Last reply 3 years ago
Day 3 completed of Campath

Evening All,

I am now home after my third day of Campath at Addenbrooke’s Hospital, Cambridge.

Monday, Tuesday and Wednesday consisted of a one hour infusion of steroids followed by the 4 hour 1.2mg tiny bottle of Campath (worth £11,000) mixed with other fluids. Once you have had the 2 infusions you then have a waiting period of 2 hours to make sure you are feeling 100% before you go home. Up to now I have only experienced a little heart burn which is due to the steroids plus a little tiredness too, otherwise feeling surprisingly great! If anyone is due to have this treatment you really do not need to worry, the nurses are coming to you every 15-30 minutes checking blood pressure, body temperature and heartbeat and asking if you are ok!

The lady I am with has suffered with ms for 8 years having 4 attacks within the last 12 months, I met her Monday morning following her into the room while she was assisted with her walking aid as she usually felt very unsteady and did not have the confidence to complete her walk without aid. Today was a great day where she walked into the hospital from her onsite hostel unaided and did not bring her stick due to feeling more confident and also walking at a noticeable faster pace which will an amazing thing to watch and see the delight on her face. I firmly feel this treatment is going to benefit a lot of people and I have also been speaking with a lot of Doctors at Cambridge this week who were part of team who researched and created this drug and they talk a lot of good things!

I am not claiming to be some super knowledgeable chap about this treatment but would like to offer my support and share my experience if anyone is keen to learn or has any questions.

Thanks again,

Jamie 🙂

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hollylb10
3 years ago

This is the treatment I would like, but I have heard it is very hard to get. I have had 2 attacks, vertigo and now some new symptoms all with in 12 months. I am waiting for a second lot of MRI results now as the first spinal one was clear. I don’t want to try other drugs, in my opinion you should hit it hard straight away to get better results but I will have to see. I have decided I won’t take anything else, I will be angry if they make me wait….I think if they had to suffer what we do they would think differently!

Good luck with it all and keep us all updated. You sound very positive and in a great place and hopefully you will benefit massively from this! 🙂

Thanks for sharing 🙂


jamie1989
3 years ago

Hi Holly,

I had two attacks very close to one another with the first causing facing numbness due to inflammation on the back of the brain and an issue with leg strength and giving way. I sincerely hope you get this drug as the doctors are very enthusiastic up Addenbrooke’s and genuinely belief “this is the one”.

Have you tried looking at coming to Cambridge? It may not be close to you but it’s the heart of where this was created and i can ensure you that you will feel nothing but safe and looked after! Thank you for your kind words and I wish you all the best too 🙂


Anonymous
3 years ago

Really pleased for you Jamie. I hope your remaining treatment is uneventful and that it flat lines the beast for a long-time.

I’m due to start in a months time.


us-emma
3 years ago

Jamie and @emzi,

How are things going now?

Thanks for the inspiring story about your fellow patients walking into clinic unassisted on Day 3- what a turn around!

You might be going through some of the worse parts of the Pot Lem Fatigue, but hang in there- it does get better!

Let us know how you are doing periodically. We are all routing for you!

Emma

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