Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I was diagnosed with ET on June 2,2023. Started on 1000 mg hydroxyurea (500 twice a day). My fatigue is getting better but my butt and leg pain has been getting worse. Wondering if this is a side effect of hydroxyurea or if my spine problem is getting worse. I can't get in to see the spine specialist until October.

UPDATE: Bottom line - pain was unrelated to ET. Had the appointment with the spine clinic. Got an MRI and discovered I have spondolythesis, spondolytis and severe arthritis and… read more

August 6, 2023 (edited)
 · 
Reactions
A myMPNteam Member

Since I posted this question I’ve been evaluated at the Cleveland Clinic. I have multiple degenerative conditions including spondylithesis, stenosis, scoliosis, hypertrophy, and radiculopathy from L2 through S1. A current MRI needs to be scheduled and then they’ll do injections. Hopefully I’ll experience relief by the end of the year.

November 12, 2023
A myMPNteam Member

Hydroxyrea wouldn’t cause you leg or back pain.
I have a bad back problem with pain everyday its arthritis

November 13, 2023
A myMPNteam Member

I have had back pain throughout my life due to a progressively-worsening spinal curve caused by idiopathic scliosis . About three years ago I had spinal fusion surgery along much of my back. That surgery was done a few months after I was diagnosed with ET due to CALR mutation. Recovering from surgery was hell but, miraculously, I no longer have back pain. I am, however, dealing with a variety of symptoms from ET and/or Hydroxyurea. Conclusion: At least for me, back pain and ET were not related.

November 12, 2023
A myMPNteam Member

Hi, curious to know if you still have the butt and leg pain? I have ET and have been using Icy Hot for about 2 months now....AND Aleve!!! For the same thing! I take 500 mg Hydrea a day and I do wonder if it's from that or something else. Take care!

August 24, 2023
A myMPNteam Member

I now ….

August 6, 2023

Related Questions

View All
A myMPNteam Subscriber asked a question 💭

A myMPNteam Member asked a question 💭
Alpine, TX

Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.
Already a member? Log In