trace75 12/01/13
Last reply 5 years ago
Low white blood sells on DMD's

Hi All,
Does anyone have experiences with low white blood cells (wbc) when on DMD’s?
I started betaferon sept 2012 but had to stop again before xmas due to wbc dropping well below normal. A little diappointing when you are getting used to all that goes with these treatments. Neurologist asked me to have a treatment break and when wbc back to normal restart treatment.
My wbc were back to normal yesterday and i restarted betaferon last night.
Anyone else have similar happen with their treatment? And if so when restarting your DMD, did the wbc stay within the normal range?
I am hoping i don’t have to change my treatment as it is very handy to be able to throw a betaferon or 2 into my bag if i am out for the night or away for a short break without worrying about needing a fridge. Fingers crossed 🙂

Trace x

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stumbler
5 years ago

@trace75, not too sure what to think about this? They’re Disease Modifying Drugs (DMDs) and they’re designed to reduce relapses. Relapses are caused by our immune systems (the white blood cells) turning on ourselves.
So, it would seem logical that DMDs have an effect on your white blood count.
But, that’s just my thoughts and I’m not medical.
There are other DMDs to consider. Possibly, Gilenya, which is taken orally.


paul2011
5 years ago

i experienced this with rebif 44 but it returned to normal at my next blood test.


trace75
5 years ago

oops a typo again!! cells not sells

Thanks @paul2011 i hope if they drop again they will get back to normal with continuing treatment.
Also thanks @stumbler I know it is the risk with the treatments but i think the way the drugs work is more technical than reducing the wbc (but don’t ask me how!?!?)I am restricted to what is licensed for CIS unless i get a conformed diagnosis of ms. Just had another mri so maybe my treatment choices will change pending the results of it.


stumbler
5 years ago

@trace75, I’m surprised that a DMD has been considered for CIS. Although CIS could be considered as “Singular Sclerosis”, until you have another episode (which may be never), when it becomes “Multiple”.
It could be that you have a very proactive Neuro.
In fact, the NICE guidance doesn’t seem that clear :- http://guidance.nice.org.uk/TA/Wave21/13.
But, you have to go with the recommendations and advice given.


cameron
5 years ago

As far as I remember, Copaxone doesn’t affect the white blood cells. I think that’s why you don’t need regular blood tests as you do on the interferons.


cameron
5 years ago

Also, on Copaxone, you can leave it out of the fridge overnight or longer.


jasfromtas
5 years ago

Not sure why an interferon should drop WBC. Only Gilenya is MEANT to do that. Could be unrelated crap coincidence? I have not heard of it here. And it does not make sense with how the drug works (just giving the WBC something else to attack that LOOKS like myelin).
@stumbler Regarding interferons and CIS, I am not sure where you are, but here in Aust the CRAB drugs are all National Pharmacitical Benifits Scheme approved for CIS. Because the are meant to reduse the liklyhood of CIS turning into MS by up to 30%. (And delay the conversion, if it hapoens, by 2years)
But that doesn’t mean they always get prescribed though.
🙂 Jas


jasfromtas
5 years ago

Not sure why an interferon should drop WBC. Only Gilenya is MEANT to do that. Could be unrelated crap coincidence? I have not heard of it here. And it does not make sense with how the drug works (just giving the WBC something else to attack that LOOKS like myelin).
@stumbler Regarding interferons and CIS, I am not sure where you are, but here in Aust the CRAB drugs are all National Pharmacitical Benifits Scheme approved for CIS. Because the are meant to reduse the liklyhood of CIS turning into MS by up to 30%. (And delay the conversion, if it hapoens, by 2years)
But that doesn’t mean they always get prescribed though.
🙂 Jas


jasfromtas
5 years ago

Not sure why an interferon should drop WBC. Only Gilenya is MEANT to do that. Could be unrelated crap coincidence? I have not heard of it here. And it does not make sense with how the drug works: just giving the WBC something else to attack that LOOKS like myelin.
@stumbler Regarding interferons and CIS, I am not sure where you are, but here in Aust the CRAB drugs are all National Pharmacitical Benifits Scheme approved for CIS. Because the are meant to reduse the liklyhood of CIS turning into MS by up to 1/3. And delay the conversion, if it hapoens, by 2years.
But that doesn’t mean they always get prescribed though.
🙂 Jas


jasfromtas
5 years ago

Blrah!!!! Now I echo!!!! Sorry!!!


stumbler
5 years ago

Hi, @jasfromtas, both me and the initial poster are UK-based. Unfortunately, we have protocol, bureaucracy and cost that need to be considered before the Docs can prescribe some of these meds for specific conditions. 🙁


jasfromtas
5 years ago

Bloody beuracracy.


trace75
5 years ago

Thanks @cameron didn’t realise you could keep capoxone out of the fridge for up to a month. Worth a think about if the cells fall again.

I have a very pro-active neurologist. I did suggest treatment as I had read a lot of the info from websites on CIS. There was 4 criteria and if I met 3 of them I got treatment. Unsure of the criteria used but after discussion between the neuro and radiologist I was able to get started after 13 weeks on a waiting list.

It’s the same with scripts and costs. I see many bloggers here mentioning the costs of their treatments. Seems very different all over the Uk.


trace75
5 years ago

Thanks @cameron didn’t realise you could keep capoxone out of the fridge for up to a month. Worth a think about if the cells fall again.

I have a very pro-active neurologist. I did suggest treatment as I had read a lot of the info from websites on CIS. There was 4 criteria and if I met 3 of them I got treatment. Unsure of the criteria used but after discussion between the neuro and radiologist I was able to get started after 13 weeks on a waiting list.

It’s the same with scripts and costs. I see many bloggers here mentioning the costs of their treatments. Seems very different all over the Uk.


paul2011
5 years ago

they seem to be changing the fridge rules for some drugs…..rebif can now be kept out of the fridge for 14 days

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