I’m awaiting my JAK2 V617F status and overwhelmed by so much information. I’ve had several episodes of left side abdominal pain over the years. It was long lasting and recently I was diagnosed with constipation in urgent care. My HCT was slightly elevated but the rest of my blood work was ok. My severe pain was relieved with laxative treatment but it still felt sore over the last 3months. Lots of gurgling and I self treated for trapped gas etc as I thought I was dealing with digestive issue. I also laid off milk and added fiber. That pain is much better but I saw my Doctor this week and my HGB (16.8) HCT (49.2) RBC (5.49) WBC 4.5 BUN 21mg. He ask me to return for some additional bloodwork which included Erythropoietin ( 2018 was 3.4) and I just received 2/2023 results of (4.7) & I’m waiting for JAK V617F. I had no idea what it was until I goggled it. I’m so afraid. In past blood work slightly evaluated readings I was told in dehydration. And retested several months in a row and I would get normal but on the high end readings. Was my abdomen pain a swollen spleen. Does anyone have any insight while I wait this all out. If my JAK is negative can I be relieved? If I took cold medicine (Sudafed ) the day before bloodwork would that effect my blood?
I don't have an official diagnosis as of yet, but I feel like I need to scale back. I haven't yet, but I realize I'm probably going to need to slow down a little.
I don't have an official diagnosis as of yet, but I feel like I need to scale back. I haven't yet, but I realize I'm probably going to need to slow down a little.
Yes I was the same and scared I am two years in now
My playlets were high as with my blood count the team at chemo hospital gave me venesection to reticent blood count plus put me on chemo tabs I have got my head round it now and am living with it
Yes I was the same and scared I am two years in now
My playlets were high as with my blood count the team at chemo hospital gave me venesection to reticent blood count plus put me on chemo tabs I have got my head round it now and am living with it
I have seen my family doctor who sent me for more bloodwork. I seen a specialist who didn’t have my test results yet. I called him again on Friday, cannot get an appointment til Dec 21. My family doctor thinks it’s Polycythemia Vera because of my high red blood cell count and numbness in my legs. I’ve had one phlebotomy so far.
My Polycythemia Vera and JAK2 positive test and diagnosis was on Nov. 25, 2022. After starting 1000 mg Hydroxyurea daily, 4 Phlebotomies and weekly CBC labs I was advised to return in late February for a CBC review. HCT history went from 66.3 to 37.6 as of Jan 26, 2023. HBC dropped from 21.6 to 12.6 over this period. I am 70year old female. Currently I am following my blood glucose levels (over the years successfully controlled by diet) it has shot up from 90 to 150 I am wondering if this is something that is to be expected.
My Polycythemia Vera and JAK2 positive test and diagnosis was on Nov. 25, 2022. After starting 1000 mg Hydroxyurea daily, 4 Phlebotomies and weekly CBC labs I was advised to return in late February for a CBC review. HCT history went from 66.3 to 37.6 as of Jan 26, 2023. HBC dropped from 21.6 to 12.6 over this period. I am 70year old female. Currently I am following my blood glucose levels (over the years successfully controlled by diet) it has shot up from 90 to 150 I am wondering if this is something that is to be expected.
I’m no Dr. but I believe the HU is prescribed first.. I was almost 67 when I was diagnosed in spring of 2021… I had 4 phlebotomies(1 per week for a month), was put on aspirin, and HU… My oncologist’s main focus was lowering the HCT which was very high… I should say that I never even heard of PV before I was diagnosed… In my case, I have tolerated the HU very well.. I currently am taking 7500 mg per week.. I am also very active.. I bike every day as long as the weather allows for it and also do a lot of walking… Long sleeves and sunscreen are a must on sunny days… Honestly, despite taking HU, I feel really good.. no symptoms, high energy, no issues.. I also understand that some people cannot tolerate HU at all… It effects people differently… Hope this helps and best of luck to you and your husband..
Connect
Connect
Like
Helpful
Hug
I’m awaiting my JAK2 V617F status and overwhelmed by so much information. I’ve had several episodes of left side abdominal pain over the years. It was long lasting and recently I was diagnosed with constipation in urgent care. My HCT was slightly elevated but the rest of my blood work was ok. My severe pain was relieved with laxative treatment but it still felt sore over the last 3months. Lots of gurgling and I self treated for trapped gas etc as I thought I was dealing with digestive issue. I also laid off milk and added fiber. That pain is much better but I saw my Doctor this week and my HGB (16.8) HCT (49.2) RBC (5.49) WBC 4.5 BUN 21mg. He ask me to return for some additional bloodwork which included Erythropoietin ( 2018 was 3.4) and I just received 2/2023 results of (4.7) & I’m waiting for JAK V617F. I had no idea what it was until I goggled it. I’m so afraid. In past blood work slightly evaluated readings I was told in dehydration. And retested several months in a row and I would get normal but on the high end readings. Was my abdomen pain a swollen spleen. Does anyone have any insight while I wait this all out. If my JAK is negative can I be relieved? If I took cold medicine (Sudafed ) the day before bloodwork would that effect my blood?
-
Like -
Helpful -
Hug
3 ReactionsHow long does it usually take for a phlobotomy? I started with 30 minutes but now it seems to take about an hour. Any ideas why?
-
Like -
Helpful -
Hug
1 ReactionI don't have an official diagnosis as of yet, but I feel like I need to scale back. I haven't yet, but I realize I'm probably going to need to slow down a little.
Hi Jules, good questions for @mumma and others living with PV like @kat101 @buckaroobanzai @mattymatilda @bohobruja @chadknudson @mikepv.
@julesc, are you finding that you are able to continue working and your regular activities or do you have to scale back?
-
Like -
Helpful -
Hug
1 ReactionChemo tabs? I didn’t know anything like that existed? Are you able to work and do your regular things or have you had to scale back?
Yes I was the same and scared I am two years in now
My playlets were high as with my blood count the team at chemo hospital gave me venesection to reticent blood count plus put me on chemo tabs I have got my head round it now and am living with it
-
Like -
Helpful -
Hug
2 ReactionsHave you learned anything new? I’m at early investigative stage and scared. My red blood cells are high as is my B-12.
Good to hear your ht levels have gone down and it’s so good to have someone to chat to with the same condition as myself I am also in my 70 s
My Polycythemia Vera and JAK2 positive test and diagnosis was on Nov. 25, 2022. After starting 1000 mg Hydroxyurea daily, 4 Phlebotomies and weekly CBC labs I was advised to return in late February for a CBC review. HCT history went from 66.3 to 37.6 as of Jan 26, 2023. HBC dropped from 21.6 to 12.6 over this period. I am 70year old female. Currently I am following my blood glucose levels (over the years successfully controlled by diet) it has shot up from 90 to 150 I am wondering if this is something that is to be expected.
Thank you for this article I am 77 and in the same position as you so good to find others with the same condition my medication is similar too