High Platelets

I use a new needle and syringe each time. I just take 45 mcg out of the vial which is 180 mcg. Then return the vial to my refrigerator. It was stressful in the beginning because I had never injected anything before. But I quickly got used to it. I watched a couple YouTube videos and when I next went to the doctor had the nurse practitioner watch me to make sure I was doing it correctly.

How do you divide it? Are you using the same needle?
Thanks, Eileen

I have a part D, Aetna Silver Scripts plan. My doctor submitted the request and the approval came within a day or so. My co-pay is $1100 for 4 vials. My doctor instructed me to use each vial for 4 doses so that’s what I have been doing with no problems.

Hi Lourdene,

That is wonderful progress. I think you mentioned previously that you have a Medicare plan. If so, did you have trouble getting it approved? I just looked and four vials costs about $4,000 a month.

Best wishes, Eileen

Hi Eileen, I have been on Pegasus for 7 weeks, at a dosage of 45 mcg weekly. Last week I had my blood drawn and my platelets came down from 588 to 320, into the normal range. Unfortunately my white blood cells are now a little less than normal. I am going to continue this dosage for another month and have another blood draw. I have really not experienced any side effects from the drug up to this point. I have had ET for 30 years, but only recently found out I had JAK2, so I accepted that I needed to do something. Best of luck to you.

Hi Eileen,
So i have been in Pegasys for 3 months now. I inject once a week and use only 1/4th of a 180m vial which is standard size. This is a starter dose and my hemo may raise. I have my 3rd blood draw tomorrow. I started at 950 platelet count and went to 900 then 869. My only side effects are less sounds sleep, but I have more energy and less itching. So, so far, pleased with the drug overall. It is very $ as it is a tier 5 immunotherapy drug. I like that over a chemo drug like Hydroxy. One builds, one tears down, or at least that's what it sounds like to me. Hope your decision gives you a better pathway to healing. I'll post my numbers as this will be 3 months of data...be well!

Hi Mortysdad…

I am very interested in your progress with Pegasys for ET JAK2. I was started on 500 mg HU daily but started with daily headaches. I was taken off it for a few weeks and restarted on 500 mg HU every other week. Well, headaches have started going from mild to now every day and sometimes a migraine. When I see my hematologist I think Pegasys might be in my future.

Did you start weekly, dosage, progression?

Thank you, Eileen

That’s all interesting. I appreciate hearing other stories. With my ET/CALR I have the interesting issue of Acquired Von Willebrand Disease. It’s a failure to clot issue which is so counterintuitive. I’m not at a high risk for thrombosis but a very high risk for bleeding out now. Two rare chronic conditions. The use of anagralide is in hopes of controlling aVWD where the HU has not helped it. I’m 53 and 110 lbs and in pretty good physical condition. Like I mentioned just fighting fatigue and headaches. Stay tuned… 🙂

Yes, and Yes I am doing the 500 mg twice daily (one in AM one in PM) and two days a week I take an extra 500 mg. with the following week, three extra 500 mg. This exact dosage has gotten me in a safer place with my platelets. I also take 81 mg aspirin each PM. as well as other heart medications.
I am somewhat familiar with ALPHA INTERFERON, not for this disease, but back in 1991 they were using it to treat HEPATITIS C (which my first husband acquired during blood transfusions/cancer treaments back when they did not know about it or screen for it). I gave my husband ALPHA INTERFERON injections 30 years ago. They did not have much of a beneficial effect on him for this condition, and as they yet had no cure for the HEP C in those years, he passed away about 3 years after diagnosis. But it would be interesting to see how effective it has been in the treatment of Essential Thrombocythemia.

I have gotten my platelets down to 388,000 but it has take a long time and it has been all over the chart. When I was first diagnosed, they were 1,250,000 I was first prescribed 2,500 mg of HYDREA daily and gradually the dosis was lowered. We have found a pretty stable dosage of 1,000 mg daily x 7 plus one week I add 1,000 (2 500 mg tabs) and the next I add 1,500 mg. My oncologist feels that if I can keep my platelets below 500,000 I am doing well. Of course, I prefer them closer to 400,000. But I also have to watch my red blood cells and white blood cells which are a little on the low side right now.
I take an 81 mg aspirin every evening. I looked at ANAGRALIDE. My first doctor had mentioned it as a possibility if the Hydrea needed something more. but so far I have had success with the Hydrea plus the baby aspirin.
I read this interesting article recently about ANAGRALIDE on PUBMED.GOV website:

Hydroxyurea compared with anagrelide in high-risk essential thrombocythemia
Abstract
Background: We conducted a randomized comparison of hydroxyurea with anagrelide in the treatment of essential thrombocythemia.

Methods: A total of 809 patients with essential thrombocythemia who were at high risk for vascular events received low-dose aspirin plus either anagrelide or hydroxyurea. The composite primary end point was the actuarial risk of arterial thrombosis (myocardial infarction, unstable angina, cerebrovascular accident, transient ischemic attack, or peripheral arterial thrombosis), venous thrombosis (deep-vein thrombosis, splanchnic-vein thrombosis, or pulmonary embolism), serious hemorrhage, or death from thrombotic or hemorrhagic causes.

Results: After a median follow-up of 39 months, patients in the anagrelide group were significantly more likely than those in the hydroxyurea group to have reached the primary end point (odds ratio, 1.57; 95 percent confidence interval, 1.04 to 2.37; P=0.03). As compared with hydroxyurea plus aspirin, anagrelide plus aspirin was associated with increased rates of arterial thrombosis (P=0.004), serious hemorrhage (P=0.008), and transformation to myelofibrosis (P=0.01) but with a decreased rate of venous thromboembolism (P=0.006). Patients receiving anagrelide were more likely to withdraw from their assigned treatment (P<0.001). Equivalent long-term control of the platelet count was achieved in both groups.

Conclusions: Hydroxyurea plus low-dose aspirin is superior to anagrelide plus low-dose aspirin for patients with essential thrombocythemia at high risk for vascular events.
Hydroxyurea plus low-dose aspirin is superior to anagrelide plus low-dose aspirin for patients with essential thrombocythemia at high risk for vascular events.

I guess if I have a future problem with Hydroxyurea, the doctor would put me on ANAGRALIDE. Would very much like to keep in touch in this regard. I don't think you mentioned your age. Or I didn't see it. I am 72. Was 65 when first diagnosed.