I have PV and the JAK 2 mutation. I been taking low dose aspirin and having phlebotomies for the last 5 years. I recently tried Hydroxyurea but had bad side effects. After a month, I stopped taking it. Now my Dr. has me on Anagrelide for the High Platelets and continuing the phlebotomies. However, my Dr. says I probably will need to go back on the Hydroxyurea for the rest of my life. I am in my late 60's and worry about my how these drugs change your life. Guess anything is better than having a blood clot or a stroke.
Any comments will be appreciated!
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I started Pegasys at age 69 and am doing well. The notion that interferon is for younger people seems strange to me. It is easier to handle the side effects if you don't have to work.
Thank you for your response charl17! Isn't interferon a daily or weekly shot. My oncologist mentioned that. What were you taking before the Pegasys and how long have you had the PV or Thrombocythemia? Did you take the Hydro first and did you have side effects.
Pegasys stays in the body for a week. Diagnosed in 2014 with primary fibrosis, I started HU to control my platelets and white cells. A year ago I developed an ankle ulcer that would not heal. The HU made me sleepy during the day. If you want to know more you can get the story by reading my replies. They should be accessible.
Thank you! I definitely will as I am learning more and more from friends on this website...knowledge is everything (almost)!!! The support is tremendous!
In New Zealand we have the old regular interferon alpha 2a which is injected 3 times per week. Pegasys is longer acting and only injected once a week with less of the flu like symptoms of regular. If you can tolerate the anagrelide, stay on it but if you develop heart pulpitations go back to your doctor & you'll possibly need to change your meds. It works very well for platelets.
If you cannot tolerate hydroxy don't go back on it, we should not have to tolerate another symptom burden on top of everything else. I got to the stage it was too painful to even walk.
Yes, in most cases we will all need to take our meds for the rest of our lives 😭
Hello fee13, thank you for the comforting email!! All these drugs are bad with side effects. I have only been only the anagrelide 3 days and it is making my heart race like a race horse. I took at night the first time and I couldn't sleep. I got up at midnight and took my blood pressure.....I asked my Dr. and he said it is nothing to worry about. I honestly think I need a shrink to help me adjust to living with this illiness and the problems of the drugs. If it were cancer, you would take chemo and maybe be in remission for 5 years. This PV is chronic and the story only gets worse. Sorry if I sound like I am whining. I have learned to live your life and not put anything on hold.
I was diagnosed 5 years ago with ET & I still haven't been able to come to terms with it. I keep thinking of counseling but never get round to it.
I'm unsure if there is a "transitional" period with anagrelide where the heart settles eventually but if you know you already have heart problems it is advised not to take it as it exacerbates the condition, so if this is the case & your doctor won't acknowledge this then get a second opinion. Do you see a specialist/haematologist?
I had not heard of this drug before now but hopefully it will decrease the platelets and my heartbeat will settle down. As far as I know, my heart is ok. I had gone to a wonderful oncologist/hematologist for the last 5 years. He just retired so I am seeing a different one now. He is much younger but hopefully very up-to-date on these conditions. He did say I can not keep getting the phlebotomies forever because I eventually become anemic.
Hi there, reading your post with interest even though I have PV, not ET. I noticed your comment “If this was a cancer....”. Sorry my lovely but ET, PV etc., are all blood cancers. In 2008 the World Health Organization upgraded them from blood disorders to blood cancers BUT they can be well controlled and sufferers can live a close to normal life with the medications available.
Hi I too am in New Zealand in Napier where are you based I have ET and have just been put on hydrea which to me is really scary don’t know how I will respond great to have people to talk to in the same position I also have fibromyalgia so double whammy regards jackie
Jackie, make sure you join MPN New Zealand information and support on Facebook. At the moment they've got a post with all NZers listing where they're from, diagnosis, any mutations & what med's they take. I'm from Palmerston North & under the hospital haematology unit.
Hi there. I just wanted to pick up on two points you raise in your various posts here. First, I’m on HU and like the overwhelming majority of people face no side effects. For me it’s been a game changer and I feel I have re-entered the human race (more or less!!). If you find the HU is making you tired during the day (and some people do) then if you haven’t already tried, take it at night. Also some people find the HU takes a few weeks to settle in, particularly if you’re feeling stressed about the whole thing. Certainly lots of us will attest to the fact that that HU capsule can go from swallowing a ‘poison bomb’ to ‘smartie’ very quickly. Secondly, phlebotomies are in effect designed / aiming to make you anaemic. However the recent research indicates that they are not productive / advisable long term so I suspect increasing numbers of haems (as the knowledge filters through 😬) will be looking at other routes. All the best.
Thank you Ebot. So far the phlebotomies have not hurt me for 5 years but I am getting them more often...3 mos...2mos...1 mo....but I have been so tired and I blamed that on the HU....I took 500 the first two weeks and then up it to 1000 every other day....maybe that was too much to start with. I have a feeling I will be giving it another chance regardless of the side effects. I will try taking it at night!!
Yes, try taking the HU at night. Drink plenty (a couple of litres) of water each day. Probably best to ease off the water in the evening - unless you want to be up all night going to the loo! Be easy on yourself. Good luck.
Hi I’ve been on HU for the last 20 years, I’m 67 and do remember that in the first 6 months or so of taking it I used to feel quite a bit off but then seemed to get used to it
There are different thoughts about treatment for polycythemia. The "standard protocol" for PV-age>60 = hydroxyurea + aspirin + phlebotomy. The standard protocol is not necessarily the right choice for any one of us. HU is a toxic substance that not all can tolerate. Like you, I am also HU intolerant. I will not take it ever again. There are MPN expert docs who approach PV treatment differently. They look at the individual profile of each patient, look at what their actual symptom burden is like, then individualize the treatment plan for that patient. I was fortunate to have the opportunity to consult with one of these more specialized docs who has a very different take on MPN treatment based on his experience with hundreds of MPN cases.
