Normal playlet count

[Debbweb01]

My platelet count is 363! Is that low! It says 363X10(3)mcg I'm just very weak and in cold sweats and have PV but have been in remission! Have many autoimmune diseases as well as PV! Not myself at all hi white count too!

[Mwalimu]

Is it possible to be in remission from PV?

[Paul42 in reply to Mwalimu]

Where cancers are concerned there are a number of different types of remission. You have total remissions which are a period of time without any evidence or symptoms of the disease, i.e cured.

With things like PV you would normally talk about it being haematalogical remission, this means blood counts being controlled without the need for venesection for a period of time (dont know what that is but guess got to be looking at least a year), i.e using drugs such as hydrea, inteferon, rux etc, or without any other influencing factors such as bleeding etc.

[Debbweb01 in reply to Paul42]

Thank you so much for that reply! I'm confused of late due to fact I have another very rare blood disease! I'm in warfarin for life so maybe it's helping my PV and I guess I'm in some kind of remission! You ant the others have cleared things up my Hemotologist hasn't! I thank you for that! My Hemotologist did tell me it cud happen anytime again and wen I get itchy he does check my blood! So therefore I guess there is no cure! One big question I have is my white count has always been high! For short periods it goes normal! Now it's spiking again! I don't have any infections! Also had bone marrow biopsy and have been ok! My Hemotologist says white count has nothing to do with PV, but I read somewhere that it did! Is that true! Also I noticed on here some people with PV are also anemic! I'm the opposite I have high iron stores??? I only went anemic once after heart surgery and needed blood and recently after a major stomach surgery for a blockage! That was # 6 tummy surgery for me! Thx so much for your patience and helping me to understand this! I get confused be soo seem to collect autoimmune diseases! My APS/Hughes Syndrome is another thick blood clotting disorder! They call it sticky blood! I hope and pray u are wel and happy and have some good Docs in the UK! Here in USA they frown upon me because I'm so very complicated! They actually have told me to be quiet because I talk too much and I'm too complicated and they just put a band aide on me instead of looking for the answer! They always pass the buck and send me on wild goose chases to various expensive specialists, who tell me after a battery of tests that I have an unknown virus running thru my body! I don't go to anymore SPECIALSTS anymore because I find their answers unacceptable! Thx again it's so greatly appreciated! God Bless You!!!

[Paul42 in reply to Debbweb01]

Hi

I have been anaemic caused by bleeding from varices in my stomach, i have these as a result of the extrra pressue caused by my enlarged spleen. This proves a complication for me as i end up under different teams as it sounds like you are.

Elevated white blood counts (or low) arent uncommon in MPN patients, my sister has ET and hers are slightly higher than normal.

All the best, it sound like a complex situation you have been dealt.

Paul

[Debbweb01 in reply to Paul42]

Can they remove ur spleen? Will it stop if removed! I hope u get answers too!

[Paul42 in reply to Debbweb01]

I wouldnt want them too, despite the issues its better to have one.

[Debbweb01 in reply to Paul42]

Thanks Paul! I'm very complicated and my docs tell me that all the time! I've been in weakend state for 3 weeks now and told to go to a neurologist, that they're the worst for APS! They don't know or even recognize it! So I research and take care of myself! I found out I was low in Vit D, B12 & Magnesium! I ordered thes vitamins and trying to get stronger on my own! Today I woke up a bit better! Yesterday I was up for 2 hours and that's a plus! Hopefully I'm on the right track! Thx so much for ur input! Godspeed!

[Debbweb01]

I don't need to be phlebotomized anymore, so I just assumed I'm in remission! I'm not well since beginning of August! Cold sweats, weakness, & pains all over my body! I'm in AC now and in a sweat beyond excessive! I do have APS/ Hughes Syndrome another rare blood disease of thick blood! Lost my left leg to it! Took my whole life to be diagnosed! I have Sjogrens and RA/ Rheunatoid Arthritis! I'm to start Plaquinil but in weakend condition I'm afraid to start due to side effects! I asked if my playlets too low and I don't know! My docs here in USA just yell at me because they say I'm too complicated! Something is wrong and it seems only I'll b able to find it as I DX'd myself with PV many years ago! Thx for ur response! If anyone knows about normal playlet count pls let me know as my doc don't do much here until I lost my leg! Sorry if I sound down, I'm usually a tough positive person with the energy of a horse! Even with prosthetic leg on my feet 18 hrs a day! Now up 5 min for a drink then back to bed! I don't like this because I'm afraid of what I said many time b4 I lost my leg! There's something wrong and they're not getting it! I hope and pray it won't b too late! I hope ur well and getting on with ur best! Thx for ur response! Godspeed!!!

[piggie50]

Hi,

Normal platelet count in an adult is between 150 and 450, this is X by 10 if you are in the US. So I would say yours are spot on! I have PV diagnosed 10+ years ago and I was not aware that it could go into remission? You say you diagnosed yourself, have you had the necessary blood tests to confirm you have PV? Do you have any of the other markers associated with an mpn ie JAK2 or CALR?

Best wishes.

[Debbweb01]

Yes I had them 13 years ago in a very good hospital! A lot of bloodwork I recall! There for hours! Yes my RBC and hemoglobin and hematocrit hi! The Phlebotomies helped me and after 10 years they stopped! My white count always hi too they had no idea why! Still don't know why! I use to itch and felt full wen needed phlebotomies! Still itch all the time! I don't know y my counts came down but I'm glad they did! Don't have pos JAK 2 gene! Thx for ur input! It's greatly appreciated! I'm unwell now, but have many issues! I'm complicated! Have been all my life! Had Juvinile Rheumatoid Arthritis! Had lots of hospital stays and came home without knowing what it was! Always weird stuff! That's why I'm trying now to figure myself out again! I havnt felt this bad since last year when DX'd with APS! Thx again! Glad my playlets good! Hope you r good too! Godspeed

[sschram]

eat raw garlic at least once a day. lots of liquids and force urself to get ur blood flowing

[MarkD6701]

My platelet count currently stands at 113 due to the Hydroxycarbamide. However, that's where they want it to be and I always thought that PV & ET are lifelong conditions and can never be cured.

[Debbweb01 in reply to MarkD6701]

Hi is Hydroxycarmide the same as Plaquinil? I'm suppose to start that soon! Also does PV affect your white count too? Thank you! You seem very smart and well versed in whT you say and I appreciate ur response!!! Godspeed

[Captaincorbett]

Think 363 is pretty good , hope you feel better soon x

[Debbweb01 in reply to Captaincorbett]

Thx so much! Godspeed