Aubagio last summer and had my 3rd dose of Ocrevus February 15th. I am seeing improvement from something. I have been doing robotic PT, which is really helping my muscle memory. I did have a UTI requiring hospitalization, but mine I believe was likely from self catheterizing. I have gone from having to wear diapers and pads to back in underwear with pads after three years. This has thrilled me! I was spending almost $200 per month and insurance does not help.
      I work as a nurse practitioner around very sick people, but I wear a mask with everyone for two weeks and sick people for 1-2 months. I have stayed very healthy (for which I am thankful). I was quickly losing my ability to walk. I still use my walker,but I believe with working on my stamina, I will quickly be to cane and then without any assistance. Think about giving it a chance.

    • Jenny Miller says:

      I switched from Aubagio last summer and had my 3rd dose of Ocrevus February 15th. I am seeing improvement from something. I have been doing robotic PT, which is really helping my muscle memory. I did have a UTI requiring hospitalization, but mine I believe was likely from self catheterizing. I have gone from having to wear diapers and pads to back in underwear with pads after three years. This has thrilled me! I was spending almost $200 per month and insurance does not help.
      I work as a nurse practitioner around very sick people, but I wear a mask with everyone for two weeks and sick people for 1-2 months. I have stayed very healthy (for which I am thankful). I was quickly losing my ability to walk. I still use my walker,but I believe with working on my stamina, I will quickly be to cane and then without any assistance. Think about giving it a chance.
      From what others are saying, be cautious and listen to your body.

  5. Irina says:

    My responce was very negative after two half doses. I feel like I was set off by severe progression. I am refusing my full dose.I am one of the “21 percent reported more fatigue, 12 percent more pain, 10 percent more itching, and 6 percent more infections after treatment”. I have way more fatigue and now have bone pain which I did not have before. Moving is much harder. I used a cane before and still use it now, but some days I just spend in bed.

    • Fara says:

      I took my first dose in January 2019 and it’s been a month now that I am always tired I sleep a lot. I wish this goes away because I was active before treatment and now I feel My bodys age is 88 years old. I am 30. I wish you all a good day and myself as well

    • Laura says:

      You just answered a huge question that I have regarding Ocrevus and bone pain. I just had the second half of the first dose.. I feel like I am in a complete flair up. I cannot walk, I have no energy, terrible bone pain and spasms to boot. Not sure it’s worth it..

  6. Patricia A Jones says:

    I am considering this medicine I am in a wheelchair have not walked in several yrs I have had 2 kinds of chemo tried not everythint I have primary progressive but I am more confused reading comments than I was before very scared any suggestions?

  7. David says:

    I had an infusion Sept 2017. Starting in October I had a cold that turned into bronchitis and lasted for a month. This resulted in a sinus infection for which I rec’d antibiotics. The antibiotics gave me C-Dif for which I rec’d another antibiotic. After that cleared up I had severe tension headaches with vomiting in January, (never had headaches in my life). I ended up in ER and had solu-medrol infusions and they cleared up. In February I lost vision in my right eye and as of now my eyesight hasn’t completely recovered yet. Keep in mind, I have PPMS and had none of these problems since I was diagnosed in 2011. It seems that Ocrevus reduced my immune system causing a lot of what I went thru. I have not experienced any improvement in my MS symptoms. I only had one infusion and will re-evaluate in December.

  8. Cheryl says:

    I started Ocrevus after my monthly infusion of Tysabri began causing regular bronchial infections, including 3 bouts of pneumonia. Tysabri worked wonderfully to manage my remitting relapsing ms until the illnesses started. My experience with only the first dose of Ocrevus was/is awful. I refused the second half because I was worse than ever after the first dose. My fatigue was increased by at least 60%. I was depressed, irritable, and in more pain. The numbness in my right leg and arm increased, and my balance has been 70% or so worse than before the Ocrevus. I’ve experienced shortness of breath, and a general feeling of overall ill health. I don’t go anywhere unless I absolutely have to. Before the Ocrevus I was very active, full of life, and managed the ms symptoms with a positive attitude. I’m one month away from when I would have received the next dose. All I can say is that I’m praying that this drug exists my system fully so I can try to reclaim some of the life I had before.
    If this drug works for you, I’m glad, but for those it doesn’t, it cn be terribly debilitating, physically, emotionally, and relationally.

    • Alicia Wight says:

      I’m feeling the same as you after my 2 initial 1/2 doses (infusisions in May). The fear of never being what I was is constant. Know that your not alone. This experience has been both physically and emotionally horrific. I’m terrified as to the consequences of my taking this drug.

