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Restless Legs Syndrome

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Neutropenia /pregabalin

Baz33 profile image
24 Replies

Hello...I've just had my 3rd iron panel results , showing ,neutropenia..this is new and wasn't present in my last results in march.It's a side effect of pregabalin from what I can find (the pharmacist was useless).

Ferritin down to 79 from 179 in November after iron infusion.

Legs are chaotic .

I'm.at neurology on 16th and have made a list of all suggestions,thankyou.

Has anybody any experience with neutropenia please ?

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Baz33 profile image
Baz33
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24 Replies
SueJohnson profile image
SueJohnson

It can be a side effect of pregabalin but that is very rare - like 1 to 10 of every 1000 patients taking pregabalin. If your doctor decides to take you off pregabalin remember to do so slowly like 25 mg every 2 weeks as I advised before.

Then after you are off pregabalin for awhile have the test again to see if that really was the cause.

Baz33 profile image
Baz33 in reply to SueJohnson

Currently on 275mg but need to take 2 x max strength ibrufen with it otherwise I'm raging ....thankyou

ChrisColumbus profile image
ChrisColumbus

According to the BNF neutropenia is an 'uncommon' but not 'rare or very rare' side effect of pregabalin. But there are other possible causes.

And according to the Mayo Clinic "A single blood test showing low levels of neutrophils doesn't necessarily mean you have neutropenia. These levels can vary from day to day, so if a blood test shows you have neutropenia, it needs to be repeated for confirmation."

mayoclinic.org/symptoms/neu...

How low was the neutrophil count? As this was apparently a new finding could you get a second blood test to confirm before your Neurology appointment?

ChrisColumbus profile image
ChrisColumbus in reply to ChrisColumbus

I'm uncertain exactly how long you've been on pregabalin - is it 5 or 6 months? If so and you had the same (??) blood test in March and low neutrophils didn't show up then, and if the reading is confirmed in another blood test, perhaps pregabalin is the culprit or perhaps, as Sue wonders, it isn't...

mayoclinic.org/symptoms/neu...

Baz33 profile image
Baz33 in reply to ChrisColumbus

Hi, 6 months now, It was only offered for 3 months but they left me on it.Conflicting gp knowledge, 1 gp swore by it...but only for 3 mo the,the next gp swore it was the most dangerous drug on the planet and said he was switching me to amitryptoline ...thankfully I know this is an antidepressant and absolutely not a consideration.

DesertOasis profile image
DesertOasis in reply to Baz33

See if they checked your B12 levels. Maybe ask doc about Tramadol. It allegedly is also good for mood. Boofoo71 takes either 100 or 200mg of Tramadol plus iron and that relieves her RLS - she’s about 4 months out from long DA use. Plus she’s still on sertraline despite most of us telling her to stop.

Baz33 profile image
Baz33 in reply to DesertOasis

My mood has stabilised thanks to hrt ....thank god, just the legs !!!!!!!

Baz33 profile image
Baz33 in reply to ChrisColumbus

They've booked it for 4 weeks time, no levels attached to my report but levels for everything else ...I will take everything with me to neurology next week as its taken a year to get this appointment I need all findings with me .

SueJohnson profile image
SueJohnson

Were you tested for neutropenia in your March test? If you were and it didn't show up I am thinking it might be caused by something else as from what little research I have done it should have shown up by then. Lots of things can cause it.

Baz33 profile image
Baz33 in reply to SueJohnson

It was just an iron panel in March, the same as May, it didn't show up in March but has now , I've looked at causes and it appears many causes so I'm.clueless .

DesertOasis profile image
DesertOasis

Baz, are you still taking the oral iron at night? You swore by it (and low dose Gabapentin) for months.

And yes, neutropenia can be caused by certain drugs as well as deficiencies in b12, folate, copper. Your lack of iron storage may be due more to a b12 deficiency? However, I’m going to assume your doctors didn’t commit malpractice by not checking your b12 levels prior to the infusion.

An infusion will not and can not take the place of nightly ferrous bisglycinate, if that gave you relief. AND, after an infusion, it may take days, but more likely weeks and even months, before the iron at night trick will work again.

Baz33 profile image
Baz33 in reply to DesertOasis

Hi,so ,they took me off all iron supplements after my infusion ,ferritin went up to 179 now fallen to 79 but the (I can't remember) 1 result was too high so I had to stop all oral iron.The gabapentin gave me really black depression,I was flat lining on this .

There's a pattern of things working for a few months then the symptoms return.

Bloods were tested prior to infusion but I'm not sure for what ???

This is really interesting. I have developed mild neutropenia (present in last 2 or 3 blood tests) whereas I didn't have it previously. I have been on pregabalin for close to a decade. More reason to come off it! These side effects are always grossly under-reported.

Baz33 profile image
Baz33 in reply to

Currently reducing by 25mg every 2 weeks , my only side effect from the neutropenia is tiredness in the afternoon, sleeping for upto 4 hours mid afternoon....thankyou for your feedback.

in reply to Baz33

I have that afternoon tiredness from pregabalin, even before any neutropenia appeared. Paradoxically, some pregabalin withdrawal symptoms are the same as pregabalin side effects. All the best with coming off it.

Baz33 profile image
Baz33 in reply to

A decade ???? This will.be really difficult to reduce, has it helped ?

amrob123 profile image
amrob123 in reply to Baz33

I'm reducing slowly, currently at 200mg from an all time high of 300mg. I definitely feel more alert/alive on lower doses, although not getting great sleep atm.

Whippetmama profile image
Whippetmama

Did you have a CBC with your iron panel? Just curious because in the US, a CBC is not normally included in an iron panel.

Baz33 profile image
Baz33 in reply to Whippetmama

What's cbc please

Whippetmama profile image
Whippetmama in reply to Baz33

Complete Blood Count -- includes red cell count, white cell count, hemoglobin, differential (types of white cells in percentage and examination of red blood cells).

Baz33 profile image
Baz33 in reply to Whippetmama

Yes .

berta456 profile image
berta456

Baz, neutropenia refers to low levels of a type of white blood cell called neutrophils. These are an important part of the immune system. They can be somewhat low and still be ok, unless they drop really low—below 1500. But if they are low but not that low yet, the doctor should be keeping an eye on it. Neutropenia would not make you tired. These cells are not involved with iron—that is the red blood cells, not the white. They are all checked in a CBC, though—it’s a package deal.

Baz33 profile image
Baz33 in reply to berta456

Brilliant thankyou, my ferritin has dropped from 179 to 79 so I'm hoping they look at that and allow me to go back on the iron I took at night ??

berta456 profile image
berta456

I hope so, Baz! As we all know, it’s so important to keep that iron up!

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