Ongoing effects of ET and drugs

I'm 70, ET-CALR x15 yrs, HU x 6 yrs. Recently have been experiencing worsening skin itching and irritation, mild dizziness, lethargy, joint pain, and bloat. Low-level irritations from who knows where that leech enjoyment out of life. They seem to ebb and flow.

Bruises seem to last forever. Had a skin biopsy (benign), but site is taking a long time to heal.

Docs don't like to keep people on HU for more than 20 years. Other patients tell me that Peg seems to come with more side effects the older you are, especially depression, but sometimes the body acclimated. Could you ask the doc to lower yr dose?

One of the less common side effects of Pegasys but still listed as a potential is blurred vision. If you haven’t already, make sure you check with your doctor and eye doctor on this worsening symptom. It may be connected to the medication. There are other medical conditions which can cause blurred vision as well. So it’s important to find out…you don’t want to take chances with your vision.

Have you contacted your doctor about any of your concerns such as the large bruise marks where you inject the Pegasys or your vision?

Eb and flow is a great way to put it. I have had side effects from both HU and Pegasus. I am on smaller doses and every time I try and go up my body reacts. I need to find the happy ground where these meds do something but don’t take the enjoyment out of life.

I hear you. I was always really high energy, super organized, juggled a million things--typical Type A Virgo.

As a retired English prof, I have thousands of books I want to read for fun, and that's my go to when I'm going thru a low ebb period. I also knit baby blankets for the baby pantry. Really easy and mindless activity that makes you feel you're accomplishing something. I urged Dad to knit when he was sidelined with ET and emphysema but he was pretty entrenched in his TV routine.

I have an elliptical machine I use when I am sitting to get steps in and keep circulation going. (I wear a pedometer.) Used to love bike riding, but it makes me dizzy.

I use my crockpot a lot for days when cooking seems like a lot of effort.

I've cut my gardening back a lot, replacing most annuals with perennials and bushes.

Long story short, I have things to do on bad days so the no longer feel so bad. The daily yoga helps SO much, even if I just do 10 minutes in the chair.

Thanks for the reply, going to an eye doctor this month as Mayo is more concerned about that but they say the bruising is quite normal ?

Mark, unusual bruising is listed as one of the more common side effects of Pegasys. So you’ll most likely see interesting or unexpected bruises from time to time. That seems to be common in most blood conditions and sometimes from the meds used to treat.

I’m glad to see there’s an eye doctor visit scheduled. The worsening blurred vision is definitely something to have investigated…if for nothing else than peace of mind.

I was on HU for 6 months and had bad side effects. They stopped that and put me on angralide which was horrible for me with side effects. I visited the Mayo Clinic and the Hematologist told me she starts pts out with HU and if that doesn't work for the patient she changes them to Eliquis. I discussed this with my hematologist and he agreed. I have been on Eliquis now for 3 months and so far so good. I go back to see hematologist in August will be interested in seeing my platelet count

Did the Eliquis reduce your platelet count? What were your starting numbers and what are they now after 3 months on eliquis?

Eliquis is a blood thinner. I have been taking it for several years to prevent clots from AFib. Unfortunately, my platelets continued rising until I had to take Hydroxyurea. I am currently taking 500 mg HU three days a week.

I'm sorry I misunderstood, I thought you were off HU and only taking Eliquis......all the best wishes.....