    • Shelby says:

      I am having the same exact problem! I have only had my two half doses & am due to have my full infusion in February. I have been extremely depressed since starting ocrevus, way more fatigue, pain & tightness/pain in my chest. I am really feeling like this is from the medicine & not from a progression in my MS.

  9. Patricia Vasel says:

    I had my first half dose of ocrevus June 11,2018 and had no side effects at all
    The very next day after my infusion I cleaned my entire apartment,3 bedrooms and stairs. I was feeling extremely sluggish for 6 months and hardly making it up my stairs to get to the bathroom. It took me 5 hrs to vacuum,mop, dust, clean all the nasty bugs out of the windows and do laundry. Being 3 days after taking it I’m still feeling great!! I have a lot of energy,my balance is quickly getting better and my energy level is higher. I’m looking forward to my second half dose on the 25th of this month and can’t wait to see how my first full dose in December will be like. Before this med I was on tysabri for 7 yrs and slowly declining after 2 days. I’ve had 2 relapses in the end days of tysabri one in Feb then soon after in March with 5 days in the hospital not feeling much better after the steroids but now I can say nothing more than starting ocrevus has been a God send medication for me. For those who haven’t had a good experience,I pray the best for you that the right meds will come your way. I’ve had MS since 1997 and it’s in no way at all fun but an everyday challenge. I started off at the age of 21 crawling only to now be 43 and walking with no assistance as of yet being the best I can be. May God bless you all as I pray for all everyday that I do and don’t know that all will be well and a cure will soon come.

    • I’m so happy for you. Your results are what we all hope for and have heard about. I had my second one a month ago. I had no side effects and all but also can’t tell any difference except my walking is worse 🤨 I have ppms and so hoped to be like you and other stories like yours. I’m sure one day they will figure it all out.

  10. Jane Sprague says:

    Is anyone alarmed by the clinical history of this drug? They suspended the clinical trial for RA because too many human research subjects died. Then they tried it on lupus patients, again–deaths and bad kidney problems developed. So the drug co. (Genentech?) nixed it for lupus and it is now aimed at us. I have read in some of the data that researchers felt MS Patients would better tolerate the side effects of this drug. It seems like a dangerous agent. Are that many MS people really gaining more mobility, fewer remissions, etc.? and how does that square against some of what people have written here? As MS patients we are super vulnerable to getting excited about new and potentially promising agents of healing; I’m not at all convinced ocrelizumab is worth the risk, especially given the drug company’s history marketing it to divergent groups of sick people.

  11. Chris says:

    Supposed to be getting the second half of my first infusion tomorrow and I’m unsure about it. The first half of my infusion went fine… I felt alright that day, but I don’t deal well at all with steroids mentally, so that hit me for a week. I’ve also had more issues with my bladder, bowels, balance, and brain (cognitive and emotionally) since the infusion. My legs have started to feel weaker as well as having more tension in my back and neck. I most definitely do NOT feel better or even as well as I did prior to my first half dose. I do know that some people end up feeling a bit better a few months into treatment so I suppose I’ll give it a shot, but if this has been any indicator as to what my new “normal” will be, I’m not a fan.

  12. Veronica says:

    Have you tried taking Ampyra for walking? I stared it in June and I felt wierd taking it but I kept at it because it takes several weeks to start working. After two weeks, I stopped using my walker and cain. People cannot even tell I have MS now. I still have all my symptoms, but only I know it. I can live my life! I started taking Ocrevus not to suddenly feel better, but to stop the disease from progressing. If Ocrevus can stop developing more lesions and brain damage, then I am all for it. Ampyra is my majic walking pills, and I get them for free thanks to their copay assistance program. Please talk to your doctor.

  13. Patty Seder says:

    I have had two rounds of Ocrevus. Like many others, I anxiously awaited the FDA approval. I was diagnosed 25 years ago & have run the gambit of all the available drugs. Ocrevus totally kicked me to the curb. I got so sick after each infusion that I finally decided it was not worth the misery. The nurses at my infusion site have shared that they have numerous patients who are not tolerating it well. I have been “drying out” from the Ocrevus & will restart Tysabri again soon. It’s all about quality of life & Ovrevus was toxic to my body.

    • Adrianne says:

      I just read your comments about Ocrevus from 2018. I just took my second round in December. I have had my first exacerbation since 2008 – double vision and fatigue. I have an appointment with my nurogist in a week. I plan to beg to return to Tysabri. How are you doing back on Tysabri? How long did you have to wait to go back on Tysabri?

