Lately, or perhaps I should have said, more recently while cycling... I have noticed days when my heart rate really blows out past previous maximums... Some days, I would feel in awesome ability after a ride, but then others, (& more commonly), I began to find myself struggling more than my usual, caused by my anemia alone etc...
Hence, I decided to do a tad more digging into my condition, and perhaps some of the observations noted by others for those of us being treated by a JAK Inhibitor, like Ruxolitinib... (JAKAFI)
It appears that they have known for sometime Pulmonary Hypertension (PH), appears on treatment w/ JAK Inhibitors, or is it more simply another aspect of having MF?
HiI saw my doc last week and he mentioned that MF & pulmonary Hypertension seem to be linked or there’s a higher risk. I’m on HU. But I also know I’ve had a doctor say he thinks my earlier, & milder Pulmonary Hypertension stemmed from all the PE’s I had in my lungs. Not sure if any of this helps. But tell me please what made you look at Pulmonary Hypertension as a possible cause for your increased heart rate? That’s what I’ve been experiencing with simple daily activity. Katie
I stumbled upon a related article for sufferers of CML, that spoke of Kinase Inhibitors (KIs) being linked to PH, and Ruxolitinib is one type of KI...
The References I provided earlier do explain in greater depth Katie. Ruxolitinib is also known to cause weight gains, and gains in cholesterol... Whenever I stop cycling for any reason at all... the kgs come and find me again swiftly... That's another reason why diet and 'Intermittent Fasting become so vitally important too, in my view...
Stay safe & well, and best wishes for the festive season to you & yours Katie...
I have been assesses for pulmonary hypertension due to an anomaly that appeared on one of my MRIs in some of my pulmonary plumbing. The pulmonologist assessed me and felt pulmonary hypertension was not present. He did not feel it necessary to do the cardiac catheterization measurement of pressure in the pulmonic artery. It is known that the NF1 mutation I also have can cause issues, but it does not seem to be the case for me. The main point is that the docs can assess for pulmonic hypertension and give you a clear answer.
You may also recall that I also had paroxysmal atrial tachycardia. This arrhythmia is not directly linked to the JAK2 or NF1 mutation, but there is a family hx on my Mother's side of the family. I opted for the surgery since I did not tolerate the calcium channel blocker very well. Likewise need to avoid beta blockers. The surgery was successful, but I do still occasionally have low grade sinus tachycardia. Stress is certainly a trigger, but sometimes it is just out of the blue. Have no idea why you are experiencing what sounds like some form of tachycardia, but it is certainly something to figure out.
FYI - by cardiologist recommended that I keep a Kardia heart rate monitor on hand to monitor my tachycardia when it happens. There is a newer version of the device that came out that is now a 6-lead instead of the older 1-lead version.
I can run my own EKG, print hard copy and or email the results. I always share any results with my cardiologist and GP. This is a time where more data is good data.
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