leg pain below knee bilaterally in ET treated with Hydrea.

[Rita-Lou]

leg pain bilaterally in ET treated with Hydra ( diagnosed 2014)

Does anyone else have this?

[Scottishterrier]

Hi Rita -LouHave been on it for many years with no problems apart from nausea to start with but now on drugs for it I was diagnosed in1994 if you're leg is red and hot to touch don't think it would be the weather I would get in touch with your doctor or consultant also if swollen definitely get it checked out just incase it not to alarm you lt could be a DVT your GP would be able to tell you if it is or not just to be on safe side

Stay safe

Scottish terrier xx

[hunter5582]

Leg pain is a pretty broad term. there are many different types of leg pain. Some can be related to the ET, some related to HU, and some unrelated to either. Here is a partial list of related issues. The unrelated list would be too long.

ET - Bone pain, systemic inflammation. paresthesia, erythromelalgia

HU - gout, edema, peripheral neuropathy

If the pain is a new symptom then it is something that needs to be reviewed with your care team. Pasin is a warning that something is wrong. Best to get it assessed and dealt with ASAP.

[Rita-Lou in reply to hunter5582]

Many thanks. I am pretty certain that it is related to both. I also have serious osteoporosis from seven years of hydrea and have broken many bones. Just wanted to check with others.I have checked with several doctors. As I am an 86 year old woman, it is difficult to be taken seriously. However, I have two good specialists

[hunter5582]

It is never acceptable to be disregarded in medical care. Medical gaslighting is unacceptable at any age. We recently had a conversation about hthis on the forum. healthunlocked.com/mpnvoice...

Unfortunately. HU can have significant side effects. The ET itself can as well. many on the forum have had similar experiences. Fortunately there are other options to treat the ET if HU is what is causing the problems.

It may be that the pain is related to the ET or is something unrelated. It is important to find out what the issue is and get it resolved. Pain is not OK

Hope you find a speedy resolution.

[Inca]

Hi Rita -Lou,I am 82 ,PV for 12 yrs I have hip ,leg,wrist pain & otherpains ,an active life with horses ,several fractures over those competitive years & some P V years. I have osteo arthrose,now very painful some days I am unable to walk my dogs.....I am taking Jakafi ,I don’t think getting older & expecting to be as active as you want to be is not always possible.So my consultant tells me !!

Best to you.,& keep going.