Forum

Ocrevus

hi everybody, new to the forum.

i was diagnosed with ms in september this year. used highest amount of steroids in august as outpatient and october as inpatient.

since discharge from hospital, things getting worse. symptoms spread to both arms and legs from only right arm, also to hips and waists, basically everywhere, recent 2 week, sometimes feel very difficult to walk and stand.

dr recommended highly effective drugs, preferably tysabri, or ocrevus.

jc virus test +1.27. therefore very worried about pml.

however, need to wait several months for ocrevus. dr recommended bridging therapy with tecfidera first.

want to know your opinions:

(1) any other hospital which can do ocrevus quickly? currently at charing cross.

(2) is tecfidera + ocrevus a good idea?

sincere thanks.

Hello and welcome Just need to clarify a few things I have had MS for 16 years and am not a specialist or have any medical qualifications You say you were in hospital as an inpatient and an out patient and they gave you steroids and then discharged you. How did they decide you had MS did you have MRI scan on your brain and spine You say a DR a doctor suggested you go on Ocrevus or Tecfidera etc, these will not get rid of your body symptoms they will only reduce the chances of further relapses Are you under a MS neurologist and a MS nurse because you need professional help now. I have been on Tecfidera for over 3 years because I struggle walking but it will not make me better just reduces chances of further relapses. Please see your medical advisor ASAP because you need good advice and help Sorry but am concerned about you please see someone soon, you need action to stabilise your body Bertie

Actually, I saw your post earlier and thought, ‘you need to ask your MS nurse/neurologist these questions’. More or less what Bertie has said. Talk through your options with your MS professionals.

Sue

Hi,

hope you’re feeling better, may I say.

Actually, I’m under CXH as well, and I assume, that unlike the district hospitals about, it certainly is the quickest and the most advanced treatment mode for numerous specialities of medicine and surgery, MS being one of them .

I would say, actually I was lucky to get Ocrevus within two weeks of being suggested it and me having accepted it straight up, as the other option available to me was only Stem Cells. Usually, Johnny, the MS nurse and others told me that it IS extremely times taking on most occasions.

I never had tacfidera myself, had been on and failed copaxone, Tysabri, and Lemtrada, before being put on Ocrevus since end September.

Hope this helps.

Regards

Ammarah

Hello Ammarah

I have posted already on this post.

May I ask you a couple of questions for myself.

I have been on Tecfidera for over 3 years and when I saw my neurologist on the 5/11/18 she said I had gone from RRMS into secondary progression.

She recommended Ocrevus which I said yes to but it has to go through a committee for approval still waiting because they only meet every 2 months

I also asked, may I have stem cells which is also being considered which I will go for, not bothered about the risks as I am desperate to improve a bit, as I feel my life is slipping away

May I ask why you chose Ocrevus rather than Stem cells

Bertie

Hello Bertie dear,

hope you are feeling alright.

I chose Ocrevus literally without having done any research on it myself. Yet, as Ocrevus had been approved recently, I went for it. Stem cells weren’t approved in 2014, and even still they’re on trial. Very rarely, they are approved for extremely unwell patients i.e. those who have very severe MS, on NHS.

But as time passes on, having gathered loads of information, and getting awareness of the fact, that if one has either failed on chemo. Lemtrada (like me) OR doesn’t want Lemtrada OR cannot be treated with Lemtrada due to factual reasons, Ocrevus SHOULD be the next step, BEFORE going onto stem cells therapy.

Later on, after accepting Ocrevus, I have checked with other MS neuros at CXH myself too. And they’re all in agreement that I made the right choice.

Hope I have explained myself well.

Best of luck!

Ammarah