Last reply 8 months 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
9 months 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
9 months 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
9 months 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
9 months 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
9 months 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.


kea21
8 months ago

Hi People,
Well saw my Neurologist on Wednesday, I was a real mess when he saw me, headaches, dizziness and could hardly walk? And very depressed angry!
He wanted to put me on happy pills!
Anyway he didn’t want me to go onto ocreluzumab at this stage as he said things seem very active and is concerned the down time changing may cause an episode? He is also still thinking something else is going on_more blood tests! Which have proven to be ok?
So I still say it is a combination of the drug and MS.
I again am a week out from my next Tysabri infusion and my head is clear no headaches, walking still crappy especially since the weather has heated up But!
That time a few days out I was ok, then the day after infusion the usual hangover and morning headaches dizziness from then on? My BP is back over 100/60?
I swear it is a lot to do with the drug!!!

John


littlebopeep
8 months ago

Not much to say. Only that I hope you’re ok – this all sounds really horrible to go through. I suppose your Neuro is being cautious as he won’t have much experience with ocre as it’s new. Knowing how to switch people is always difficult as they have to balance the risk of rebound ms activity and over immune suppression… This doesn’t help you though – have you got a date to see him again? Maybe you could ask him for a fixed date for the switch even if it’s a few months down the line – I always feel better if I’ve got a date that I can pin hope too


itsmewithms
8 months ago

Good luck on your treatment and halting progression. I was diagnosed 15 years ago and went through Copaxone and Rebif. I started Ocrevus in September by taking the first two half doses. My physical condition is pretty stable and I can walk with a cane on about all surfaces and without it if on a level and agreeable surface…some seem sticky and reach up and grab my foot ;-0 so it is best if I have a stick if I catch my toe. I am more mobile early in the day and my stamina isn’t great. Within an hour I am like a wind-up toy and need to give myself a break. I have about one hour a day I can do something physically exerting.

I haven’t found that Ocrevus is a wonder drug for me in that I can now run where before could only walk, etc. but didn’t really expect that type of impact. As I explained in my PT session yesterday morning I am happy to hold my ground or make modest gains. He is charged through PT standards with “making me better” and I told him that was likely an unreasonable expectation when working with a progressive disease ;-0 I just don’t want to give any ground from where I am now and push the boundary to the extent I can. Reasonable expectations required 😉

On the other hand I haven’t had a return of symptoms experienced in the past as some people have reported. They have been flooded with past symptoms briefly and than had a rebound out of them to being better than before infusion. I have found that I was initially maybe a bit more wobbly and now feel more stable. Nothing very noticeable or remarkable.

Good luck – if you are approved and feel you are in a good place to give it a try good luck! I did take my flu shot at least 2 weeks before and that type of thing as reduced immunity is a risk but I am the type that never gets the typical bugs that go around. I just get the rare nasty stuff like MS!


kea21
8 months ago

Update on what is happening with me!
Saw Neurologist, could hardly walk into his clinic! Anyway he again doesn’t know? Said that he wanted me to stay on Tysabri for now as he is worried about the standdown/cross over period and opening me up to further episodes?
He still thinks something else is going on? More blood work done, most ok?
One report came back talking about Mild Hypogamaglobulinanemia???
I have googled, but apart from immune/blood I have no idea?
Still dizzy, headaches and low blood pressure?
Getting pretty sick of it all! Neurologist also wanted to put me on happy pills! I told him what he could do with those!

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