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Changing medication

Received a letter from the consultant after my last MRI… my walking has ‘changed’ he says, and he thinks another appointment at his clinic is in order. I get the feeling that he thinks Rebif isn’t doing the job properly and wants to put me on something a bit stronger. I don’t know what that could be, yet… and I have an appointment on Christmas Eve to see him. (Christmas Eve, I ask you!! like he wants it out of the way before knocking off for Christmas hols.) I’m thinking he wants to change me to something stronger - options could be Cladribine/Mavenclad, Ocrelizumab or Lemtrada and wonder what anybody’s experiences might have been on these drugs? I’ve got used to Rebif, and haven’t had relapses on it as such - the odd Bad Day occasionally, but nothing I’d consider a real, full blown relapse. Fatigue has been my main symptom, and it just floors me! A bit of pain occasionally in my thigh to add to that, and balance issues (I’ve always got my stick with me but don’t need to use it a lot of the time) and strange issues with not remembering the way to places - but I consider myself lucky so far…

Funny I just posted and after coming off tecfidera due to low blood count will return to copaxone as my MS is stable and lemtrada etc would be considered too strong at my stage - good luck

Well I thought that too… even saw another consultant for a second opinion but she said my MS wasn’t bad enough yet to warrant such a potent drug as Lemtrada. I consider that I’m stable on Rebif (been on it 4 years) and don’t see the need for change. However, the inside of my brain is obviously saying something different! Oh well… we’ll find out just in time for Christmas. Nice. (there isn’t a “sarcasm” emoji that I can find… but take it as read!)

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Well, we’ve seen the consultant this morning; and he’s recommending that I go onto Ocrelizumab. Anyone got any thoughts on Ocrelizumab? Anyone already on it? Up sides, down sides? My MRI shows that Rebif isn’t as effective as it could be… I feel more or less fine, but obvs my brain doesn’t! I am still RR, it appears… not SP just yet, but it’s all labels.

Well I rather liked the look of Ocrelizumab when I saw a neurologist the other week about DMDs. But I’ve got such a history with DMDs that it’s been ruled out (basically low lymphocytes from Tecfidera could mean that low neutrophils are more likely).

But it’s certainly an effective drug, and the potential side effects didn’t scare me off apart from the white blood cells stuff!

So, if I were you, read through everything you can about the drug, possible side effects, peoples experience of it (try looking at https://shift.ms/ that site seems to have quite a lot of people who’ve started it) and discuss it with your family, friends, MS nurse…

Sue

I would give my eye teeth to try Ocrelizumab. However, having had surgery for breast cancer in January, I am ruled out. My Neuro told me she wouldn’t prescribe it to me as it could aggravate the cancer and/or lead to possible malignancies. I actually cried in that consultation, I had my hopes set on it. Foiled again.

Well, that’s the decision made; after reading up a bit and talking with my Other Half I’m going to accept the change of medication to ‘O Crikey’ as it’s now known. Friends won’t know enough to help with the decision, and to be fair to them, why should they? and family are at the other end of the country and don’t understand either. (My deeply religious Dad seems quite indignant that I’m not getting better when they pray for me every day - I politely say “Thanks Dad” while privately thinking “chocolate fireguard”… No offence meant to people with a faith…you go for it if it helps!) Mum is still sorting out things after she buried her husband, my stepdad, earlier this year, and now facing her first Christmas without him. So I am grateful to have you lot to discuss things with…the combined knowledge here beats a lot of consultants and MS Nurses who may know a lot more about the science but don’t actually have to live with the damn thing all the time. I was worried about a new set of side effects, but there aren’t many side effects that are worse than what MS can do!

I do like the new name for Ocrevus. O Crikey suits it rather well. And I’m in your corner re the chocolate fireguard. If prayers were effective, possibly none of us would have MS, or an actual cure might have been found.

Well done for taking the leap into the light. (At least I think it’s a really decent option.)

Sue