Hydroxy - back & leg ache

[Lynzyc]

Hi

Hopefully someone can help, I was diagnosed with ET Jak2 back in 2017 at the age of 39.

Everything has been fine, levels always around 580 mark or below but live with really bad migraines. My consultant wasn't sure if it was due to the ET or not because my levels are fairly normal and bloods don't show any other problems, even though i read migraines were part of the condition for many. As they have been so bad we have started to trial Hydroxy which has definitely helped, but on the downside I have been getting lower back pain that shoots down my legs which constantly ache and stomach upset and has been ongoing for 4 days. Has anybody else had this and is it worth mentioning to the consultant? I did visit a couple weeks ago and my platelet levels had decreased down to 462.

Thank you.

Lynzy

[Endlesssunsets]

Hi Lynzyc

I also have ET- Jak2 -myleofibrosis now was on Hydroxy now for three weeks started Jakafi. While on Hydroxy over time had those shooting pains in my legs My Hemo said it’s the disease - I soak in lukewarm water in my tub sometimes I apply a cold pack to areas of my lower leg I have even rubbed Vicks on my leg- it’s a menthol like salve used for chest colds normally and I also get full fast and nausea also part of disease I am told but I am schedule with Gastro as I have vomited with it not all the time but have had issues. I also have headaches - I have had aura with the vision halos underwater fluttering like visual disturbances not sure what that is from but I commonly get these with headache. My platelets were stable. I am transitioning to Jakafi bc of mouth sores from Hydroxy. So now I am down from two Hydroxy to one with Jakafi twice daily. I am feeling not well, weak can’t sleep very well lately and I am very pale. I suppose it’s part of getting used to new med. all in all I did well on Hydroxy until the mouth sores started was going on 4 years with Hydroxy. I hope you feel better I have good and bad days, this might be the case with you as well. Hang in there - hoping you start having some better days with less pain. But I can relate to all you are saying, have had and still have the same symptoms.

[George1976]

Do you have spine problems? If your pain goes to your feet and it’s intense that might be at least contributing to your problem. I have CALR ET and lot of back pain that sometimes goes down the leg. I found that I have lower lumbar disk degeneration too but no spine docs advise surgery because the pain in my leg is not enough to suggest surgery will help.

[saltmarsh]

Hi Lynzyc. Sorry about the difficulties you are encountering. I am on hydroxyurea - 500mg once/day. I have always had a sensitive stomach which is more sensitive when I'm taking this med. I take mine at dinnertime with food. I've learned to avoid certain foods while on it, Also, I take a half pepto bismol tablet if stomach is unhappy. Seems to work for me. And I walk a lot. Don't know if that helps with this med but it is keeping some of those pains at bay. Good luck.

[hunter5582]

It can be a bit difficult to figure out when both the disease and the medication can cause the symptom. Sometimes timing is the best clue as to which is which. You are correct to think that back pain and extremity pain are known hydroxy adverse effects. Gastrointestinal issues are also a common hydroxy adverse effect.

online.epocrates.com/drugs/...

drugs.com/monograph/hydroxy...

Migraines with MPNs are often a microvascular symptom. This is not directly related to the number of platelets but about how the blood cells behave. Hydroxyurea can in fact reduce microvascular symptoms in addition to reducing the number of blood cells. Unfortunately, hydroxy can also have significant adverse effects for some.

Suggest a consult with a MPN Specialist at this point. Many hematologists rarely deal with MPNs. It helps to consult with a MPN-expert doc. Here is a list. mpnforum.com/list-hem./

Also suggest consulting with a neurologist who specializes in migraines. I experience a different type of migraine, not due to the MPN. I have had great success with a new class of migraine med, a CGRP-inhibitor (Ubrelvy). These meds came as a monthly injection or a daily or PRN oral. Very effective and very few adverse effects. You would need to consult with a migraine-specialist to determine the right approach for your case.

All the best moving forward.