Pegasys for polycythemia vera
Common Questions and Answers about Pegasys for polycythemia vera
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I am using Pegasys 180mug q/wk as an off label use to treat Polycythemia Vera and it works well.I will have to take this med the rest of my life. I am aware of the short term side effects, but what about long term side effects? What can I expect years from now?
My maternal grandfather and my mother both had polycythemia vera should I be tested for the jak2 gene?
I have a question please IF anyone can ANSWER MY question i was diagnosed with polycythemia vera my is hemoglobin was 19.7 so i was tested for the jak2 mutation gene says negative now i have chronic myeloproliferative disease i dont know what that means also i have 6 nodules apperaing on Ct the biggest BEING 16 mm there is 2 OF that Sie others aré 14mmx7.2 a could more at 15mmx5.1 please DOES anyone know what all this means I have been GOING TO CANCER INSTITUTE .
I recently had blood tests that showed very high levels RBC and excessive erythropoietins. My doctor said I have polycythemia and is sending me to a hematologist/oncologist to check for tumors. I have done some research online and there is little information about this. I am now waiting for results of a CT scan ran yesterday. Now that I am a nervous wreck..I wondered if anyone else has this. My only symptoms are fatigue, headaches, and weight gain.
He was diagnosed last December after a stroke (49 years old) and i was just recently diagnosed but the strange thing is that he was negative for the JAK2 gene BUT i was positive for it. For some reason that just seems so strange to me!!!!!! Meaning if having the disease passed down, then the inherited aspect is not in gene mutation itself but something underlying it. Id like to understand and the internet really doesn't say a hell of a lot. Its great you can just go and give blood.
Hi, polycythemia vera is a blood cancer, but you only have polycythemia - which simply means an increased number of red blood cells but not being a cancer.
TRT is known to cause polycythemia, but I don't think that leads to polycythemia vera. The possible risk that is talked about is from blood clots, because the blood gets thickened. However, your hematocrit is 49.6%, while the level for any worry seems to be 52% or greater.
You can donate a unit of blood to reduce the number of RBCs.
I also would like to impose the question of prognosis for polycythemia vera. None of the doctors are willing to state or predict life expectancy, I only know what I've read on the internet. Thank you for answering our questions.
I was diagnosed last July with PV but I have been over and over my labs and they make no sense. White blood count always slightly elevated for the last 4 years, RBC ALWAYS normal, Hemocrit always normal, Hemoglobin usually 15.7 to 16.8,MCH always normal, MCHC has been high 3 times in the last four years, Absolute neutrophils always high, platelet count always normal, MPV always low, a/g ratio always low, bun/creatinine always low. I think I have a blood disorder but not the Polycythemia Vera.
I was just diagnosed with Polycythemia Vera. This is a slow growing blood cancer. I have struggled with a great deal of health problems and was going crazy trying to figure out what, if any, was wrong with me. I only found out because my brother had 2 strokes a year and a half ago and was diagnosed with Polycythemia vera 8 months ago. So we both have it.
My question is this.... My brother did not have the gene mutation that at least 80% of the people have with PV.
s, and no diagnosis until i was sent to a Hematologist/Oncologist. Being aware that my brother had Polycythemia Vera she immidiately tested me for the JAK2 gene mutation, in which strangely came out positive. So, not only does my brother have PV, I do but what i don't understand and which is driving me nuts because there is no information online, is;
1) Is this an Inherited disease or not, because i am getting so many different answers for this.
There are 2 types, polycythemia vera or secondary polycythemia. Make sure to find out what type you have. If it is secondary, as is mine, the doctor needs to find the first cause. Mine is from a tumor hiding in my body somewhere...getting MRi's and CT scans to find out where but, smoking is the first thing that must stop as it makes everything much worse. I also have emphysema but its not bad enough yet to be causing the polycythemia. Wish there was more info about this...
