Last reply 1 week ago
What should I do? Any advice?

So I have only had 2 infusions of tyabri. I know it takes about 6 months to build to therapeutic levels in your system. I have reached the point that I have a relapse every 3 weeks. (I’m not wanting to hear about how you can’t have more than one relapse or more than 1 MRI every month.) Because it does happen for me. My dr knows I’ve only had 2 infusion but feels she should see even a tiny bit of progress and my ms is not letting up. Like clock work every three weeks it happening. My dr explained no one dmt is better than another its just what works for you. Kinda like not one size fits all. I hated hearing she wanted to switch my medication but she is excellent at what she does and is board certified in the us and in Europe. So she knows what she is doing. She mentioned ocrevus and lemantra and I was wondering what your experiences are. Which would you try first?

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mlgilber1
3 weeks ago

I’m so sorry you’re going through such a hard time and it is difficult finding a DMT that works for each individual person. I’m on Ocrevus and have had a great experience so far. I was having a lot of relapses as well and my MS was considered aggressive. I’ve only had my first two half infusions, but started doing great after a month. My walking has picked up pace and I no longer need my walker or even the ampyra. A lot of my tingles have gone away as well as the cog fog and memory issues. I rarely have spasticity, no more swallowing problems, or urinary retention. I had a slight infusion reaction the first time, just an itchy scalp, but none the second time. It is an immunosuppressant so you just need to be careful. I did get a UTI shortly after as well as the shingles, but other than that I love it so far. I’m getting an MRI next month to see if it’s made a difference slowing the progression so I’ll keep you updated. Best of luck and I hope you start doing better!


rachschader93
3 weeks ago

Thank you for your input and please do keep me updated.


stumbler
3 weeks ago

@rachschader93 , I am sorry that your MS causes you such problems with such regularity. Every three weeks suggests that there is a trigger for this. Does your Doctor not have a view on this?

Ocrevus or Lemtrada is a difficult comparison. You’ll find MSers that are on one therapy, or the other, but not experiencing both. Your Doctor should have a view on which should be best for you, based on the side-effect profile, patient feedback and their appraisal of the medical research behind the treatment.

Good luck with whichever you choose. I really hope it breaks this horrendous cycle for you.


rachschader93
3 weeks ago

She has been speaking to me through the neuro team in the hospital and she has went to be with family in Italy so I’m guessing it’ll take her a few days because Christmas is here. They have tested for things that mimic Ms but nothing has turned up. I’m starting to wonder and this is speculation so educate me if I’m wrong so I was diagnosed July 2017 did excellent until January 2018 when I had my first major relapse after diagnoses. Got on tysabri March 2018 took 1 infusion and moved 4 hours away and had to get a new neuro. His office wasn’t equipped to do regular monitoring on tysabri. So my neuro put me on avonex September 2018 which was a big mistake. In April I had a gallbladder removal. Moved neurologists and got tysabri and have had 2 infusions. Wondering if I had stayed on tysabri this whole time and not have switched drs I wondering if I had something consistent months ago would things be different for me? Because the neuro at the hospital I just saying I have a very aggressive form of rrms.


stumbler
3 weeks ago

@rachschader93 , this year hasn’t been a good year for you. Your MS therapies could have been better, but that’s all in the past now. It’s done and can’t be changed. You have to move on, dealing with the present and protecting the future.

So, when did the three-weekly relapses start in this timeline of events? There must be a trigger for this. It needs to be identified and avoided.


rachschader93
3 weeks ago

I started July of this year. I’m thinking the tyabri may have something to do with this but that was just speculation. It started about 1x a month in July and I want to say in October it started ever 3 weeks.


stumbler
3 weeks ago

@rachschader93 , so, the monthly/3 weekly relapses started before you started the Tysabri infusions?

What are the symptoms of these relapses? Do you recover each time or are you slowly building up a disability?


rachschader93
2 weeks ago

I only relapse every three weeks. Everytime I have a relapse my symptoms are different depending on the placement of the lesions. I know im going into a relapse when I have tell/tell signs of having a new lesion if that makes sense. I’m overly emotional and I have problems with my memory. I just got out of the hospital and sent back to rehab. I did a 3 day course of steroids then I was having more symptoms pop up so they did a 3 day course of plasmapheresis. (Which I hated that port in my neck.)


mlgilber1
2 weeks ago

I love plasmapheresis, but also hated the port in my neck. The next day I had them take it out and put one in my chest instead which was slightly better. Itched like crazy because I’m a little allergic to the adhesive on the bandages. I also had them change it because they were discharging me and said they were going to put in a permanent one, but then decided not to and I was going to see my son and didn’t want him to freak out seeing the one in the neck. I hope you’re doing better.


rachschader93
1 week ago

I am just now seeing you replied. I started to improve after a few days. For how long I couldn’t tell you. I’m back at rehab and in about 5 days I’ll be discharged thank goodness. @stumbler you may be able to answer my question. Tysabri works differently in the system because it simply blocks and binds all bad cells. Ocrvus works by just targeting b cells and pops them. So im kind of scared to take it. If tysabri didn’t work for me im scared any DMT will?


rachschader93
1 week ago

I am also scared of lemetera because I’ve seen so many bad things about it.


stumbler
1 week ago

@rachschader93 , I can understand your concerns about side-effects on all DMTs. But, you have to appreciate that drug manufacturers are legally obliged to detail any adverse reaction that they have seen in the development of the drug.

With this in mind, check out the Patient Information Leaflet for a headache tablet. It may have a side-effect of causing……………………a headache!

Each of the DMTs have a different way of working. The following thread may be useful as it explains @dominics ‘ rationale for selecting Ocrevus :-

https://shift.ms/forums/topic/ocrevus-friday-if-all-goes-to-plan


dominics
1 week ago

Lemtrada and Ocrevus are not the same. I’d turn the question around to my neurologist and ask them to give me reasons for and against both – in the context of my condition, no one else – and the ask them what is the best clinical choice.

Why on earth should you have the burden out onto you? Furthermore, they are the expert and ought to have a clear idea of how they intend to manage you, as an individual.

Best,

Dominic


rachschader93
1 week ago

Thank you both. They both scared me. Lemtramada scares me because of all the bad I see from it . And I really don’t think ocrevus will cover me at 100%. I know they all work differently from one another but if tysabri didn’t work for me which pretty much kills all bad cells what makes me think with it killing b cells it’ll be better? Her wanting me to switch just kinda threw me off. It made me think that if tysabri doesn’t work what will? I have only heard of people coming off of tysabri because of high jc levels not because the medication wasn’t working for them. My doctor had been speaking with me through email on a patient portal. She will respond but she responds slow due to her being a very busy person. But I was thinking I could get an answer here. I’m sorry im being really impatient and should be.


stumbler
1 week ago

@rachschader93 , all DMTs are powerful and scary drugs. But, there again, MS can be a scary condition, with the impact it can have on your life.

You have to appreciate that we are all different and are all affected differently by our MS. It’s why things work differently for all of us.

You seem to have faith in your Neuro, so she must have valid reasons for wanting you to switch therapies. So, do you opt for Lemtrada or Ocrevus? You just have to do your research, get advice from your medical professional and go with your gut.

Sorry I can’t be more specific.


rachschader93
1 week ago

That answer is great. I pushed for tysabri which is why I landed on her being my neuro because my other neuro was equipped to do testing while I was on it so she took me on. I have pushed for this for a while and when I got it I was like “finally I can get some peace.” But I was wrong. So I don’t trust my gut anymore.

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