I have written here recently that I have ET/ Jak2 and am showing signs of progressing to PV.
I got a phlebotomy about a month ago and since then have experienced stomach issues 24/7 of nausea, headache, stomach pain, indigestion, acid reflux, constipation/ diarrhea , and just feeling like I have the flu. I stopped taking hydrea for a week and nothing changed. Has anyone had this experience and found out that it is an ulcer of some kind as a result of having PV?
I also suffer from hypertension, renal stenosis, and kidney stones.
Thanks !
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Auggie17
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As you are aware, HU can cause significant GI issues. I found it took about 3 months after discontinuing the HU for the GI system to recover. Note that aspirin can also cause GI irritation, including GI bleeds. PV in and of itself does not cause ulcers as far as I know. However, the JAK2 mutation does cause an increase in inflammatory cytokines which can make things worse. GI inflammation can increase thrombocytosis. There is also a feedback loop via the Gut-Brain Axis where GI inflammation can increase anxiety-depression-insomnia and vice versa.
Suggest reviewing your diagnosis and treatment options with a MPN Specialist. As you know, needing a phlebotomy is indicative of progression to PV. There are other very effective treatment options, including Besremi and Jakafi. Like you, I experienced GI and other issues with HU. I have done much better on Besremi. It is more effective and much easier to tolerate for me.
Just in case you have no seen them, here are two lists of MPN expert docs.
Thank you Hunter. I am on aspirin and both my hematologist and the PA at MD Anderson who responded to my message yesterday say that my GI issues are not related to ET or PV. They are not suggesting to stay off the HU for an extended period of time. They think I need to address it with a gastroenterologist . I am extremely frustrated and hope my internist today will fully explore my stomach issues to at least get to the bottom of it. I did read on the Cleveland Clinic website that ulcers can be a secondary side effect of PV.
The timing of when the GI symptoms began may be the best diagnostic clue. If the symptoms did not appear until after starting on the HU or aspirin, then it is logical to look at HU or aspirin as the cause. My PCP likes to say "The simplest answer is the best answer."
You should definitely follow up with a gastroenterologist. You need to have a better idea of what is going on in your GI system. You also need to know this in order to move forward with your treatment for PV.
It is worth noting that your body is an integrated system. The overproduction of inflammatory cytokines and histamine caused by the JAK2 mutation is not doing your GI system any favors. There could also be risk of a thrombotic or microvascular issue in your GI system if the PV is not treated properly. GI irritation can cause reactive thrombocytosis. I consult with an Integrative Medicine doctor to look at treating systemic inflammation as a pervasive issue that affects many body systems. My anti-inflammatory treatment is definitely helping.
Once you have the information you need, you can make a determination about your treatment for PV. If HU is causing or worsening GI issues, then you may consider yourself HU-intolerant and pursue other treatment options such as Besremi or Jakafi. Pegasys is also an option if the diagnosis stays ET. Note that I did use Pegasys before Besremi was available. Like Besremi, it was easier to tolerate and more effective than either HU or phlebotomies for me.
Sorry about your gastro issues. I agree with everything Hunter posted. I've had digestive tract issues my entire life and my initial experience with hydrea was challenging. Three years later and I continue with it and numbers are good with very few issues at the ripe old age of 77. I'm very careful with what I eat, and only take the hydrea on a full stomach. The other thing I learned the hard way is that alcohol (highly inflammatory) does nothing good for my digestive tract nor my general well being. I wish you all the best in figuring this out. We are all different in the way our bodies respond but I can say that there is a solution out there for you. Wishing you the very best.
I have ET w/ jak2 and same symptoms I had severe portal vein thrombosis and blood building up in my stomach and colon. I'd keep an eye on you blood work to see if counts are elevated in liver function tests
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