Hi all...I m not sure why it took me so long to come to this forum. I am 52 and was diagnosed with Et Jak 2 negative back in 2010 with a platelet count of 2.3 million. Due to my high counts and the fact that I had been suffering with headaches and a couple of migraines, the hematologists felt I should be treated with Hydrea. I live a pretty healthy lifestyle, lots of exercise and yoga and I quit drinking alcohol when I started taking the meds as I figured my liver was getting enough stress from the meds!
I have had to take a fairly high dose of Hydrea to keep my platelets down, typically 3 x 500 mg per day. Recently my platelets climbed up to almost a million and I had to take 4 x 500mg per day for a month. It knocked all my counts down including my WBC, RBC and Neutrophils. I’m off Hydrea now to let my counts stabilize and I will get another FBC next week to see what’s happening. I have been very fortunate that I haven’t really had any negative side effects from Hydrea other than hair thinning and some fatigue, which could also be related to age...Lol.!
I just wanted to check in and say hi and maybe be of help to anyone else that has been coping with this weird disorder. 😊
*UPDATE... so I had my FBC this week and my platelets jumped from 270 to 735 in one week off of HU. So I’m back on 1500mg per day for another week to get them back down. I will do another FBC next week to see if I can adjust the dosage.
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lunasurf
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Hi lunasurf, nice to hear from a fellow sufferer, I'm male 56 with pv. I must say I've been reading posts for a few years and your platelets are the highest I've read about. No wonder they put you on a high dose of hydroxy, I only take 1 a day. All the best to you and hope you get good advice.
Thanks John..yes they were pretty crazy high. My doc was shocked I was able to function with platelets at that level without suffering from a stroke. I understand that when levels get that high, you can be just as prone to bleeding issues as you are to stroke or clots. Fortunately, I didn’t have either!
Hi SammieLou...yes they were pretty crazy high! Not sure the docs had seen it either,,,glad to hear you are able to manage with just aspirin, that’s great😊
Wow high nos! I am ET on two HU a day only slight drop after 7 weeks from 1200 to 920. I suspect my dose may be increased again if the numbers don’t move. The variation in our responses to these meds is interesting. Keep us posted please
Hi Dovme...I found that my HU dosage has varied quite a bit over the past 10 years as have my platelets. My platelets have gone as low as 250. (Currently) and have swung back up over a million. I guess that’s why it’s so important to have our bloods checked fairly often. When my counts are in a good range, which for me honestly is 500-600, I can go as long as four months without seeing the hematologist. When they get too high, I have to check in every month. It’s an ongoing thing and I find the best thing for me has been to stay positive and not get too upset when I have to change my dosage.
Hi, not good this is it but this site is certainly helpful, I have even had some ideas how to speak with my consultant with the aid of this site. It seems your medics have a good hold on your case so that is excellent. Hope all turns out ok for you, sure it will.
Welcome to our rather exclusive little MPN Club...
Sounds like you have already made the right lifestyle choices, which I also found helps me stay reasonably fit w/ my cycling & fitness regime too...
My name is Steve, from the wonderful 'Land of Oz'. I've never met anyone from Barbados before... Hi ...
Yes, I have to agree that I have never heard of someone w/ such high platelets, (2.3M). Mine were 1.7M when I was diagnosed in 2016, and they did cause me to have two (2) TIAs, (minor brain strokes), absolutely better not to go there of course...
These days, my Platelet regime is still quite high (800-900s), and at times does spike over the Million mark, and I try yet another method to try to reduce them etc... I have had some small successes at times...
HU was not so kind to me when I was first taking it... However, as I progressed to MF, I felt like my life was given back, when I started Ruxolitinib (Jakafi). Certainly helped across most of my symptom burden, and I have a much better Quality of Life (QoL), today & prior to Jakafi...
In my view, hair thinning & fatigue can both be caused by either the HU, and the ET as well... Fatigue can be such a drag at times... I just keep trying to push through it, and not w/out some success...
Anyways, stay positive and stay safe, and stay in touch & let us know how you get on w/ your next bloods etc...
Welcome to the forum. Hi back!😃 And YIKES to the platelets! Did they ever check for the other driver (CALR. MPL) and non-driver (ASXL1, TP53, etc) mutations?
Glad to hear the coarse of HU went OK, but that is a rather high dose. Long-term use of HU, especially under age 60/65 may present with some issues. Did the docs discuss PEGylated Interferon with you?
To answer your other question -- I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. It may have been masked PV for quite some time. My platelets have never crept up above 1 million, I have never had any thrombosis, and until recently had a very indolent MPN. I did develop hyper-viscosity and stage 1 hypertension, which got better when the RBCs were under control. I have always had more trouble with the systemic inflammation that accompanies the JAK2 mutation: osteoarthritis, plantar fascitis, GERD, insomnia, eczema, etc. Recently, I have developed ocular migraine and possible silent migraine (which may be aggravating an area of my brain where I had surgery). I also have Neurofibromatosis Type 1, which is another kinase-based disorder. Having both the NF1 mutation and JAK2 mutation do interact, but it is not well understood. The database is just too small.
Hope you get answers and options ASAP. Glad you have joined us here.
Wow, that’s quite a journey you have had! You sound as though you have quite an extensive knowledge of all the genes associated with MPNs. I confess, I felt rather overwhelmed by all the information available when I was first diagnosed. I’m not sure which gene markers I was tested for back in 2010 besides the Jak2. I know I had genetic testing to rule out CML as the docs suspected that as well when I first presented.
I have been very fortunate that HU has worked very well for me for the most part. I suppose it’s possible that I am developing a resistance as it does seem to take a higher dose to keep my platelets down. I will admit that since COVID, I have not been as careful with my nutrition and I know that when I follow an anti inflammatory diet, it is much easier to keep my platelets down with a lower dose of HU. I also started taking quite a lot of supplements to boost my immunity and I wonder if those also played a part in the increased levels? My doc has suggested that I may have to consider Interferon as an option for the future...not sure if we have the PEGylated form here in Barbados?
I have stopped all my supplements and HU for now and I will see where the counts are this week...I’d love to have a longer break from the meds, but I guess I will have to see how quickly the platelet levels bounce back.
Thank you for sharing your story and all the helpful info!
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