Ocrevus

[Michelle7070]

Hi all,

I haven't posted since I had questions about the Ocrevus treatment and my fears about having it, I am pleased to say that I am still up and about.

 

I had the first dose (split into 2 sessions) in November, which I was very fearful about, I had even written goodbye letters to my family members in case I didn't get through it, probably a bit dramatic, but I was so fearful about it.  My children are in their late teens, so although I had a conversation with them before beginning the treatment, I wanted to make sure that I had said everything.

 

While the trip into London for me to have the treatment was draining, having the actual treatment was fine and I felt very confident in the team that were looking after me. 

 

I can't say that I had experience some miraculous event where my symptoms suddenly disappeared, but it is just supposed to limit the number of relapses.  I probably wont know if that has happened or whether it would have eased a little on its own but  I have experienced several new symptoms, some more irritating than others.

 

I suppose the reason I am writing this is to write what I am feeling rather than let it manifest in my head, apologies if I should have put this somewhere else.

[Stumbler]

@Michelle7070 , it's a good strategy to write your concerns/feelings down. It gets these things off your chest, as a problem shared really is a problem halved.

 

I'm glad the Ocrevus treatment went well. Your preparations, were pretty comprehensive but this provided a level of comfort to allow you to proceed.

 

You're right about the treatment primarily being an investment in your future. But, it's early days and I believe your first infusions are half dose. And we've just got over Xmas and the post Xmas credit card bill, so a potentially stressful time, especially for the female of our species. Now's the time to relax and wait for Spring to arrive. Things will hopefully get better for you. Well, improve anyway.

 

[CharlieR]

I had my first full infusion about a month ago, I noticed for the 4 weeks prior my legs getting very heavy and feeling like lead weights and swelling as the day goes on in legs and stiffness in ankles and feet.

 

I was hoping the Ocrevus would take me back to before these started but sadly didn’t. I got temporary relief from the steroids that came with the infusion but now a month later feet are sore again and legs getting heavier again.

 

I cycle a lot and find this really easy and can comfortably cycle 100km but ask me to play 9 holes of golf and I struggle at the end.

 

I game noticed that now I get an itching feeling later in the day and it’s like ants all over my skin especially my head, slight twitch in my left eye, last few days sensitivity in my right elbow on the skin but the worst one is the internal shakes. I seem to be getting these every evening now at 7pm ish, convinced that when they start that if I look at my hands I will see them but never do.

 

I was diagnosed in December 19 after 3.5 years from the date my feet first went numb. I am unsure whether the treatment is supposed to just prevent further relapses or whether it will also helps in abating symptoms?

[Stumbler]

@CharlieR . all Disease Modifying Therapies ( DMTs), which includes Ocrevus, are prescribed to reduce the frequency and severity of relapses.

 

However, once you prevent your body attacking your Central Nervous System ( CNS), your brain does have the opportunity to try and effect some repairs. This does depend on the amount of Neuronal Reserve that you have available. Neuronal Reserve is the spare brain resource which is utilised to recover from relapses and other neurological traumas. This is a finite resource and therefore reduces as you age.

 

In the meantime, all your residual symptoms will be temporarily exacerbated when you're tired, stressed or you increase your core body temperature.

So, manage your symptoms, be patient and be optimistic.