I have gone for ocrevus treatment because it doesn’t take to long to receive. Is this a good treatment for RRMS?
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Hi there,
Ocrevus is a great treatment. MS drugs are classified into three levels of effectiveness and Ocrevus is in the most effective class (ie best of the three).
I hope you get on well with it.
Best wishes
Alison
Hi ,
I recently changed over to ocrevus from kesimpta due to flare ups of psoriasis after each injection. I’ve had both half doses and got on okay. We are all different in how these medications affect us, but I would say is drink plenty of water and take items like a book ipad to keep you occupied whilst having the infusion. A positive for me was my fatigue has improved a little. I hope you get on okay with your first infusion.
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I’m so annoyed I spoke to MS Nurse on Friday, she told me I was good to go for 1st treatment. All I needed to do was have blood test which i booked through my care app. When I went to hospital today for tests they had no idea what test was wanted. After 30 minutes wait and after they tried to contact specialist from the MS team they told me to go home. Im so upset and annoyed by this i feel I don’t care about treatment because I’ve been messed about too much.
Oh that sounds frustrating!
I had my blood tests done at the hospital straight after I had seen the neurologist and decided which treatment to start - the neurologist printed the forms off for me and I went to a different part the hospital to have the blood taken and sent off for testing.
They test for a LOT! The lady took about 4 or 5 vials.
It’s a shame that the process hasn’t run as smoothly for you. I wonder if it’s worth contacting your MS nurse or consultant’s secretary to get the tests organised. I hope you get your treatment soon.
Oh so sorry to hear this. My own experience hasn’t been easy and can be quite frustrating at times. It was agreed I would start treatment (DMT) I was sent away with the blood form etc, but had to wait for the nurse to come to mine. Well I felt like a pin cushion time he’d done and he was unsuccessful. So I had to go back to the hospital to get them done.
Before starting ocrevus there’s less bloods to be taken. But it was a quick process once they had the results to starting treatment.
you hear very soon.
Oh, don’t give up @louie712002 . Think of the good that the DMD treatment will give you. Maybe years of no new lesions and no new symptoms and no worsening of your ms. Yes, the delay isn’t great and no doubt it is frustrating. Just try and get your blood test done at the earliest opportunity you can, so you can get started on Ocrevus as soon as possible. Wishing you all the best that it is as effective for you, as you would like it to be.
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Thanks for all your support my name is Louise. Im feeling so upset at the moment, I feel I have nowhere to turn for answers. I have no support or information from MS team or gp. No leaflets or talk about what is going on.
Hi Louise,
You might find it helpful to give the MS Society helpline a ring - the chap I spoke to when I phoned was lovely.
There is support out there, keep trying x
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Oh and the MS Trust have loads of really good information leaflets about different aspects of MS. You can order them from the MS Trust website in either hard copy or digital download.
Thanks for your support. I’m feeling very upset about what happened today. I feel that I have done all the specialist have asked but I’m not going anywhere. I just want to say f,k the treatment.
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Don’t give it, I know it can be so frustrating at times and feel like everything is moving in slow motion. There’s helplines on the MS society sites, but because of your diagnosis you should be assigned an ms nurse and they should be able to assist you, and I was given loads of literature on my first appointment. I don’t know if it’s the same in the rest of the uk.
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I totally understand your frustration and remember getting quite ratty with the MS team when I was first diagnosed but couldn’t get much information about what happens next and when. I soon realised however, that there was no point in getting frustrated and ratty. Unfortunately there is a UK wide shortage of MS Neurologists and MS Nurses and particularly the nurses tend to have very large case numbers.
Things do happen , it might be a bit slow at times and messages get lost or wires crossed but things do progress.
It’s a good idea to build a good relationship with your MS Nurse. He/she will be your first point of contact and will become familiar with your individual experience of MS. I’ve had the same nurse for years and she knows me quite well.
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I’ve not started treatment until 22nd January. My partner has a bad cold. Is it safe to share a bed? I’ve had all immunisations.
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Sorry to hear that, and hope she feels better very soon. If you’re having ocrevus infusion they check with you regarding your health before the infusion and dip test your urine.
That decision falls with you, and I’m guessing it’ll depend how poorly she is. Sorry I can’t help you anymore.
I got my blood test done after alot of stress. I will have my first treatment on 22nd January. Thanks
I’ve got a date for my first treatment 22nd January and I can’t wait. Thanks everyone for your support. Just 1 question I’m going away a week before my treatment,do you think it’s a good idea to wear face mask on the plane?
If it was me about to start some kind of treatment I would be doing whatever it needed to be. So, yes, I would wear a facemask in an enclosed area. If only for my own peace of mind.
Before I start my treatment I’m going away for a holiday. Do you think it’s a good idea to wear a face mask on the plane?
As a general rule I do everything to avoid picking up infections of any sort . I haven’t been on a plane for years but I would probably wear a mask or at the very least, us antiseptic, alcohol gel on my hands e.g after using the toilet, or on escalators in the airport etc.
I’m not on Ocrevus but from what I understand once you are on it it’s certainly a good idea to avoid catching infections of any sort ( Ocrevus makes you a little more susceptible to colds etc).