Hi all I was dx in 2012. My main symptoms are a permanent MS hug in the left side of my chest, a weak left leg and foot drop in my left foot. I have lesions in the balance cortex of my brain and on my spine (hence the hug). I have been on Tecfedira for three years with regular but manageable side effects. My last two MRI’s have been stable. On my last Neuro appointment we discussed my gradually deteriorating mobility. I thought it was because of muscle wastage but my Neuro believes it is the MS despite no change on the MRI. He has offered me a the opportunity to change my DMD from Tecfedira to Ocrevus. I’m not sure what to do and would like opinions from people especially if they are on Ocrevus already. Thanks in advance Love Adam
Adam,
My understanding is that Ocrelizumab has been given approval by the EU for a marketing licence. However, NICE will report later this year as to whether it will be available through our NHS prescription scheme. Whether it is currently available in the UK through a private prescription using the Specialist Pharmacy Service (SPS), I do not know.
On the SPS website, a 300mg vial of Ocrevus is priced at £4,790.00. During the trials patients were given 600mgs every six months. This would make it very expensive to fund privately.
For user experience of the drug I would recommend looking at the US based website called MS News as it has been in use there for a little while. The website has a section on the drug.
I cannot help you any further but I await the NICE ruling with interest.
Best wishes
Alun
Hi Alun thanks. I’ve been told by my Neuro that he expects it will be available from July on the NHS. Thanks for the weblink. I’ve also joined a Facebook group that has numerous end users on it. Kind Regards Adam
Hi Adam
Read you message, I like you on Tecfedira and also have problems with left leg and foot drop and my walking is getting worse.
Have been offered OCREVUS in last few days but need to get final approval. I will accept because I am desperate and will try anything to improve.
Did you accept and go on it.
Bertie
1 Like
Hello. I have recently been diagnosed with MS. I have just been offered a choice of Ocrelizumab and Tecfidera. I honestly do not know what i am going to choose. This is my first treatment and i am feeling a little overwhelmed.
Hi I was diagnosed with MS 15 years ago and these drugs where not around then, so I became disabled about 5 years ago.
Been on Tecfidera since October 2015, no problems with it take capsule twice a day and the company delivers them to my home every month. You have blood tests every couple of months.
The problem is I have gone into secondary progression over last 6 months, so have been offered Ocrevus to see if that slows my MS down.
The choice is yours, but I am definitely going for it, they told me about some side effects but not concerned…
My real choice was stem cells but offered Ocrevus and stem cells on back burner but that I think is a long shot as only small number accepted and plenty of negatives but not bothered.
I have done 2 posts on this yesterday for views so hope some comments come back, keep watching
Good luck
Bertie
1 Like
Hi Bertie
I’ve just seen this. How are you getting on? I’m seeing my neurologist in early December to discuss changing from Tecfedira to Ocrevus and still not fully decided. Do you know what monitoring they do. On Tecfedira you have blood tests every three months to monitor your white blood cells.
I hope it helps you. Good luck
Adam
Hi Adam Thanks for your contact. Not on it yet, need to undergo TB and viral screening, do not know what they are. They do regular blood tests and MRI monitoring Bertie
Hi Adam,
hope you’re feeling well.
I suffer from severe RRMS. Had been on tysabri, then Lemtrada ( chemotherapy), but both failed in 2-3 years. Had my last set of relapses which brought many new symptoms all together this last August. The neuro. team offered me either Stem Cells or Ocrevus, I went for the later, as it’s recent been approved by NHS.
It’s 6 monthly infusions, each lasting sitting for 6 hours.
Bit of itching after first infusion in September. Bit flu, and lot of fatigue with it immediately, which then got settled much with Amantadine.
Neuros. tell to expect improvements after six months. I’ve noticed clearing of brain fog much and improvements in walking a bit.
Hope that helps.
xxxx
Thanks Bertie and Aqm let’s keep in touch as we try it out Good luck Adam x
1 Like
Thanks aqm
Improvement in walking, fantastic news for you, hope it does the same for me.
That is the good news I wanted to hear, cannot wait, do not care about side effects.
You say you were offered Stem cells, I have also requested them, it has not been totally rejected but I think it is a long shot.
They do it in Mexico I have a quote for $55,000 but mortality is a bit higher than here, approximately 5% and no information on success.
Thanks for the feedback.
Bertie
1 Like
Hi Bertie,
hope Ocrevus suits you, with minimal side effects.
xxxx