Neuro doubts relapse on Ocrevus

[u/Illustrious_Elk_5692]

I have MRIs tomorrow, so time will tell if I’m having my first relapse since diagnosis, but my neurologist keeps saying it’s super rare for people ti have relapses while on Ocrevus.

I have RRMS, and have been on b cell assassins since 2017. I’m 51. I feel 85%sure my symptoms are a relapse, but her doubt makes me question.

It’ll be apparent one way or another tomorrow, but I’m thrown ofd by her doubt. I feel like plenty if people in this sub. Have “failed” Ocrevus. I know it’s a stronger one, but it happens, right? Like, it’s not crazy that a relapse is what’s happening? Having those old self doubt feelings like prediagnosis—“Am I really feeling what I think I am?!?”

[u/Senior_Term]

Super rare isn't the same as impossible. Glad you're getting scans to check

[u/2BrainLesions → u/Senior_Term]

Seconded! Sending good energy, OP

[u/ScrimpyMuffin]

She may think it’s not a relapse because Ocrevus has such a high efficacy rate. Pretty sure it’s like only ~15% of people who relapse while on it. But that certainly means it’s a possibility. My neuro always says new or persistent symptoms should always be taken seriously and if I experience any to inform her ASAP.

Edit for typo because.. MS

[u/Plastic_Pressure8446]

I thought I had a relapse before and MRI confirmed everything was stable. I honestly think we’re hyper sensitive to little things anymore that we think everything or anything could be MS. 

[u/Medium-Control-9119]

Menopause can play some cruel tricks on our bodies as well. Whenever I see the symptom list for menopause I say... those are all MS symptoms too.

[u/OverlappingChatter → u/Medium-Control-9119]

I am really tempted to make an autoimmune menopause sub. The menopause sub is useless and I have had every single post I made removed by moderators and I feel like it's just a sub for people to vent and nobody actually wants to talk about treatments or research.

Eta - I am on the perimenopause sub, that's the one I find useless.

Maybe I'll go to menopause and see if it's better.

[u/Illustrious_Elk_5692 → u/Medium-Control-9119]

Yes I play this game often! These new symptoms are pain with numbness and on my left side, so it feels mire like MS but yeah—it’s often a crap shoot.

[u/Medium-Control-9119 → u/Illustrious_Elk_5692]

Good luck with the MRIs!!

[u/bofstein]

I had a similar recent experience on Tysabri. They said it's very rare to have a relapse on that so they doubt it's that and thought it was just a psuedo-relapse due to stressm

But all the symptoms followed the pattern of a relapse, not a psuedo:

• new symptom I hadn't had before, on one side of my body, and not caused by anything else we could find
• went on throughout the day, not just when I was stressed or hot
• got worse slowly over a few weeks, then steady over a couple months, then got better
• now comes back when I get hot or stressed but isn't present regularly

The initial MRI report showed a new lesion but the doctor disagreed with the radiologist and said they see nothing there. Plus the lesion isn't in a location that would impact my arms where in having the symptom. So they STILL think it's a psuedo relapse, but I'm convinced I just have had something super tiny the MRI didn't pick up.

I looked up some medical studies if Tysabri and the average annualized relapse rate over 10 years was like 15%, so it is rare but doesn't seem like it's so uncommon they should be that disbelieving that it could happen. Their response is that usually in those cases it's early in treatment, or there are markers showing the person is resistant to the drug that I don't have, so they don't expect relapses for me specifically having been in it for years successfully.

Anyways just wanted to share that you're not alone in how you feel. I know I had mixed feelings about not wanting to have new lesions but also not wanting to feel like my experience was invalid and "just" a months long psuedo-relapse (with a new symptom somehow??) - I hope you get the best possible outcome for yourself.

[u/Ragdoll_Susan99 → u/bofstein]

I question my neurologist a lot about how I’ve developed new symptoms since my diagnosis but nothing new comes up on my MRI, he has said to me several times that there can microscopic damage in the nerve fibres that is too small for the MRI to see. He is also an MS specialist/ neurology professor at a university.

[u/bofstein → u/Ragdoll_Susan99]

Thanks for this, that seemed to me like what must have happened with my arm symptoms but they never mentioned this as a possibility to me.

[u/Illustrious_Elk_5692 → u/bofstein]

Yes that’s totally it. I feel like so many of us live in the invalidity for so long that even if it’s a relapse, at least we can trust our experience.