  14. Marie Lippman says:

    I began Ocrevus last October. Then in January I got bronchitis and it lasted a month. Then in July, I got an UTI that lasted over a month and 3 different antibiotics. And very fatigued. This stuff never happened, ever in my life! I battling Ppms and Ocrevus is only making me feel worse, so I’m so done with it!!!!

  15. Tania Mullan says:

    I am relatively new to managing MS(3yrs) . My specialist say I’m “low level” but due to a lesion in my brain stem and me needing to be functional as a single Mum with limited family support, he started me on Ocrevus in May. I tolerated the infusion fine. Felt ‘unwell’ for a couple of days’ but otherwise ok. Then I went from feeling like a sodden sponge dragging myself around the house, to having a spring in my step like I remember from years ago. I no longer needed daytime naps. I was managing my house/work with optimism and renewed hope of a ‘full’ life in future. Over last month I have started deteriorating. I have had emotional lows, my fatigue has returned, and aching arms are a constant. My memory/concentration is also crap. I’m about to have a review MRI/bloods done with my upcoming second round being brought fwd by a month as I am supposed to be travelling overseas. I am both hopeful I will have the same ‘energising’ response as last time, but worried after reading these adverse experiences as I would hate to have issues whilst in USA (within a week of having the infusion). I also had anxiety/drepression before diagnosis – and a secondary autoimmune Vogts Koyangi Haradas syndrome so it can be difficult to ascertain what is causing symptoms :/

  16. O says:

    Since on the drug, I started to develop acute bronchitis during the winter months. I am on ocrevus(ocrelizumab) since 2009. The situation is getting so much worse with these bronchitises, that for the very first time I am considering stopping taking Ocrevus any longer. I am in the middle of my third bronchitis this year!

  17. Patsey Wilson says:

    I go for my firsrt full dose of ocrevus Nov. 5, 2018. I was on tysabri for 9 yrs. prior to that, jc virus negative. I got on ocrevus because of the 1 time ever 6 mos. infusion, compared to tysabri once a month.ocrevus has disappointed me. I have not seen or felta change for the better. In fact, I feel worse with my walking, strength, depression, rash that want stop on my legs, hair falling out by the handfuls. I beleive it was a bad decision to get off tysabri, I felt more alive and functioned better. I want back on tysabri, but ny neurologist wants me to do the next first full dose of ocrevus, Nov.5th. I don’t want to. So I am having mri dec. 14, 2018, and I pray there are no new lesions. I did not get any new lesions while on tysabri for 9 yrs., and I felt much better. I am moving my mri date to nov.1, 2018, since my doctor made it for anytime I want to go have it anytime. Doctor asked me do I notice a change in ms etc., after the 1st 2 seperate 1/2 doses. I told her no, all my symptons have exaserbated. Especially my moods, thoughts, and hope. Something is not right, and I know ocrevus is not for me.

  18. Allison says:

    Started ocrevus at the begining of August. Diagnosed with RRMS. I am very active and live a balanced, healthy lifestyle, but I have experieced some weight gain since then. Has anyone else had a similr side effect?

    • Angela says:

      Hi Allison, I too live a healthy life style and I have gained some weight. Not liking this symptom so I’m trying to just eat as clean as possible.

  19. Michelle Burnett says:

    Started Ocrevus in May 2018 had 2 half dose and will have complete dose in November. Have RRMS and at first felt great but now it has not been great! No energy now, fell in August and had MS Hug today. Worry I will have relapse before full dose in November. Anyone having problems in “between doses? Thanks

  20. Theresa Pekelder says:

    I had my 1st 1/2 dose today. . .and don’t know what to think! After 2 Tylenol, a Zofran, a Pepsid, a Benadryl,and a steroid, they had to stop the infusion an hour in for more Benedryl and Pepsid, then a half hour later started again. Another hour later the same. It was finished about 4 pm. We live 100 miles away, so drove home…now 4 hours later, I’m achy, mostly back and neck, have a headache, and itchy. I took a Benedryl and it helped, but eye pain too. Has anyone had all of that?

    • Yes, my past 2 infusions of Ocrevus have left me with bad side effects including, headache, dizziness, severe backache, leg pain, stomach upset, coughing, flushing, rapid heart rate.The extremely bad fatigue afterwards lasts at least 4 to 5 weeks. I haven’t felt any for sure easing in ms symptoms but my depression seems moderately worse. Ugggh, overall, not thrilled.

