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Pharmac funding treatment for PPMS in New Zealand
I just heard this on the news last night. I couldn’t believe my ears. I have made an appointment with my GP, end of September to talk more about this new treatment called Ocrelizumab. I hope I qualify.🤸♀️
Jilly PPMS
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10 Replies
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Hi Jilly – That’s great news! I know of a lot of people who have done very well on Ocrevus (the brand name in the States). I hope that it’s the right DMT for you. Ed
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I’ve had this treatment. The protocol is they give you first 2 half doses. Then you received a full dose. Each one is an infusion which takes four or five hours. I tolerated it well. The only side effect was a scalp itchiness which they gave me something to relieve . It worked immediately to relieve the itching. I really had no other side effects. In total I had five or six infusion treatments. I stopped it really because my next treatment was scheduled during the start of the pandemic.
One other thing that I cannot say one way or another was after my third treatment (approximately) I came down with the shingles. I can answer any specific questions you may have I will be happy to. Good luck. By the way, my neurologist immediately described the O
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Hi Mike, sorry to hear you got shingles, that awful to get I hear. My mother got shingles after breast cancer back in the 1980’s, it just gets better and better doesn’t it.
Jilly PPMS CC
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My GP says I don’t qualify.
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I have been diagnosed with cervical cancer, it’s a 5mm mass. This week I have an MRI and a PET scan and a meeting.
It’s my fault, a few years after the earthquakes I ran out of gas and stopped caring for myself. I could see no future, got PPMS now cancer. Thanks Mum.
There is one thing I am very happy about is my non existent children that I never had, will be spared from any illness. It all stops with me. Yay! Mission accomplished.
Jilly PPMS
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It’s not your fault Jilly.
How are you dealing with this new news? What is your plan going forward?
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Hi Benjamin. I was surprised mostly, didn’t see that coming. My roommate was diagnosed with blood cancer 4 months ago as well. We are a right pair. I am in two minds whether to accept treatment or not. I have been waiting for something that will kill me. I am not fussed on this planet anymore, rather tired of all the awful things going on.
Jilly PPMSC
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You are definitely a “right” pair alright. 🙂
I get wanting an illness that isn’t as unpredictable and randomly random as MS.
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Hi Benjamin. Sorry for the delay. I have been in and out of hospital with all sorts of scans. I have stage 2 cancer which is fixable. But it comes with risks. My PPMS may get worse. I am really scared about that. I don’t want my MS to get worse, it’s hard enough now. I suppose it’s my destiny, like all the other bullshit in my past. I really am in the ‘now moment’ facing the deep end very soon. I try my best not to dwell on it and for the most part I do ok. My first treatment is 22 January, then it’s everyday (Mon-Fri) for 6 weeks. that’s all I know right now.
Tip for older women. If you start bleeding from your vagina you have cancer ok and get to your doctor fast.
Jilly PPMS CC
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I meant to say older women may have cervical cancer. Go to doctor fast.
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