PV and high WBC

[MJoye]

Hi, does anyone have PV with a high WBC that’s controlled only by venesections rather than medication? Not sure what the risks are associated with raised WBC....

[MCW22]

I've had high whites from diagnosis 2 yrs ago, but only had 4 venesections before being put on hydroxy. They remained around 30 and this summer I was changed over to Ruxolitinib. The whites are now fluctuating between 18 and mid 20s. I too will be interested in replies from others with high whites as to what they are told and how they are treated

Carol

[MJoye in reply to MCW22]

Hi, can I ask why they changed the drug from hydroxy to Ruxolitinib, was 30 still considered too high?

[MCW22 in reply to MJoye]

It was never really explained why the change. The consultant said I don't have myelofibrosis but I wonder if he suspects progression. I certainly have my suspicions. Certain things in my bone marrow biopsy report, the persistent high whites, teardrop cells, nucleated blood cells, enlarged spleen and the fact that one day I'm on hydroxy and the next rux. Seemed in a hurry to change me over. He would have changed me over that very same day but I'd already taken the hydroxy for that day. He's the sort of consultant that only tells you the bare minimum and although he says any questions? I can tell he doesn't like it when you ask any. Spleen has reduced since being on rux and along with it the pain I had on that side.

Carol

[MJoye in reply to MCW22]

Hi Carol, you must be frustrated that your Dr doesn’t encourage questions. I’ve found the opposite, that he’ll answer if I specifically ask. I only found out I had PV JAK 2 + in August and my RBC has responded to venesections. It’s my WBC and enlarged spleen that are being questioned. I don’t have any pain with my spleen but feel full all the time. Generally I feel fit and well. I’ll have to wait what my BMB result is in Jan. it’s good to talk with someone in the same position. I’m still at the worrying all the time stage! Wishing you a Merry Christmas Michelle

[MCW22 in reply to MJoye]

If they are only offering local anaesthetic for the BMB I would suggest you take some painkillers immediately before going in for it.

Carol

[Chaz1]

My husbands ET/PV & has high WBC. Not dramatically high but over the usual limits which when everything else is high then its to be expected with him. He takes aspirin & has quarterly venesections which tends to keep him stable so no talk of meds till he's 60 or something changes. Haemo is never overly concerned by his WBC

[MJoye in reply to Chaz1]

Thank you for your response.

[clubdino]

Hello...I'm not sure how high the WBC count is but one risk of PV combined with high WBC is that those extra cells make the blood that much thicker and theoretically may put you at higher risk for a clot. On the other hand depending on how high the WBC count is you may have to wonder about MF. Waiting for the BM results is the hard part...can you believe in veterinary medicine when we would do a BMB we would get the results the same day!

[MJoye in reply to clubdino]

Hi, my count is usually between 18-21, I know it’s higher than what it should be but I have no idea what the upper limits are. My spleen is also slightly enlarged but I guess that’s the result of over producing red and white blood cells? Thank you for responding .

[clubdino in reply to MJoye]

Usually the upper limit for a normal WBC is around 11...give or take depending on the lab. With a count as high as yours and the splenomegaly I would be questioning MF maybe. Not saying it to scare you but just so you can research it some before you go back to your doctors for the BMB results.

[MJoye in reply to clubdino]

Really hope not but time will tell, thank you

[tracey13 in reply to clubdino]

My husband's white cells are going up. He's post PV MF .

We were looking into high white cells infection, stress and diet can causes changes in this.

He's on ruxolitanib and all his other bloods are in range apart from the white they are 17. His spleen has reduced from 21.2 cm to 15cm in 8 MTHS of being on ruxolitanib.

Tracey

Tracey

[MJoye in reply to tracey13]

Hi Tracey, thank you for your response. Has your husband always had a high WBC since the PV diagnosis? It sounds like the Ruxolitinib is working for him. Wishing you well Michelle

[tracey13 in reply to MJoye]

Yes his white count has always been more than 11 even on the ruxolitanib. His consultant said it's not alarming even at 17 when you have an Mpn.

His LFT liver function tests are creeping back up but he's gained a stone in weight since starting the ruxolitanib. We going on a low carb low sugar diet in January.

Believe it or not but food has a massive impact on your bloods.

He gets his bloods done every 4 weeks so his consultant keeps a close eye on his bloods.

Hope you have a lovely Christmas .

Tracey

[MJoye in reply to tracey13]

Thanks Tracey, I’d be really interested in the food impact on bloods. Is it just low carb low sugar or other foods that you know of? Michelle

[tracey13 in reply to MJoye]

It's only what we have researched ourselves.

If you look up why are my white blood cells going up.

It mentions diet eat low sugar and carbs when you look into it in more depth.

Everyone is different but it's worth looking at foods that are inflammatory .

Sugar plays a key part in your bloods .

Johnathan has been looking at doing a low GI diet .

He's got a stressful job so this doesn't help at all.

Tracey

[Manouche]

In case they discover you are HU resistant, you might consider the following trial : patientpower.info/myeloprol...