Hello everyone. My first question & main concern is.....should we wait for hema/oncology drs.appointment (that primary doc. hasn’t even made yet) or seek quicker medical care. My husbands blood counts are:
Hgb 21.2 Hcrit 63.7. Plat 429 RBC 7.47 I’m aware that most likely his Dx is going to be Polycythemia Vera. I feel like he’s a ticking time bomb (blood clots) right now & really just want to put him in the car & go to ER. Any thoughts would be appreciated.
s, and no diagnosis until i was sent to a Hematologist/Oncologist. Being aware that my brother had Polycythemia Vera she immidiately tested me for the JAK2 gene mutation, in which strangely came out positive. So, not only does my brother have PV, I do but what i don't understand and which is driving me nuts because there is no information online, is;
1) Is this an Inherited disease or not, because i am getting so many different answers for this.
Hi. Polycythemia is a condition wherein there is an excess of red cells in the blood. Having a proliferation of red cells can cause the blood to thicken considerably, and can sometimes lead to certain complications like stroke. Polycythemia can be primary or secondary. Secondary polycythemia means that the excess in red cells is due to an outside stimulus, such as lack of oxygen from living for a long time in high altitudes.
Elevated WBC or leukocytosis may be caused by several conditions including bacterial infection, inflammation, leukemia, lymphoma, trauma, use of certain drugs (steroids, antiseizure medications), myeloproliferative disorders of the bone marrow (chronic myelogenous leukemia, polycythemia vera, myelofibrosis, essential thrombocythemia), inflammatory bowel disorders (Crohn’s disease, ulcerative colitis), burns or stress (physical or emotional).
Hi, My elderly mum has had Polycythmia Vera for a few years and is getting thinner and more sick.
She has had the blood letting, blood thinners, chemo pills, but is getting worse.They don't work.
She has a very enlarged spleen.
The specialist has mentioned to her that she may qualify for a new Tyrosine Kinase Inhibitor to reduce the size of spleen, and hopefully help her.
First she must have a Bone Marrow biopsy.
Can anyone give me any advice on any of this, as my mum is so scared.
I only found out because my brother had 2 strokes a year and a half ago and was diagnosed with Polycythemia vera 8 months ago. So we both have it.
My question is this.... My brother did not have the gene mutation that at least 80% of the people have with PV. They found it with a bone biopsy. In my case, my doctors knew he was PV positive tested me for the gene mutation after a series of abnormal blood chemitry tests. I came out positive.
s also possible that you either live in high altitudes, or have polycythemia vera, or some respiratory disorder. You need to consult a hematologist. Your symptoms can be due to low vit B12 and iron or due to other causes. Hypertension or high blood pressure can also cause tinnitus and visual disturbances. But since you have numbness/tingling in arms and legs, visual disturbances, tinnitus, dizziness and general weakness, you probably have polycythemia vera. Take care!
This type of blood picture can be seen in dehydration, polycythemia vera, Dengue and chroni cobstructive lung disease. Hemochromatosis too should be looked for. Please consult a hematologist. Take care!
Hi. Polycythemia vera is a disorder where there is a bone marrow disorder wherein there is an abnormal increase in the production of red blood cells. This results in a thicker, more viscuous blood which is more prone to develop blood clots (thrombosis). Some of this thicker blood forms a sludge and gets trapped in the spleen, causing it to enlarge. This is the reason why your doctor is trying to feel if your spleen is indeed enlarged.
Hello. I'm a 55 year-old female, recently diagnosed with Polycythemia Vera/Essential Thrombocythemia, Dec 2021. JAK2 test: positive for mutation. Hemoglobin has always been normal, Hematocrit usually only ever slightly elevated and for past 6 months has been normal. RBC and WBC usually slightly elevated. Platelets seem to fluctuate a lot and currently at 730 (highest was at 800). My ferritin is now (finally!
Swollen and hot hands and feet can be due to arthritis, especially rheumatoid, gout, polycythemia vera causing clots in small blood vessels, deep vein thrombosis, allergic or contact dermatitis, and acromegaly.
Since I cannot examine you and know other related conditions you may be having, nor is a detailed history possible on net, I have listed the various possibilities that should be looked into. Please consult your PCP to run tests and examination to clinch a diagnosis.
Take care!
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