There is significant emerging research regarding the role of JAK2+ and Inflammatory Cytokines, the wider prevalence of Acquired von Willebrand Disease symptoms at lower (800Ks) platelet levels (note risk of hemorrhage rather than thrombosis), and the importance of knowing your level of JAK2 Mutation allele burden (less than 50% = milder course). I firmly believe we all need docs who have the necessary experience with MPNs and stay on top of this emerging research.
I am JAK2+-PV. I am currently in recovery from a major surgery for a brain tumor. right before the surgery, the docs discovered I was severely iron deficient due to "over-phlebotomizing me". The surgery has put me into reactive thrombocytosis. Platelets made it back up into the 800Ks. Historically, when this happens, my von Willebrand factors tend to drop. I sent a note to the MPN expert doc. I think you will find his response (below) interesting.
RE: Post-surgery update
Message body: Dear Mr. S,
I am glad that your surgery went well. As best as I can tell from your chart, the mass was vascular in origin. With respect the treatment of your disease. Since you have it for so long, what see is what your going to have. Phlebotomy is the only necessary therapy. Aspirin is unnecessary unless you have symptoms that require it. A high platelet count doesn't cause thrombosis; it can cause bleeding. If your surgeon is concerned, this is easily testable. I certainly wouldn't take iron unless you want to keep getting extras phlebotomies. For polycythemia vera, chemotherapy is a fool's errand except in specific circumstances; if you need it for a tumor elsewhere, that is fine because it won't affect the polycythemia vera.
I certainly cannot say whether this advice is right for you, but I am sure it is right for me. I found the MPN expert doc on this list of patient-recommended providers mpnforum.com/list-hem./ . I would encourage you to seek consultation with a provider who truly has expertise in PV treatment. Most doctors, even hematologists, simply do not have the expertise we need. Finding the right doc could make a huge difference in your life and ability to manage the PV effectively.
Thank you Hunter5582 for sharing this!!! Yes I have been given the standard protocol. I recently had surgery for a poylp and kept failing the PTT as my blood was taking too long to clot. I was tested for Willebrand Disease which was negative, but I did test positive for the Lupus AC which they said was two strikes against me for my blood being way too thick. My Dr. was scared I could bleed out if I had surgery so it was put off for a couple of months...more blood tests. Finally outcome was it was a false positive if that makes sense. My platelets are 738 last week before my phlebotomy. I will definitely check with a MPN expert on this forum. Thank you again.
Sad to say many docs are just not as aware of these issues as we would like. There is more than this, but here is one recent link sciencedirect.com/science/a... .
Regarding risk of hemorrhage vs thrombosis - it all depends on your individual profile. Thrombocytes alone may trigger bleeding risk. Thrombocytosis in the presence of leukocytosis and/or erythrocytosis may increase your risk of thrombosis. JAK2 signaling overactivation may also more directly trigger risk of thrombosis. Now add to that - any other medical conditions you may have from hypertension to Lupus, and it is quite a puzzle to figure out. I firmly believe the answer for each of us has to be determined on a case-by-case basis and may change over time.
Regarding Acquired von Willebrand Disease, not only is it more common than thought, but its diagnosis is more subtle and complex than the congenital form. I had to do a lot of research to find the appropriate diagnostic protocol, which I provided to my regular hematologist and pushed to do. Unfortunately, my laptop crashed while I was in the hospital and I do not have the link to the research article. Below is a summary of that the assessment panel looks like. You do not necessarily do all of these - it is a sequence of if-then decisions that get made to determine what is needed. Not all labs do all of these tests.
a.Possible Acquired von Willebrand – current testing results? Ongoing assessment
i.Prothrombin – usually normal with aVW
ii.Activated prothrombin - normal does not exclude aVW
BTW - I do not appear to have Acquired von Willebrand, but I do get decreased vWF factors when my platelets go above 800K. I subjectively seem a bit more "bleedy" when this occurs, but the coagulation cascade is intact enough that I do not hemorrhage in a dangerous fashion. I think that this is actually a continuum where you may have alteration in platelet function without a level of risk that qualifies as a "disease."
I hope this all helps. All the best to you on this journey.
Hello Hunter, thank you for all the informative information!
Since coming off the Hydroxyurea, my oncologist put me on Anagrelide twice daily. I have continued my nightly low dose aspirin and phlebotomies. After having two phlebotomies in June and only one in July, my platelets did go down from 736 to 638 which is good. I have been told this drug was not as effective as the Hydro, but it is not a chemo drug. The side effects of the Anagrelide have been a very fast heartbeat, diarrhea, skin sensitivity to the sun, fatigue and a UTI infection. This hopefully will level out and I will be ok as long as I do the phlebotomies,
I am finding that my journey is a day by day transition but keeping a positive attitude!!
I stopped taking the Anagrelide this April and started taking Jakafi 15 mg twice daily. In July I had multiples PE's in my right lung. Immediately my Dr. put me on Eliquis 5 mg twice daily for blood clots. It seems like I have gotten worse...the fatigue is terrible and I just want to sleep. Don't know if this is a side effect from medication or from the PV itself. I have also developed a shortness of breath and get winded so easily but going to a Pulmonary Dr. tomorrow.
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