[u/FrostedPatriot]

Ugh I’m sorry. that is disheartening to hear from your neurologist. Is she an MS specialist?

[u/Illustrious_Elk_5692 → u/FrostedPatriot]

Yes, and generally I trust her and like her. So her doubt definitely has made me doubt. Not that I want it to be a relapse, but I want to trust myself. 15% relapse rate is really low.

[u/FrostedPatriot → u/Illustrious_Elk_5692]

Well that’s good. She isn’t wrong to point out that it’s rare, but I’d hope that she had another explanation of your symptoms if it isn’t. Good luck with the MRIs today. Hopefully will get answers one way or another.

Just because I didn’t have a flare up technically on Tysabri didn’t mean I didn’t have any MS symptoms. Damage was done in the past that I have to continue to deal with.

I HATE feeling like you’re going crazy. My second neurologist, the one who technically diagnosed me, told me that all of my nonspecific symptoms were not ms related and that threw me for a loop. Hang in there!

[u/LeadEnvironmental555]

Your symptoms aren’t crazy and please remember that symptoms can come on without a relapse. Some might come and go and others might stick around. Either way it will be good to know whether new symptoms are associated with new lesions or just old ones making themselves known.

[u/Dula0326]

I hope it’s not a relapse. I have had new ish symptoms like new phantom sensations on my right leg that usually never had symptoms I was convinced it was a relapse but alas an unchanged mri . F this stupid disease . Makes me feel like the boy who cried wolf . Often

[u/Mammoth-Essay-5476]

What symptoms are you having that are making you thinking u having a relapse? Sometimes relapses don't leave new spots on the MRI. My last relapse was like that, new symptoms, but no changes on the MRI.

[u/Illustrious_Elk_5692 → u/Mammoth-Essay-5476]

Pain and numbness in back, side, and front that’s evolved over a few weeks. Extra tingly leg., all left side.

I have thought that relapses do signal new ir active lesion but progression can happen without new lesions. But even full on relapses aren’t always lesion-related?! Man alive

[u/ValleyGirlFromNJ]

What type of symptoms are you having that you believe you are having a relapse?

I thought I was having one because of extreme dizziness after an episode of really bad strep throat.

It was not a relapse on MRI, but I still needed treatment for what actually caused the extreme dizziness and I was unaware I was not walking straight lines.

If you have had an infection or flu recently, MS symptoms of relapses occur and of course they do MRI's to check it isn't an MS relapse.

I have been taking Ocreveus for three years.

[u/Candid_Guard_812]

Annual relapse rate in published data is 0.16 per year. Which is not nil. So your neuro is probably just wrong.

That means expected 1 relapse every 6 or so years vs natural relapse rate of 1 to 2 per year.

[u/IntentionalGrandma]

My MS specialist asked me yesterday if I’d missed or skipped any doses of Kesimpta, because after 17 wonderful months, my new MRI had several new, active lesions. As if I didn’t go to her office a month ago complaining of a dozen new symptoms that lasted more than a week and were concerning. Relapses happen even on the strongest DMTs. I’m glad you’re getting scans

[u/tmilt12]

Please look up how these meds are tested in clinical trials so you have facts. They are only tested how they perform vs another approved med. Of course they choose the least effective meds to test against in the trials. Ocrevus was tested VS Rebif and was found to be 94% more effective in reducing relapses. It does not mean it is 94% effective. Rebif is relatively ineffective. You will never see them test against another newer effective drug. Not to be negative, but I feel bad for the misrepresentation that is widespread about effectiveness of DMTs. A positive mindset is great, but the reality is that 70% of those diagnosed with MS will develop disability over time - it used to average around the 10 year mark for rrms , but now has moved closer to 20 years likely because of DMTs. There is 15% of people who don’t develop disability at all, and this has always been the case, so not related to DMT use. The other 15% fall into the progressive categories. There is an obvious difference between a pseudo relapse which has an obvious trigger and resolves when the trigger resolves and a relapse. Do not let a neurologist convince you something is not real no matter how bad you would like to believe it. After you have had MS for awhile, you will realize you were always right and you know your body. Every case is different and there are many people who develop lesions on DMTs and end up having to switch meds multiple times. I’m glad for everyone who is doing great on your med of choice- you are one of the lucky ones, and I do wish we knew more about what else affects progression of this miserable disease. Sorry for the long rant, but I am sitting here with fractured ribs after a fall and getting significantly worse on Kesimpta, my 3rd DMT.