Last reply 1 week ago
Tysabri

I have been on Tysabri for almost two years now, I said from day one that it wasn’t the wonder drug for me?
Since last September I have been having low blood pressure, all blood tests and a heart scan are ok? The heart specialist reckons it is a combination of the drug and Neurological Damage???
I have a neurologist appointment on the 20th and looks like I may get moved to a new drug recently approved for funding (ocreluzumab)
I guess it can’t be any worse? Although I am obviously not a very good druggy!
I have Not been the same since coming off the Avonex injections.
Since our weather has warmed and having the latest infusion (Friday) I am the worst I have ever been? Dizziness, foggy headed, headaches, No strength and stubborn low blood pressure?
And I can hardly walk even around the house, it is so frustrating it makes me angry, frustrated and depressed!

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nicu_macsim
1 week ago

dont be depressed, sad… we are here for you. if tysabri dosent make you feel good then you have other drugs to help you, like Ocrevus, Lemtrada, Mavenclad, Mayzet ( depends on where you at). smile (even if you dont have nothing to smie about), breathing, meditation, exercises…can help you fight the depression and your ” threat bucket” ( worries, anxiety… etc)


kea21
1 week ago

Hi Nicu,
I am in New Zealand and we don’t have access to Lemtrada, Mavenclad or Mayzet? They are to expensive and our Drug funding agency won’t fund then, it has only just (October) agreed to fund Ocreluzumab which I maybe going to be put on? It is funded from 1 at December.
I used to run around the Mountains hunting deer etc, now I can’t even walk to the damn loo some days! Yes I know a lot are in the same boat, but doesn’t make it any less depressing!
Maybe I have progressed to stage two as my MS Nurse thinks?


nicu_macsim
1 week ago

i feel you. i am in the same boat as you. i use to run and play football/soccer and now i cant walk 1 mile (1.2 km) without resting in the middle of the road. i was fighing with depression too and still fight but i try no to let it win doing breathing, meditateing, exercising, take drug for depression. im on tysabri too. now in november it will be my 3-rd infusion. Tysabri, Ocrevus (ocrelizumab) and Lemtrada ( alemtuzumab ) are the 3 very best drugs on the market right now. and for you to pass to Ocrevus i can say that you are a lucky guy. we dont have it here in Romania. regarding Ocrevus ive heard that lift people from theyre weelchair and start walking on them own. soo i can say its good


kea21
1 week ago

Hello again Nicu,
Hopefully they will let me onto the Ocreluzumab and it stops this low blood pressure issue?
For the fist year and a half on Tysabri I didn’t have that only headaches etc, but the low BP presented itself least September, I have had nearly every test you can think of, but all ok? Now even Roche the drug company are thinking it is the drug and my reaction to, or what they call Automic Failure?
But they just don’t know?
Last year I was still walking with my beagle 2 to 3 klms a day!

John


stumbler
1 week ago

@kea21, good luck with acquiring Ocrevus. It has good press as you can see from selecting the “Ocrevus” tag which I have added to the foot of your opening post above. This will access all previous content regarding this treatment.

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