Last reply 6 months ago
Starting Tysabri on Monday

Hi,
Had MS for approx 16yrs. I’ve been on Avonex and over the past 4yrs Gilenya. Unfortunately both didn’t work for me and my last MRI showed my MS was still highly active and had acquired a number of new lesions despite being on Gilenya.
Lemtrada was discussed but apparently the change from Gilenya to Lemtrada has not gone so well for some patients so it was decided I’m going to start tysabri and that will be on Monday at the Sunderland a Royal hospital.
Has anyone else gone from Gilenya to tysabri? Any advice or tips you can give me? Anyone on tysabri at Sunderland royal or nearby?
Eager to get it started but a little nervous too as I’m JC positive.
Thanks!

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gates1989
1 year ago

Hi @im24 I am starting Lemtrada in Feb from
Gilenya, nobody said anything to me about it not going well but we will see what happens!!
I was on Tysabri for 5 years prior to Gilenya, all I can tell you is that it was an absolute miracle for me!! Best decision I ever made. Totally gave me my life back I hope it works that well for you ? Good luck xx


lm24
1 year ago

Thanks gates1989
My neurologist talked about a patient who had a bad relapse after switching from Gilenya to Lemtrada but everyone is different and that’s only one patient. I wish you luck for starting Lemtrada in Feb too. As you said we can only see what happens and give these treatments a try!
Pleased you got on well with tysabri that’s good to hear.
Good luck ?


gates1989
1 year ago

@Im24 thanks I’ve got everything crossed for some results from Lemtrada,
Tysabri really was my miracle juice, if I wasn’t JC + I would’ve stayed on that forever! X


sarahbee
1 year ago

I was on Gilenya and about to switch to Tysabri. So I will let you know. I am JCV+ so it’s not without its risks.

Gileyna was a nightmare for me. I lost 3 months of my life when lymphocytes plummeted and I had to stay indoors as I was constantly ill with infection after infection. And as for Tecfidera! Lasted six weeks on that as couldn’t hold food down.


lm24
1 year ago

I’m due for my second infusion this coming Monday. First infusion went well with no side effects so hoping I will get on well with tysabri hope you do too.


rubyroo
6 months ago

Hi Im24 , just wondering how you are getting on tysabri? I looked at your profile and I too have had MS about 16 years ( I am from Sunderland originally too! ) been on Rebif and now on Gilenya for past couple years. Not doing too well on It at moment and I think I may need to change treatment.. I see my neurologist in a couple of weeks so I want to go prepared….


lm24
6 months ago

I’ve sent you a private message rubyroo 😊


cameron
6 months ago

Just wanted to say how very valuable all the tips and information on past experience are. It’s stuff that can inform discussion with the neuros, thank you. x


arknat
6 months ago

Hi @lm24

I’m on Gilenya as well. Has been good to me this far (~2 yrs.). Gilenya basically blocks lymphocytes in the lymph nodes to prevent them from entering the CNS which in turn stops inflammation and damage. There needs to be some time (2-3 months) after discontinuing Gilenya to ensure all ‘rogue’ lymphocytes are out of the lymph nodes first. Another treatment that targets the ‘rogue’ lymphocytes immediately is not advisable as they continue to come out of the nodes. This is the main reason for the relapses caused starting Lemtrada immediately after discontinuing Gilenya.

I do not think there’s an issue starting tysabri treatment immediately as they stop the rogue lymphocytes from entering CNS on a continuous basis unlike Lemtrada.


wjgregg
6 months ago

I’ve just had my fifth Tysabri infusion. I have had no side effects so far, and am perfectly happy with it. My multiple sclerosis was diagnosed last summer after two bad relapses within three months of each other, the second of which put me in hospital for three weeks. The M.R.I. scans showed, not surprisingly, that it was rapidly advancing so my neurologist got me on Tysabri very quickly. I’m very happy to say that there have been no further relapses.

Good luck with the treatment.

Best wishes,

Jon

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