Last reply 10 months ago
Lost

So im not on any dmd im in Canada..i tried Rebif it sucks. I have acquired pendular nystagmus from a relapse it ruined everything all my plans and im trying to stay positive but its an earthquake for me 24/7. My neurologist is a b$$:c i wont get into that but she wants me on Cladribin oral form not IV. My appointment is in a week to discuss it but I want to know if anyone tried cladribin and was it any good? Thanks

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stumbler
10 months ago

Hi @hajer1 , I’ve no firsthand experience, but there are some earlier posts. You can find them here :-

https://shift.ms/?s=cladribine


edgarleroy
10 months ago

I’ve taken a full course of the injections. It is very easy to tolerate. Blood monitoring is minimal. The clinical data says that it is as safe as any other MS drug and more effective than most all others. Only a few doses are needed, so you don’t constantly need the drug in your body. It resets the immune system (induction). And it gets into the brain to reduce inflammation there as well. It has a lot going for it.


kzak76
10 months ago

I’m so sorry you are going through this. I’m not familiar with the drug or Canadian doc protocol… can you get a second opinion or MS consultation with a different neurologist without getting the current dr. involved? I know how some dr. egos can get in the way of good care.

I stuck with a Neuro practice for 3 years of bad medical advice- like being diagnosed with Celiacs disease and told my new MS symptoms were a result of still eating gluten. I went to a Celiac specialist who said I absolutely don’t have gluten intolerance but my MS provider was indignant to be proven wrong.

I was able to get an outside opinion about my MS care by traveling a few hours away for a case review at a dedicated MS center. This service is offered to MS patients who don’t live within the MS center’s regular treatment area. After hearing their unbiased thoughts about the medication my doctor prescribed me (bad fit!) it gave me the courage and information I needed to switch and find another doctor.

I know I should have left sooner…but it’s hard, especially when you are seeing someone who has a way of making you feel dumb/wrong for questioning them.
I hope you can find someone you trust and are comfortable working with because, unfortunately, this disease isn’t going away anytime soon. Good luck!


edmontonalberta
10 months ago

@hajer1

I live in Canada; your profile shows you live in New York. This drug is approved in Canada for RRMS…

You should ask your doctor why this is the recommended drug in Canada since you could get it close to home…


hajer1
10 months ago

@edmontonalberta yes I live in Canada but was in NY for awhile, have u tried cladribin?


edmontonalberta
10 months ago

@hajer1

I have PPMS – there are no drugs approved in Canada for PPMS.


sonia1984
10 months ago

@edmontonalberta have you heard of Ocrevus? My neurologist was pitching it as an alternative treatment for my RRMS down the road, apparently it’s approved for PPMS as well.


edmontonalberta
10 months ago

@sonia1984

Sonia; my Neurologist had suggested Ocrelizumab when we met a year ago; but it had not yet been approved in Canada. He told me it had a 50% success rate (whatever that means).

My upcoming appointment is in early March – so I wait…


nutshell88
10 months ago

I was off treatments 5 yrs because i didnt know i have MS and i was doing great i found out i have i demanded rebef got a relapse im still suffering its egfevts stopped it right away. Now 5 years after i stopped rebef my brain is in a mess condition but i never gwt any relapse.
Im lost just like u. But cant trust drugs industry i know they r trying to help but unfortunately couldnt do it right.
Relapses stopped after i stopped rebef tried all types :/ but mri results r scary i wonder how would i have atrophy and not get a relapse.
Pure puzzle like.

Hope u find a better solution.

Regards


nutshell88
10 months ago

When i had attophy i suffered something similar to pendular nystagmus with rebef my neuro did few excersises to fix it himself. Their were effective i was even thinking of moving my eyes fast as an impossible thing at that time.


hajer1
10 months ago

@nutshell88 so did it ever go away?!


hajer1
10 months ago

@nutshell88 I wish I never started this and yeah I was only on it for six months And it takes that amount of time for a drug to work
But I was better off without any dmds


nutshell88
10 months ago

It faded away gladfully. But balance problems got better but i still suffer it on stairs and such its my fault for not doing enough physio.
Again! Im not pushing anybody away from dmt just telling my experience.

Be safe 😉


hajer1
10 months ago

That gave me a little hope thanks

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