Hi, I am undergoing tests on my heart and have been diagnosed with pulmonary hypertension. The tests are not yet complete so I shall continue on 20 mg Rux and aspirin until they are. My haemotologist thinks it has not been caused by the Rux but maybe PV.I would like to hear from anybody else who has had a similar experience, either on Rux and developed heart issues or who has an MPN and also have heart issues either taking meds or not.
Thank you
as far as I hear PH can be a MPN thing but never heard it being Rux associated, I’ve been on high dose Rux for PV for 7 years
I have had both PV and an arrhythmia. The hyperviscosity of the blood caused hypertension for me. When the blood thickness was reduced, the blood pressure reduced. There is no question that hyperviscosity caused by PV would be a problem that would complicate pulmonary hypertension regardless of what caused it. Keeping your HCT at target with RUX or some other intervention is extremely important.
As ainslie noted, I never seen pulmonary hypertension as a ruxolitinib adverse effect. I would expect that RUX would help the situation.
Suggest that you review your concerns with your care team who can give the best explanation of how hyperviscosity impacts pulmonary hypertension.
Thank you Hunter, I don't think hyper viscosity is an issue for me as my HCT is low at 0.34 and has been since being on meds, 4 years. All my counts are low except platelets which are between 400 - 500. My oxygen saturation is only 93 which is likely contributing to my problems.All the information I am gathering indicates you are right that Rux probably not the cause. Both my haematologist and cardiologist think it's secondary to the PV as they have both seen PV patients with pulmonary hypertension. I still always like to get input from fellow patients for reassurance.
I am still undergoing heart tests so my next step is to get the full picture.
Probably be back picking brains in the near future.
Thank you.
Glad to hear that the erythrocytosis is well controlled. It would be a significant risk factor with pulmonary hypertension. Are the docs thinking that the PV contributed to the PH prior to the PV being treated? It sounds like your cardio team is doing the assessment to figure out exactly what is going on. You should have answers soon.
Please do let us know what you learn and how you get on.
