Last reply 1 week ago
Switch from Tysabri to Lemtrada?

Hi! I am new to Shift.MS. The reason I joined is because I am trying to decide about a possible change of medication. A little about me,I am 65 and was diagnosed with MS 35 years ago. I actually had symptoms starting 15 years before that but it wasn’t until I had an attack of optic neuritis that a doctor was able to diagnose my MS. Actually that one attack of of ON and an another attack of double vision 10 years later where the only exacerbations I have had in 35 years. I do have other symptoms but those haven’t changed that much over the past 35 years. I don’t have any problems with mobility and I usually walk 3 miles a day or ride and ride my bike 12 a day and go to the gym about 5 times a week. I had been on Copaxone from 1999 till 2014 when I switched to Tysabri. My MRIs have been really good except for one new lesion back in 2012. That was my reason to switch from Copaxone to Tysabri in 2014. Tysabri has been very good and I am still JCV negative after 4 years. The only reason that my doctor suggested that I might want to consider Lemtrada is that my OCT scan showed a thinning of my retinas. He said there is no guarantee that Lemtrada would work and if it didn’t I would have to wait at least 18 months before going back on Tysabri. It is really hard to decide what to do and my girlfriend is that keen on me changing therapies because I am doing so well right now.What do you guys think?

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stumbler
1 month ago

Hi @criswell and welcome. I applaud your lifestyle, that’s a good example to set.

Your Doctor is “on the ball” about your retinal thinning, as this can be a problem with Tysabri.

Lemtrada would seem to be an acceptable and equally efficacious choice of Disease Modifying Therapy. My only concern would be the Tysabri “washout period” and the risk of the “Tysabri Rebound” relapse. Hopefully the lack of activity in your MS over the years would hold you in good stead.


avengr13
1 month ago

Another alumni of ms! Congratulations, really. We are still going strong so it is possible. It’s not always a death sentence


psmarson
1 month ago

Hello @ chriswell. I’m happy to hear how well you’re doing since you’ve had the disease so long. Lemtrada has a lot of risks especially for older adults. It toasts your immune system and then it assumes the immune system will rebuild. I believe it was originally developed from the group of drugs used for cancer. Please read the available documentation on the internet before you start taking the drug. Another one that was just approved in Canada and the US is Ocrevus, which is becoming popular. It has its own risks as well.

I’m 62 and my neurologist would not consider either drug for me because of my age.

Tale care.


criswell
1 month ago

Thanks for the replies,I really appreciate all the support and info. I haven’t made a decision and really don’t feel in a rush to do so. I tried to explain how Lemtrada works to my girlfriend and she said “So basically you would be giving yourself AIDS” lol.


londonlad
1 month ago

@stumbler

Just wanted to ask about your statement,

“Your Doctor is “on the ball” about your retinal thinning, as this can be a problem with Tysabri.”

I’ll be having an appointment with neuro soon and keen to understand this.

I’m on Tysabri too, @criswell, and while I’ve been doing (touchwood) pretty good. I do often wonder whether I should have gone straight for lemtrada.
I had been hoping to move over to ocrevus but doesn’t really seem as easy a switch as I wanted:

All this stressing about different meds etc. Is it too much for them to find a cure already 🙏

I also applaud your active lifetysle. I hope I can still be doing all of that, 30 years from now 😊


stumbler
1 month ago

@londonlad , I must admit that I didn’t read the research that thoroughly :-

https://www.jwatch.org/na43468/2017/02/16/impact-disease-modifying-therapy-retinal-thinning-multiple

It does in fact mention a few DMTs……


embroideress
1 month ago

@criswell Wow, congrats on your health and active lifestye even with ms! I don’t know anything about those dmts, (I recently started Plegridy) but I’m in France, and the doctors I’ve seen tell me they stop treatment at 65 because ms stabilizes as far as relapses are concerned and some people move to SPMS. So I’m curious to know how long treatment continues in other countries. I’m 57, diagnosed this year after having optic neuritis at 17 and no noticeable relapses for 40 years.


gijs
1 month ago

@criswell – I don’t know, do you have to change? I mean, is it urgent? If your stable, nothing bad is happening, talk with your neuro and work-out some kind of a deadline that would work for the both of you.


criswell
1 month ago

Thanks for the posts everybody! My doctor didn’t give me any deadline,just left it up to me if I wanted to make a change. Don’t know if I will because I am not sure that Lemtrada will do anymore for me than Tysabri is doing already. Need more info but it is hard to find studys that include older MS patients or those that compare the results Lemtrada vs Tysabri.


criswell
1 month ago

Yoga is very good for MS.This is my teacher she specializes in Eishens yoga which is a kind of restorative yoga. You can see all her videos on youtube


criswell
1 month ago

Ok so according to this study:

https://multiplesclerosisnewstoday.com/2016/09/20/ectrims-2016-lemtrada-tysabri-most-effective-therapies-for-ms-study-confirms/

“no differences in ARR and EDSS progression were found between Lemtrada and Tysabri, although the likelihood of EDSS reduction was higher in patients under Tysabri treatment.

Both Lemtrada and Tysabri show similar effects on relapse activity, although Tysabri is associated with a greater reduction in disability.”

So I am not sure that I would really gain anything by changing therapy at this time.


criswell
1 month ago

According to this article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5225231/

“alemtuzumab is not suitable for patients with inactive relapsing-remitting multiple sclerosis, those stable on current therapy, or patients with progressive multiple sclerosis”


criswell
1 month ago

I got a message from my infusion clinic that my latest blood tests are still JCV negative and when I called my doctors office to ask about when I need to come back they said I just have to come for my next neuro exam in March. I asked them to send me the chart notes from my last exam so that I can get a better understanding of what my OCT Scan and MRI findings show. I’m really in no rush to change to Lemtrada and it doesn’t seem like the doctor thought it was urgent or he would have said so,don’t you think?


criswell
1 month ago

So I looked at the doctors chart notes, doctor just has a slight concern for worsening because Tysabri is still doing what it is supposed to do my MRIs show no disease activity and JCV is still working. My neuro exams are good and my EDSS is back down to 3.0. TW may show a slight worsening but I don’t put to much stock in that. It goes up and down depending on the observer. Doctor is basically offering me Lemtrada as an available option but since their is a lot to consider in making a switch he is leaving it up to me.


criswell
1 month ago

It is just the OCT scan that shows a worsening(2 microns of change).


criswell
1 month ago

I meant to say my JCV is still negative in the post above.


criswell
1 week ago

I had my yearly physical exam with my regular doctor(internist) yesterday and he said that I am in good health with no issues. I asked his opinion about switching from Tysabri to Lemtrada.He said that since my neurologist only has a slight concern for worsening of my MS he suggested that I wait until at least my next MRI/OCT scan in 2019 before making any changes.

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