My best wishes for a happy and healthier New Year to all you amazing and insperational people on this group!
I wanted to ask if anybody else might have had the same issues that I am having.
I have ET Jak2, now with PV as well.
I took Interferon for the very first time a few months ago and ended up in the hospital 48 hours later with very high blood pressure, chest pains and shortness of breath.
We tried reducing the dose over the months that followed, but my body didn't tolerate it well.
I had to go on Hydrea. Checked with an MPN specialist. He confirmed it was the best option for me at the time.
It started well. My platelets went from 960 to 330 in 1 month. I have been on it for 2 months now.
However, I am having chest pains and shortness of breath. My blood pressure (especially diastolic) was high.
I saw a cardiologist, who has put me on Perenodril/ indapamide to get the blood pressure under control and I have a stress test scheduled. The blood pressure medication seems to work.
But the chest pains are still there (and seem to be getting worse). I have a hard time sleeping, as it hurts if I sleep on my sides.
Nobody seems to know if the issues are with my lungs or my heart.
I have an appointment to scan my lungs as well.
I am trying to take it easy until then, as I don't understand these pains.
I didn't have any of these issues before I started my treatment.
Has anybody else had a similar experience ?
Thank you very much
Written by
JustKeepSw1mming
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Sorry to hear that your ET progressed to PV. The same thing happened to me. One of the issues the PV caused was an elevation in blood pressure due to the erythrocytosis. This makes the blood too viscous, elevating BP. You noted your platelet levels but not your HCT, which most use to monitor their PV status. What I found is that once the erythrocytosis was controlled (HCT<45%) my BP returned to normal. It is worth noting that with PV it is the erythrocytosis that poses the greatest risk of thrombosis. That is why the primary treatment goal is HCT<45% for males, and HCT<42/43% for females.
I have also had a history of significant chest pain that at times mimicked a cardiac condition. Just to make things more confusion, I did also have an arrythmia, The chest pains were actually acid reflux causing esophagitis. One of the things the docs told me was that long-term chronic chest pain that does not result in a heart attack is usually acid reflux. Acute chest pain that is the result of a cardiac issue is usually a pretty clear diagnosis. Note that the position I slept in at night made a big difference. This is not to say this is the issue for you but suggest adding it to the list of things to check out.
As you already know, the issues with shortness of breath could be adverse reactions to the medications you have tried. The timing is certainly suggestive. That is not, however, conclusive. If it turns out that you are intolerant of both Pegasys and hydroxyurea, there are still other options like Jakafi to try for treating the PV. This is an issue to review with the MPN Specialist for the best advice.
The only thing I can add to Hunter's comprehensive reply is that when I have indigestion, it can feel like an ice pick is being shoved into my heart. Generally it goes away when I burp but will also take Pepcid AC. Also. given your history perhaps you are also experiencing an anxiety attack. Good luck with figuring this out.
That is very intetesting, I wouldn't have thought of acid reflux. I have noticed that the pain gets worse if I breath in cold air outside though, so I suspect it might be more to do with my lungs.
My HMC is at 42 now (was at 49 before I started treatment).
I am having my lung scan this week. So, hopefully, will know more.
Glad to hear that you are getting your blood pressure under control. Interferons can contribute to a rise in BP. I had a similar situation happen to me after starting Besremi. I currently remain on Besremi ,but at a lower dose. I did have to titrate up on my BP medications and may even need to add one if my BP numbers do not stay below 130/80. Chest pain was not an issue, and as Hunter said, may be contributed to acid reflux. Has an echocardiogram been ordered? It is helpful to cover this aspect as well. Are you near a major academic center? My MPN specialist recommended a cardio-oncologist( part of the center) and I recently had my first visit. I am very pleased to know that I am under the care of a physician that it well versed in both MPNs and cardiac issues. I would recommend looking into whether you can find one in your area. I am also on an anticoagulant (Xarelto) due to a history of atrial fibrillation. You may want to ask if this is an option for you if there is a concern for thrombosis. Take one day at a time. You will get the answers you need. Wishing you relief from symptoms and worry. I am happy to find this forum, as it helps to know that we are all dealing with the situations MPNs "throw at us" and working through them. Good luck and take care!
I did have an ECG. The cardiologist told me it was borderline normal and ordered a BP and a stress test.
It is very interesting to know that there is a cardio-oncologist. They might have a better view of both issues. During my first consultation, my cardiologist told me I had to lower my blood pressure by trying to do more cardio and push through it to challenge my heart. I am always keen to excersice, but since I started my treatment, I am just greatfull to be able to walk slowly without having to stop from being out of breath.
I asked him if "pushing" through not feeling well for cardio was a good idea, while I am on Hydrea. He acknowlegded, that he couldn't comment about my blood situation/treatment.
Keeping my fingers crossed I will get more answers soon.
I wonder what your dossage is for HU? I have been taking 600mg/day for 5 yrs, and it has generally reduced my platelets and recently to the normal range, without significant side effects except fatigue. I have PMF, JAK2, and I'm 77. No splenomegaly or constitutional symptoms besides fatigue. I exercise most days, and follow a non-inflammatory diet; as well as weekly psychotherapy and massage to help reduce bodily inflammation.
I started with a 1000 a day. After a month my platellets reduced so much, that my hematologist agreed to let me reduce it to 500 a day. Waiting for my next blood test to see if there will be any diffirence.
I am JAK2+ and have PV. I’ve had symptoms for 8 years but only recently diagnosed and started Hydrea 4 months ago and also have had 4 venesections. I have suffered from hypertension for last 6 years and also have stage 3 CKD.
This past month I have become breathless with exertion and have also had chest pain. I had an ECG last week which shows possible coronary ischemia. I have also gained 10 lbs in weight.
Feeling quite sorry for myself as I don’t know which of these medical conditions were caused by as each can have a knock on effect to cause the other!
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