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OCREVUS I am interested in your opinion

Hi everybody,

I am Monika. I am from Hungary though I used to live in the UK. I have been living with relapsing MS for 11 years. I had problems always with my walking but in the last 2 years it was very bad. I lived in the UK with my partner for 4.5 years. He worked in hospitality. In the last 1.5 years I couldn’t get out of the room as I couldn’t manage the stairs, so I was on my own many times and locked in the room nearly every day. We have no car, so I couldn’t get anywhere only if our friends visited us and I felt strong enough to get down the stairs. We decided to move back top Hungary in April. I have more people around here and hopefully I can improve here.

I am trying to eat according to the Wahls Protocol, but I find it very hard as the selection of food is lot smaller in Hungary as was in the UK and prices are also very bad.

I have heard about Ocrevus a couple of months ago and checked it online. I found that there will be a trial in Hungary. So I was able to apply. I had to go to an examination and the doctor said that I have just enough points to get in the trial but they will choose only 20 persons and they will let me know if I am in the group of 20 in September. I didn’t get any reply until Monday so I thought that they didn’t pick me. But Monday they called me and said that I am in the chosen 20. there will be two more big examinations in the next two weeks before they want to start the trial.

I am writing here as I think that I can get more information here as I could get in Hungary as Hungary is a very small country, its population is even less than London’s population.

I have read about Ocrevus, but I don’t know anybody who is treated with it.

What are your experiences? I am interested in everything.

I am also interested in your opinion about the Wahls protocol.

Thank you for your replies in advance.

M

hi M i don’t know anyone who is on ocrevus because it’s quite new. however if you are happy to try it, then do so. the wahls protocol is quite respected but i prefer to eat a normal diet just amended to be whole foods based (wholemeal bread, pasta, brown rice etc). really it is no more expensive than what the rest of my family eat. wishing you well.

Hi there is a support group on facebook if you have access.

I have heard good and bad things about it but like anything you always do.

As to Wahls diet. No comment i think a good healthy diet is all you need, lots of fruit and veg, chicken and fish, no saturated fats, or processed foods. Just healthy and i am sure you already eat like that anyway. No diet is going to be a cure, it can help us yes only because it eliminates things which are not good for us.

I would join the group on facebook it has a lot of members. Ocrevus is very new here.

good luck hunny. xx

Thank you for your kind replies! I really appreciate them. I will join the facebook group. xx

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Szia Moni

i would not do this trial personal due to the very high risk of cancer as side effect. If you been so long in uk the neurologist here can offer you other MDT drugs that are not so risky and better known as much more friendly as side effects.

Be wise when yu take the decision as the bit of improvement(if any) may not worth in balance the medium/long term damage

I think that you will have a greater support in uk than hungary if you approach the relevant institution like your MS nurse, local council, local comunity centre etc and that will take away from the “loneliness”

With the diet just be careful not to miss out on vitamins tha your body needs

Puszi

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Thank you Alinateodora! Köszönöm!

Hello Monika. I don’t know anything about Ocrevus but did try the Wahls Protocol for a short time. It wasn’t going to fully help me as I’m a veggie and won’t commit to eating meat as required for the WP, and I did find it a faff. I agree with Crazy Chick with regard to diet, we’ve so many other limitations at least lets enjoy food. Best wishes for trial should you do it.

I was diagnosed with highly active RRMS in August 2017. I was offered a handful of treatments by my doctor, including Lemtrada and Tysabri, however I opted to join a clinical trial for Ocrevus. I started Ocrevus in October 2017, since then I have had no relapses (before this I had had 3 relapses in 8 months) and no progression of lesions. The infusions are 6 monthly, I’ve not had any infusion reactions and I am fit to go back to work the next day. Overall a really positive drug for me.

Hi Monica and Lisa I have been offered Ocrevus in last few days and waiting final approval. Been on TECFEDIRA for 3 years but I am steadily getting worse walking, can do 25 metres with stick and 50m with stroller then have to sit on it. I will accept, do not care about any risks. Sounds fantastic Lisa any more improvement please let me know. Monica did you go on the trial and has it been a success. I have private neuro physio from another Monica from Hungary, it is a very common name she tells me and a population of just 8.5 million most common name is now Maria. Really excited will show my Monica the message. Bertie