Last reply 1 week ago
Autoimmune Neutropenia after Lemtrada

Hi community,

Does anyone have experience of neutropenia after Lemtrada?

Horrid to have to deal with extra things on top of the MS.

If anyone has I would love to hear if it’s reoccurred/needed treatment or went away naturally.

Thanks,
Sal

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redpimento
1 month ago

HI
I have had MS for 35 years.
This year I was diagnosed with breast cancer. I had an op, chemo and radiotherapy. There are still 2 treatments to come.
All I can say is keep positive and be kind to yourself.– because you’re worth it.


trishn
2 weeks ago

Hello,

Yes I developed ITP and severe neutropenia in December, 2019 three years after my second round of Lemtrada. My platelet count dropped to 3. I was given 4 units of blood platelets and steroids. Then in February I started taking Eltrombopag and my platelets have stayed within the normal range. Right after I developed ITP my neutrophils started dropping. Then have been staying mostly between .100 – .300 for the past 7 months. I have not had any issues with infections so far. My MS doctor wants me to have IViG treatments, but so far my insurance company has refused to pay for them. My doctor has filed a formal appeal and we are waiting on their response.


stumbler
1 week ago

@seaairsally , I’m not surprised you got this after Lemtrada. The Lemtrada wipes out your immune system allowing it to regenerate, hopefully without the MS flaws.

Hence your white blood count (WBC) will be very low as the regeneration takes place. Low WBC = Neutropenia!

Hopefully this will improve over the short term.


seaairsally
1 week ago

Hi @stumbler – ha! Yes I certainly went into the treatment knowing that fact! That my white blood cells would be eradicated. That’s the reason I had the treatment obviously.
But I didn’t anticipate two years after treatment #2 getting neutropenia sepsis and spending over a week in hospital.
Thanks for your message though.
S


stumbler
1 week ago

@seaairsally , Oh, I am sorry you’ve had a rough time lately. I didn’t realise that it’s been two years since your last treatment.

@tracyd, any comments?


tracyd
1 week ago

@seaairsally
You’re not alone my neutrophils and monocytes are both very high end constantly or off the scale. Happy to talk if you want to drop me a OM
@stumbler thanks for the tag


acceptance
1 week ago

Oh chick what a mare!

I presume they didn’t warn you of the possible risk of neutropenia when you were prescribed it; or evidently how bad it is/whether it’s long term or a temporary situation/or what you can do about it…have you been advised further in any way? Grr

I’m quite poorly myself, but I read your post and was incensed and sympathetic – bless you, all you need in these trying times.

Lemtrada and it’s ‘ game changing’ abilities were touted everywhere here a few years ago, much to my consternation(long story) – then Proff G at Barts put a more balanced , realistic (50% failure, 25% long term damage fk that) view across in 2017 -and I felt a little bit vindicated when I read his (outrageous and infuriating )but well researched/written blog about it; calling for more trials due to safety concerns; (and documenting the absolutely and entirely corrupt pharma industry)

https://multiple-sclerosis-research.org/2017/09/neutrophils-lost-after-alemtuzumab/

(…. grr – They knew they were poisioning babies; but carried on regardless for 7 years for example- also in said post of Prof G)

They should test these drugs much more thoroughly before they start patenting and prescribing

I used to be a lawyer and honestly? I’d speak to a medical negligence lawyer if I were you?

In fact I would be happy help and to zoom you through the whole process tbh (pro bono/free), so incensed am I on your behalf honeybunch.

Fresh fruit smoothies, fresh air and lots of treats for you lovely
And Tracey I love you, your bravery, your blog, your hair, your adorable dog….)

Hugs to all✨❣️🌈🦋🥶🦋🌈❣️


stumbler
1 week ago

Thanks, @tracyd 😉.


tracyd
1 week ago

@acceptance
Thank you 🙂

@seaairsally

I have to say it’s there in my blood results which I’ve published since I had Lem – my neutrophils and monocytes were always a bit ‘tits up’ even before I had Lem.

It’s why I ended up at the Haematologist last year because I was concerned that they’d spiked somewhat – hilariously I sent the haematologist my bloods spreadsheet and he had a ‘moment’ that it was ‘a thing of beauty’ and asked if I could help him do something similar for his other patients 🙂 anyway enough ‘squirrelling’ – the upstart is that it’s been like that since way before Lem for me – nothing is worse, but I have now had a full clean bill of health about cancers and leukaemia and all the genetic tests for BRACA2 etc all done and passed as well.

@stumbler Apologies it’s been far too long since I was on here, I guess life just got in the way, I’ll try to be less rubbish and visit more often in future xx

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