  21. Becky Johnson says:

    I have been on Copaxone as my DMD for the past 5 years. I have progressed from a 3.0 EDSS score to a 6.5. The progression has been slow and my MRI’s have shown no new lesions. I use a walker with two Bioness L300 devices for footdrop. My physician suggested that I consider switching to Ocrevus after the first of the year. To be honest, the side effects scare me! I am rarely sick and I’ve been able to continue babysitting my grandchildren. Most days I feel pretty stable! I’m really questioning from what I read here if I should switch and take the risk! I’d appreciate any comments! Thank you and good luck to all your warriors out there fighting this monster disease!

    • Jennifer says:

      Becky, I don’t think you will know unless you try. I had my first full dose and still don’t feel any different. They are so good about the first half dose monitoring it and your reaction so slowly. If any negative effects present themselves, stop. Otherwise it might not hurt to continue.

      • Becky Johnson says:

        Thank you for your response Jennifer! I am still trying to decide what to do! It seems like those it works well for do well, but those that don’t really don’t! Thanks for taking the time to respond! Keep up the good fight!!

  22. Chip says:

    My wife had an infusion this past summer. A couple of months ago she got a sinus infection and had to be hospitalized. She has had multiple anti biotic treatments and her immune system is so compromised she cant fight
    them off. She has been in a wheel chair for a few years but is now is too weak to do transfers by herself and can’t even turn over in bed. I am glad it has helped others but would advise caution with advanced MS.

  23. MaryMargaret Anthoine Ney says:

    I had my first 2 doses in April. Felt no changes at all. I haven’t been sick at all. Just before my first full dose in Oct. I started having problems with my left leg – a buzzing and feeling like I had stuck my finger in an electric socket. Very intermittent. Had my 2nd dose as prescribed. In the last couple of weeks my leg problems have progressed rapidly. I am now having a hard time walking. I thought Ocrevus was supposed to stop the progression of the disease. When I first complained my doctor ran tests. My CD19 was zero, which is what is hoped for. I was also tested a third time for NMO and MOG. Negative. Prior to this my only symptoms were in my left hand and arm – pain in web between thumb and index finger; swelling of thumb and index finger; “weakness” in remaining fingers; burning/itching of left arm up to my shoulder; a very sensitive area at the top of my arm, and a sore scalene muscle. These symptoms started in early Sept. 2016. MS confirmed with multiple MRIs. Help came with Gabapentin, Nortriptyline and Baclofen. No relief now. Am seriously thinking Ocrevus is the culprit.

  24. Susan says:

    I have no side affects from the infusion. No infections I guess is main concern. A major setback in walking, using wheelchair more. Legs very weak.
    I think men might find improvement because they are the dominant gender. High emotional feedback or just too much to handle is negative.
    The stress on my husband taking care of two people, when we have our grandson. His emotions are escalated.
    Negative feedback from my husband. I plan a change soon, diet changes & positive energy only. PT going well. More leg strengthening. My arms are so sore from using them to walk with walker. Any sugg?

  25. sophie sherriff says:

    I came off Tysabri after 16yrs of infusions as my JC count was rising and PML was becoming too much of a threat.(I was in the initial strata group, and received the drug every 4 weeks and later every 8 weeks from the trial beginning)

    I have now had 3 infusions of Ocrevus (spilt initial dose and two subsequent infusions)
    With the 1st dose, I experienced:
    • vertigo for 3 months: think stepping of a merry-go-round
    • I was unable to safely drive
    • I could not read screen text with out wanting to be sick
    • I was unable to travel in a car without feeling extremely dizzy and wanting to be
    sick
    • My fatigue levels were way more pronounced

    The 2nd dose was like having my batteries recharged. This feeling lasted for 2 weeks then my usual fatigued state returned.

    With the 3rd dose I am dizzy again (7 weeks and counting). It is not as extreme as was with the first dose, this time I am bobbing about in choppy water. In warmer weather and later in the day the dizziness is worse.

    If you are JC free, and have RRMS, I would seriously consider choosing Tysabri over Ocrevus. Being free from side effects makes life so much more tolerable.

    FYI: I have only experienced dizziness in warmer, summer weather. If I decide to have another dose, it will be winter so may have the battery-recharge effect!

  26. Chelle says:

    I had three infusions with the Orevus and I feel extremely fatigue, balance is off, spasms, weak legs and numbness has spread to my feet and toes. My next infusion is in March 2019, but I do not think I will have another Ocrevus infusion. I am using a cane and never had to use one prior to taking the Orevus. I tried it and it is not working for me at all.

