Tysabri infusion day: Amanda's video diary
ฝัง
- เผยแพร่เมื่อ 15 ก.ย. 2024
- Ever wondered what it is like to get a Tysabri infusion? Amanda, who has rapidly evolving severe MS, has filmed a video diary of her day receiving treatment.
If you have any questions about Tysabri, or any of the other disease modifying drugs, we have lots of information on our website at: mstrust.org.uk/about-ms/ms-treatments. You can also speak to a member of our MS Helpline team. Call the team on 0800 032 38 39 or email ask@mstrust.org.uk.
A quick update, I had an MRI since this video and it confirmed I had been stable for the 8 months receiving Tysabri
Do you have RRMS or progressive MS , my wife just got diagnosed with RRMS very early stage , but gets her 1st round of Tysabri today 🙏
Thank you Amanda, I just did the JCV blood test and about 9 other things that the doctor ordered, if all goes well I will be starting Tysabri.
Hi Rich, I do have RRMS.. before I started tysabri, I was diagnosed with rapidly evolving RRMS due to having quite a few relapses in a short period of time.. I’ve had 16 infusions and I haven’t (fingers crossed) had a relapse since starting treatment.
I hope it’s all gone well! ❤️ ❤️
Newly diagnosed and found your video! Thank you for posting this and showing the process. I needed a real life example of what actually happens. I haven’t started infusions yet but had my first phone call today discussing the details with my care team. SOOOOO much information was provided and after the call, I went on their website. They had a few videos, and I only could stomach two of them. They were exactly like all the generic pharmaceutical commercials that we see so much here in the States. I couldn't stomach the frolicking and exaggerated excitement to this MS infusion medication. (Honestly hate how much this is done with our medications in the states. It feels so icky).
I appreciate you walking through the actual steps and showing what happens to you on infusion day. I am quite scared and anxious to start and this helped so much.
Best wishes on your journey from your sister in MS from across the pond.
Y
Thank you for sharing your experiences. Sending you best wishes from the UK.
This was very Informative. Thank you for taking the time to make this video . I hope your treatments are going well. 💜
im having my first tysabri session next week and i didnt know what to expect , thankyou for this video , i hesitated a lot before accepting the treatment im so happy its working well for you
Hi Houda,
Thank you for watching. We're really glad that the information was helpful. We're all wishing you all the best with your treatment journey 💙
I was on Tysabri for 9 years, it was great for me, unfortulately I have to stop I got jc positive. Very scared to start something else
Thank you so much for sharing. We know how difficult it can be to change your DMT. We do have this web page, that could be helpful in making your next choice.
pulse.ly/vnu68mplba
Sending you best wishes from the MS Trust.
Was your tysabri in a black bag? Mine is cause it can't be in light?
How much does it cost per infusion ?
Hi there. Thank you for your question. This treatment is carried out in the UK by the NHS.
Many thanks
Nick
Infusion? Go for the subcut. In and out in half hour.
What’s that? Sounds interesting. I’m
Considering tysabri But I don’t know if I can actually commit to going to the hospital for treatment every month
How are you doing now?
Hi, it’s been 2 years and I’ve been relapse free since I’ve started and no lesions. I do find I’m more susceptible to infections the last 6 months but MS wise, it’s working very well for me.
“No new lesions”