As some of you know, I started Ocrevus infusions several months ago on June 22nd. After making it through infusion reactions and a week of wipe-out following each of the initial two half-doses (two weeks apart) I was back at my baseline no worse for wear. By mid-September, if not a little earlier, I was seeing some very positive signs even if they weren't always sustained (I continued to have good days/bad days, but the good days were getting significantly better). On September 11th, I had MRIs of my brain and cervical spine, as my MS specialist wanted to obtain a new baseline 2-3 months after starting the new treatment. Unfortunately, the MRI of my brain showed one new, 1 cm. lesion, which is apparently pretty good sized as lesions go. This was the first and only new lesion in two years since my initial MS symptoms, when MRIs revealed two dozen lesions in my brain and one in my spine at C-7. My MS began with a bang - literally knocked me off my feet and out of the blue one day, and I couldn't get up, or walk, or balance - at all - for the next several months. Gradually, I rehabbed my way back and have had impaired, but decent function since. That's a brief history for context.
The abrupt and dramatic onset of my CNS woes was very atypical for MS, and occurred in the same time frame in which I was developing symptoms that most closely resembled a serious connective tissue disease (systemic sclerosis/aka scleroderma). My medical team (I have a team!) was baffled, challenged, and searching for a link or trigger to tie the conditions together (we found one, but that's another story for another day). Too often, treatments for one condition were contraindicated in the other, particularly with so much uncertainty surrounding diagnoses. Frequent repeat MRIs stayed stable, and doctors thought it more prudent to watch and wait for awhile. That worked for a time, but the CTD symptoms were worsening, my walking was deteriorating, and it was agreed that it was time to treat. Rituxan was already being used off-label to treat both MS and systemic sclerosis with encouraging results, and Ocrevus was about to be FDA approved. My neurologist and rheumatologist decided that Ocrevus was the best choice to try, and said it showed promise in PPMS (my tentative diagnosis) and should be "at least" as effective as Rituxan for scleroderma and related connective tissue diseases. It was settled, and since I had started to go slowly downhill and was gradually losing considerable quality of life, I was more than ready to try something.
However, while waiting for my first infusion, I had a sharp setback, as I call them, and spent a couple of weeks mostly in bed too weak and fatigued to do much of anything. Looking back, we strongly suspect that time period was when the new lesion formed, but of course we can't prove it. New MRIs were briefly considered at the time but were ruled out and my neurologist said a new baseline after starting Ocrevus would suffice.
So, here we are. The good news for people following those on Ocrevus is that everyone seems quite certain that the new lesion formed before the full effects of B-cell depletion took effect. The possibly worrisome development is that I have once again taken a turn for the worse. The past week or so has been very difficult. This time my neurologist wants a new set of MRIs but said he will be stunned if they show any additional new activity because they just don't see that with B-cell depletion. We'll see. Something's definitely going on, and I've been struggling all week. The MRIs are still a couple of weeks away, I think. I'll update if/when anything changes or when I get the results. So sorry this is so very long - I thought I'd share a little more of my story since many are interested in Ocrevus. For what it's worth, I haven't soured on the treatment at all and remain hopeful and optimistic in the long run. I was told in advance that the best results occur further out, it takes time, and my own research backs that up. I'm staying patient and positive, but it sure has been a rough week!
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dianekjs
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dianekjs again I will say how brave I think you are. All of you that start this new treatment Ocrevus without any back up of any good results. In a way you are all giving of yourselves in a hope of it working. I hope and pray that it does and that you can get some quality of life back. I am so sorry Diane that you are having such a rough ride on this ms roller coaster. Thank you for sharing your results, it will help many people on here. Take care, blessings Jimeka 🦋 🌈 🤗 💐 🍫
Thanks @jimeka I guess we all have different perspectives and each have to chart the path that seems to make the most sense for us. For me, the ravages of MS left to progress unrestrained is scarier that the potential risks of a drug developed to try to restrain it. The trial results also did show very good results, so I take considerable comfort in that as well. I hope you are doing better than you were awhile back, I very much appreciate your thoughtful comment. <3
I'm really sorry to hear about your present condition, dianekjs . I pray there isn't a new onslaught of progression, and that you start to feel 'more like yourself' soon. Thanks for the update. Please keep us informed. 💕
Thank you @Tutu, I do fear new lesion activity, but am hoping the benefits of Ocrevus borne out in the trial data will kick in and bail me out of this setback soon. I will be sure to update if anything changes.
dianekjs I'm sorry to hear you are having recent set backs. I hope that there are no new lesions when you have MRI and that this may par for the course of your treatment. So happy that you have a positive outlook on the treatment to spite the setbacks your are experiencing.
Please keep us updated when you can. Gentle hugs on the way.
Thank you for your very complete report. We all need data and you have provided a lot. I did not know that scleroderma is systemic sclerosis. Thanks for the new learning. I'm wishing you the best of luck and hope the new MRI shows exactly what the doctor predicts. More importantly, I hope that the symptoms quiet down and you are back to feeling like you can't handle anything.
@YLGram, thank you for your very kind comment, and I'm glad you found my post informative. Systemic sclerosis is systemic scleroderma and affects internal organs as well as (usually, not always) the skin. There is also a localized form of scleroderma that affects primarily skin and is quite different (morphea is the most common type of localized scleroderma).
Thank you for the update! I hope the assumption about the lesion being there before B cell depletion is correct and you can maintain some improvements soon. Good on you for being optimistic and hopeful 🎉
Linda3579 , thank you for your thoughtful message, it means a lot. I'm sorry you are feeling worse since making the switch but hope the longer-term benefits will be significant and as you say, "kick in soon." I'd love it if you would keep us up to date on your experience, and will be thinking of you and send warm wishes your way.
dianekjs thank you for a very informative post. I am 70 and I believe more wrong with me than MS. Gonna check out what you listed. I am on my 3rd DMTs and none are helping and allergic reactions to all of them. Will look forward to your progress. Have your multiple brain lesions cause loss of emotional control or loss of cognitive abilities? Mine have, and it is so frustrating, besides the pain and fatigue. I couldn’t have stayed sane this many years without the assistance of God.
agapepilgrim , a notification brought me back to this post and re-reading the thread I noticed I never replied to your question, I apologize. No, even with 40 lesions I have been fortunate not to have experienced any cognitive decline or issues with emotional control and count my blessings regularly in that regard. I’m sorry you’ve struggled with this, that must be very difficult for you. How are you doing now? This post is quite old by now.
I really appreciate your lengthy update. I have my 6 month check up on Tuesday and I will be asking about changing from “symptomatic “ meds to DMT’s or LDN. I’m not afraid to try whatever’s, just went numb June 28, 2016. DX Dec. 2016, been turned down for 2 trials as soon as I enter my age of 69. I just want to be my best possible for whatever time I have left!
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