  27. Erika Faber says:

    After reading most of these comments, I wish I could have found this article prior to starting Ocrevus. I had my first two half doses in October. Both times, had to stop during the infusion due to severe itching for more benedryl. Since then, it has been down hill. I am weaker, I sleep even more than before, more GI upset, my hair is falling out in handfulls, I am more emotional than I can ever remember, irritable, and don’t want to be around anyone. And don’t get me started on the instant weight gain! My neurologist wants me to give this one year, but I don’t know if my family can handle this for an entire year! Then, can I really deal with this for another round!?! Having MS for all of my adult life, this has been my all time low while on this drug. That’s 20+ years of other MS drugs with minor issues. Makes me re-evaluate the next infusion. MRI coming up….will go from there.

  28. Kathleen says:

    I have been on ocrevus for 2 years . I have experienced weight gain & water retention in my stomach area . Stomach is hard & uncomfortable. Anyone else experiencing this ?

  29. Sylvia Horton says:

    I had my 1st half treatment a week ago. I had the typical allergic reaction during infusion,but I have had a positive experience. I know they said probability of improvement takes a bit, but the fog disappeared the next day for me. I went home rested after treatment and next day it was a different world. I still experience fatigue but to me it’s like a “normal person’s fatigue”. Only complaint is headaches, nothing tylenol isnt fixing..2nd half treatment next week… can’t wait to see how it goes..prayers for us all this is a horrible disease to battle even on the good days…

  30. Cchick12 says:

    I have had my second full dose of Ocrevus and during my full dose I had quite a nasty reaction to it I was non stop vomiting so bad that they had to leave my port accessed and wheel me to the ER and I spent 8 hours there getting my nausea and migraine under control. Then two weeks later I had an MS relapse (I have RRMS) and a bad go with my secondary condition of ophthalmoplegic migraines I’ve had since I was 2(this was my 12th hospitalization). I could feel the medicine working in my head if that doesn’t sound weird. I have very aggressive MS in my brain over 30+ plaques, lesions, Dawson’s fingers etc so it was either Ocrevus or Lemtrada for me. I can’t have tysabri. I was hospitalized for 8 days. I lost 10 pounds. The day after I could tell I was getting sick and got pharyngitis and bronchitis real bad. Needed antibiotics. After my first infusion I got sick with sinus infection and bronchitis that required antibiotics as well. I am obsessive about hand sanitizer because I know my body had changed and my heating time has changed. My hair has been falling out..and I have had my thyroid checked so it isn’t that..and my only med to change is my Ocrevus and that scares me. Both hair and eyebrows. Like whole root and everything. Anyone else? And I love my hair. It’s down past my butt. And long and curly and beautiful(it’s my one vanity I have left being sick and disabled). I never even trim it. Or dye it. And I’m pissed off. List it as a side effect! Genentech! I ASKED! I even had a Genentech nurse..

    Why I didn’t take the chemo drug lemtrada at 31. So heads up. But I digress…

    And now the good..I haven’t fallen lately…so I can walk better. And some of my plaques are shrinking. Even though I have a big new one mid brain. And I have no spinal lesions. Which thank god! So it halted the damage from working its way down. And I can drive some days which I couldn’t before because of weird balance and dizzy issue and couldn’t tell if the car or road was moving and that went away. I don’t shake as bad in the mornings when waking up. I do have more energy overall most days.

    And I want to say that over my life I’ve taken a lot of high dose steroids (esp for my migraines) too so that could also be the cause too of what’s going on but I suspect it’s from the Ocrevus. And other side effect I get all the time now like every week is red rash on my chest. Arms get it too. Really weird.

  31. Jen says:

    Well Crap.
    That’s all I can say.
    I started on Avonex in 2006, for 7 yrs. Weekly, horrible, migraines that lasted for 2 days. It killed me thyroid too. Now on meds for that! Needle fatigue and just couldn’t stand the side effects anymore.
    Was switched to Aubagio 3 yrs ago. Distended belly for 4mo. I had, HAD, a head of thick brown hair. At the 5mo mark, I lost 1/2 the volume of my hair. It just fell out. Some came back, but not much.
    I have new lesions, and this time I let my Dr make the choice for me. What would be best for me, and the efficacy for the disease? He immediately said he would choose Ocrevus.
    I’m now scared after reading everyone’s story, but trying to stay hopeful.
    Hoping everyone stays strong in every sense of the word.

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