Last reply 2 months ago
Lemtrada white blood cells

Hi everyone, I’m new here.
I was diagnosed in March 2018 and underwent lemtrada in April 2018 after 3 relapses since January 2018. I was actively relapsing when I underwent the treatment, apparently this was better as it attacked me at my worst. Anywho, my most recent blood test showed that my white blood count is now 0.5. As I understand, your WBC should be between 3,500-10,000. I was just wondering whether anyone knows how long it takes for them to get to a suitable level? Do they carry on going up 0.1 per month or is there a surge at some point? I have my second round of Lemtrada in April 2019 and am very scared of them depleting what little wbc I have already.
Hope everyone is well. X

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stumbler
2 months ago

Hi @milliepipkins and welcome.

@tracyd , do you have any words of wisdom on this subject? Thanks


tracyd
2 months ago

@milliepipkins

White blood cells range is (according to the tolerances on mine) between 4.0 and 11.0

Now that’s based on whatever many parts per parsec or whatever they’re measuring them in.

Your WBC count can go up as well as down at many points in the year, if your body has been fighting an infection they can become very depleted. If they’ve been low for a significant time, it’s worth asking your doctor to do investigations into a potential cause for this – don’t push your doctor down a Lemtrada rabbit hole so that they don’t ignore potential other causes for it.

At this stage post treatment though 0.5 is actually a pretty normal reading for a lymphocyte count – is it possible that you are confusing the different readings?

If it’s your lymphocytes then that’s a great reading – the longer they take to recover, the longer they’re potentially not damaging you in an MS way – they’re unlikely to even make it back to the low end of normal before round 2 when they’ll get killed off again. If you need to see my results for the last 3+ years as a comparison please drop me a PM with an email address and I will send you the spreadsheet I use to track all my results – I have no problem sharing them, they’re published online for the world to see in my blog and on the Facebook groups.

You have a friend request, happy to share contact details if you need to talk. xx


janer
2 months ago

I have just completed round 1 lemtrada, and was very interested in this post, for me so far so good, although I have not started the blood tests yet, which I will be having done at Charring X, it is something I have been thinking/worrying about not really understanding how to read the results etc or even knowing how you get copies of the results!

@tracyd, I see you have offered @milliepipkins a copy of your spreadsheet, I would be interested to receive this also but as a newbie do not understand how to contact you, I would be very grateful if you would contact me.


tracyd
2 months ago

@janer

Absolutly you can, you have a friend request, once accepted you can PM me 🙂 xx


milliepipkins
2 months ago

Hey, thank you so much @tracyd I am so so grateful. I definitely think I have got WBC and lymphocytes confused. I feel like I’m in the dark with all biology and science related things. My doctor doesn’t send me my blood test results because they say “if anything is wrong we will contact you.” So I ring up every month because of course I want to keep tabs on my health, as it is mine, after all. I guess I’m just sick of having no immunity as I am catching infections! Had laryngitis so was prescribed penicillin and of course that gave me thrush which has now become a reccurence and will not leave. Aaaargh, it feels like it never ends xx


jodieb
2 months ago

This was really interesting for me to read as I’m due start my first course of Lemtrada in the not too distant future. I’m quite terrified… But each post I read gives me a little more courage (and tips of what to do- I’m definitely going to create a spreadsheet to track my results!)
Thank you!
I hope you’re all doing well 😃 and that your results are nothing to be concerned about x


Anonymous
2 months ago

Hi , I’m interested in lymphocyte recovery after lemtrada too, had my second round in June last year.
My levels got to 0.7 after the first round and now I’m fairly constant at 0.6 more than 12 months after round two. The MS nurse has 40 lemtrada patients and of those there are 5 of us who can’t raise our lymphocyte levels. Apparently we all share the same crushing fatigue too, which has increased since treatment.
Sorry to be down about this but I feel whilst my MS is under control the treatment has definitely affected my general health. I have also developed hyperthyroidism (treated well) and arthritis.
Again, sorry to be gloomy but I don’t hear many stories about this sidde of lemtrada. Any one else out there with the same?

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