How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

I have MDS/MPN overlap with Thrombocytosis and MF and I've been on Hydrea to reduce my high platelet count for 14 months now. No itchness but I do get fatigued around 2 PM every day. A 30 minute nap is needed. But I'm 73 now and I don't think it's uncommon for someone my age to get fatigued. I also have HSN type 1 which is a hereditary form of peripheral neuropathy that comes down on the X chromosome. Thanks mom. I do have problems walking and with balance and sleeping at night is a problem because my legs cannot touch without pins and needles going off. So I sleep in a recliner. Just saw a Hematologist/Oncologist at the VA for an exam and he concluded that because I am JAK2 and SRSF2 positive that my life expectancy us about 2 years. I've had MDS/MPN for about 2 years so I guess either he's wrong or I'm a dead man walking. I prefer to think that this VA doctor is an ass. Strange thing - looking at me you wouldn't think I was sick. And that works for me.
Sorry, had to vent after getting this news.

Hi Pearly, I’m Tammy, almost 61 year old diagnosed at about the same time as you. I have an out-if-control Calreticulin gene in my bone marrow. I will have to deal it for the rest of my life. It’s very rare and, just like you, my platelets would be nearly at 1 million. I’m a little confused by the number you mentioned. Sorry. My number is reported as 800 but then x 1000, or 10 to the third, or 10 cubed. Whichever way you report it, it’s equal to 800,000. We have gotten it way down to 523, or 523,000 with Hydrea. That’s a good number, but it also means that I don’t produce the other parts of my blood so well. It’s better than throwing a clot or bleeding out if I had an accident. Anyway, since it’s rare, we need to be here for one another because I highly doubt if we will find a physical local group. Prayers for you, your family, care team and your endeavors.
Tammy

@texastee59 Hello Tammy, and welcome to Mayo Connect!

I'm glad that you joined this discussion on Hydroxyurea. I have had three surgeries for a rare type of cancer and I understand how good it is to connect with others who are also dealing with a rare disorder.

How are you feeling now that your platelet count is lower?

Hi Tammy,

I have MDS/MPN overlap with Thrombocytosis and MF. My platelet count was about 800,000 when I started on Hydroxyurea in January 2019. My platelet count is now about 250,000. Some of my other blood numbers are just outside the normal range but most are within the normal range. I go for blood work every month at Sloan Cancer Center. According to the Leukemia group at Sloan, my combination of three blood cancers is extremely rare so I joined their research group so they can run experiments on my blood and bone marrow. I’m told that I have a 30% chance of my disease mutating to full blown leukemia but a 70% chance it won’t mutate. I’m liking those odds. If it mutates or the Hydroxyurea stops working I suppose I’m facing a stem cell transplant. Hopefully that’s not in my immediate future. I also developed 4 leaky heart valves and had to have an ablation in December. The ablation went well and they stopped the extra 22,000 PVCs (extra beats) I was experiencing every day. The folks at Sloan said that there is research that links the JAK2 mutation gene with cardiovascular disease. Something called CHIP. So these mutations that we carry have found other ways to torment us. A gift that keeps on giving.

Wondering if there is anyone that has had problems with Bursitis like hip and leg pain, while taking Hydroxyurea. I have been diagnosed with ET and have been on Hydroxyurea for about 2 1/2 years. Recently began having A new problem with hip and leg.

Hi @huronshores, You'll notice that I moved your message to this existing discussion about Essention Thrombocythemia and the side effects of hydroxyurea. I'm tagging fellow members @shenriq @misty45 @kroolivera @esperanzam @susanellis @pearly @claire39 @mjpm2406 and @texastee59 to if they have experienced joint and bone pain while taking hydroxyurea.

The article by Mayo Clinic lists lower back or side pain as a common side effect and joint pain as a rare effect.
- Hydroxyurea (Oral Route) https://www.mayoclinic.org/drugs-supplements/hydroxyurea-oral-route/side-effects/drg-20068109

Huronshores, have your doctors linked the bursitis and hip and leg pain to the medication? Might there be other contributing causes?

There has not been a connection made. However, the Bursitis problem is one that
I have not experienced before in my almost 80 years. I am just asking to see if anyone
else has experienced this.

Good morning huronshores.......I have been taking Hydrea for almost two years and have back and joint pain that was existing before I was diagnosed, so I believe the pain is from arthritis. I take yellow cbd oil for sciatic pain, which works like magic, so maybe it is helping with joint pain as well. I wish you well with your journey with E T. I also have jak2 and myloproliferative neoplasm

Thank you for your response. It is helpful information and I hope you receive good care to keep you comfortable.

I did discuss with Pharmacist and he said it is possible side effect of Hydroxyurea meds (pills). The Optometrist did not agree, the Oncolologist really does not agree. A Doctors Assistant I saw for another matter looked up some info on Hydroxyurea and he said there is some evidence of the meds causing problems with Cutaneous tissue. I still have the problem with redness on bottom eyelids (although slightly less) and almost one year has passed.