1. < Blood Cancers & Disorders

High Platelets

Posted by mtnlife @mtnlife, Nov 15, 2022

Good afternoon. I am new to this sight and am looking for some reassurance. I do not want to get ahead of myself. I am a relatively healthy 71-year-old woman. I was diagnosed two years ago with atrial fibrillation but that is well controlled with a beta blocker. Early in September 2022 I went to my PCP for an annual wellness visit and he ordered several panels of blood tests as I have not had bloodwork done in over two years. EVEYTHING came back well within normal ranges except for platelets which were 551. A repeated test 6 weeks later was not much better as platelet count was 530. Iron studies were ordered, and they are very normal. My PCP referred me to a hematologist who reviewed my charts. An initial appointment is scheduled for December 8. I have no symptoms of illness and feel very well. I am very active. On the one hand I think that if the doctors believed this is an urgent situation, I would be seeing someone sooner. On the other hand, there are shortages of health care workers even in the highly rated teaching hospital all my doctors are affiliated with so perhaps December 8 is really the first time anyone can see me. Has anyone in this group experienced similar conditions. What, if anything, should I be on the alert for in the next few weeks. Thanks for reading!!!

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lourdene | @lourdene | Feb 9, 2023
In reply to @nohrt4me "Yikes! $1,100 per month copay? Still way out of affordability range for most people." + (show)
@nohrt4me

Yikes! $1,100 per month copay? Still way out of affordability range for most people.

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Actually, the $1100 co-pay is for four vials. One vial contains 4 doses so it lasts a month. There are assistance programs available for people who need them.

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mortysdad | @mortysdad | Feb 8, 2023
In reply to @mortysdad "Hi Eileen, So i have been in Pegasys for 3 months now. I inject once a..." + (show)
@mortysdad

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!

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So just had my 3rd month blood draw and I went down another 50pts to 817...patience is a virtue right?!!

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darlaburley | @darlaburley | Feb 8, 2023
In reply to @nohrt4me "Yikes! $1,100 per month copay? Still way out of affordability range for most people." + (show)
@nohrt4me

Yikes! $1,100 per month copay? Still way out of affordability range for most people.

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I had commented before that funding is available for a lot of our drugs. I am on Hydro and Anagelide. My doctor's nurses got funding for anything my medicare supplement didn't cover. I use to be on Revlimid which was $19,000/month. That was for only 3 weeks a month as I had to give my liver a break on week 4. Everything got covered so be sure to mention it to your doctor about the possibility of funding. Good Days is the funding I'm on now.

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nohrt4me | @nohrt4me | Feb 8, 2023

Yikes! $1,100 per month copay? Still way out of affordability range for most people.

REPLY
2 replies
eileen11108 | @eileen11108 | Feb 8, 2023
In reply to @lourdene "I use a new needle and syringe each time. I just take 45 mcg out of..." + (show)
@lourdene

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.

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Thank you. Please update us when you get labs.
Many thanks, Eileen

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lourdene | @lourdene | Feb 7, 2023

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.

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1 reply
eileen11108 | @eileen11108 | Feb 7, 2023
In reply to @lourdene "I have a part D, Aetna Silver Scripts plan. My doctor submitted the request and the..." + (show)
@lourdene

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.

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

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lourdene | @lourdene | Feb 7, 2023

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.

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1 reply
eileen11108 | @eileen11108 | Feb 7, 2023
In reply to @lourdene "Hi Eileen, I have been on Pegasus for 7 weeks, at a dosage of 45 mcg..." + (show)
@lourdene

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.

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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

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lourdene | @lourdene | Feb 7, 2023
In reply to @eileen11108 "Hi Mortysdad… I am very interested in your progress with Pegasys for ET JAK2. I was..." + (show)
@eileen11108

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

Jump to this post

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.

REPLY
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