Relapsing MS Stories: Speaking Up About Treatment (lemtrada.com)

Multiple Sclerosis Monthly Blood Tests as required by Alemtuzumab Lemrada.com

As my followers know I suffer from multiple sclerosis and have had the ‘alemtuzumab’ treatment which clearly stipulates on the Lemtrada website that patients should have monthly blood tests done to help detect side effects early.

Upon having a recent consultation at Rockwood Hospital Cardiff, part of the UHW Neurology Department, the consultant asked me when did I have my blood test done. Surely he should have had that in front of him and not relied on a patient to update him. This is poor management and medical care.

So after it was established I have not had my blood test done for a good few months, he said he would arrange for them to be done every month because during Covid Lockdown it was every 3 months and we are no longer in lockdown, so there should be no excuse. (This is against the terms of Lemtrada policy).

Lemtrada website says: BEGIN YOUR MONTHLY MONITORING

Certain side effects of LEMTRADA can happen months and even years after treatment. That’s why it is important to begin monitoring after your first infusion and continue regular monitoring until 4 years after your last infusion. Monitoring can help your healthcare team find potential side effects early.

What to Expect After LEMTRADA® (alemtuzumab) Infusion Treatment

So we are nearly in the month of December and after my consultation in October, I am still waiting for a letter to see when I should have my blood test done.

I should not be the one to be chasing them. It is their job to make sure patients have regular blood tests!

This in my eyes is NHS medical negligence.

Clearly the consultant I went to see did know what he was doing because the letter he wrote to my doctor contradicted his statement as I am on the highest dosage of painkillers Gabapentin. I wrote to my neurologist and asked for the error to be rectified, which has now been updated.

https://www.lemtrada.com/what-to-expect/after-treatment

https://products.sanofi.us/lemtrada/lemtrada.html#medguide

I should not be going out of my way to remind them to do their jobs, it is their responsibility to make sure I have my monthly blood tests done”.

Update 09/12/22

It has been five months since my last treatment and I have only had one blood test done. I am going to see if the meds that the consultant prescribed are ready for collection and if not I will be writing a stern email to the Professor of Neurology.

#multiplesclerosis #ms #alemtuzumab #sanofi #lemtrada #medicalnegligence #neurology #neurologist #nhs #uhw #rockwoodhospital

Lucky Black Cat
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Zena is about to graduate in BA Hons Marketing Management at Cardiff Metropolitan University and plans on doing her Masters later this year.

Zena may look normal to an untrained eye even though she has an invisible disability. Thanks to a great support network she is able to fit into society and can get additional help, whenever she needs it.

Zena aspires to be a role model for young people with Multiple Sclerosis.

Zena is also 'The Assistant Editor' of Disability UK Disabled Entrepreneur Journal, and Cymru Marketing Journal (CMJUK). She works remotely which does not put a strain on her health. She writes, does social media management, content creation and digital marketing.

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