Platelets 1200 - No Action to be taken?

[Arb411]

ET Patient diagnosed 23 years ago, now age 46. Tried Hydroxy, Interferon, and other drugs, without long term success, due to side effects. Now in a situation where Platelet count is 1200 and potentially rising. Now only taking Aspirin. Feeling vulnerable as I am now being told no other options and should be taking no further action. As ever looking for positivity, any help or guidance would be appreciated.

[Chris_H]

Morning! I'm not really in the position to comment on your situation or ET (have PV myself and meds tend to work for me), but have you investigated diet and what you consume?

[hall2]

Sorry to hear about your situation. Were the side effects for interferon and hydroxy totally unbearable and how long ago were you on each? Could you give the one that caused side effects another go? If you are in UK could you ask for a referral to an MPN specialist? There is a lady at Guys in London who is a real expert on these conditions?

[Ebot]

Hi. I’m assuming that you have other health issues or episodes (history of TIAs etc) that have compromised your prognosis. For anyone with straightforward ET under the age of 60 and with platelets of less than 1500 aspirin only and monitoring is the usual approach. The understanding, management and treatment of MPNs has changed exponentially over the past couple of decades. As hall2 asks, are you with an MPN specialist - such as the team at Guy’s? And is it worth reviewing the meds? Might you benefit from an MPN buddy (via MPN Voice) in a similar situation? Wishing you all the best.

[Arb411]

Thank you so much for your responses. Yes, we are looked after by the incredible team you mentioned, no other Tia's etc (Lucky, I know!) Has anyone ever sought second opinions or looked at drugs they are using in US? Interferon & Droxy, not an option. Difficult to believe that after being told for all the years that medication is a must and taken Chemo for that long to now be told you can live perfectly fine without anything? Whats changed so much for this to now be the case. We are going back to clarify this just so interesting and reassuring to get your comments. Thank you x

[Jenny_F]

I am around the same age as you and am only on aspirin. My treatment plan is to stay that way until I hit 1500 before review. I also tried clopidigrel but I knew it wasn't working as my blood was clotting too quickly so went back to aspirin. I would also ask what trial drugs are out there if you are worried but as long as you are fairly active and lead a healthy lifestyle, and drink plenty of water, then I wouldn't worry too much about being on aspirin for now.

[Arb411 in reply to Jenny_F]

Thank you Jenny

[Spirit123]

I think the side effects from the drugs are worth it to keep my platelets down. I have had ET for a number of years. I take hydroxy and get on with life as best as I can. Keep active is best.

[Hidden]

I have PV and my platelets are high too, over 1000 up and down a few each testing. Could not take hydroxurea because if side effects and no interferon.

So my hematologist put me on Jakafi (ruxolitinib) and it is helping.

After working to get the dosage right and side effects lessened.

To add, i take a daily baby aspirin and when my platelets are 900 and above, I get migraine auras, brain fog and just do not feel good.

A good Dr. who will listen and act us a must no matter how many you have to see to find him/her.

Good luck.

[Cja1956 in reply to Hidden]

I have PV,as well. My hemo has me on 1000 mg hydroxy, 20 mg jakafi and one baby aspirin. After being on this site for a couple of months, I feel like I’m being overmedicated. My platelets have never been over 850,000. Any comments?

[Hidden in reply to Cja1956]

My platelets were the highest among all of my counts and I could not take hydroxyurea.

The hyroxy did nothing for my itching and i had small sores around my ankles and that was after a few days on it.

The Jakafi alone reduces all of my counts as long as the dose is correct.

Talk with your Dr. about your concerns.

Good luck.

[Cja1956 in reply to Hidden]

Thanks.

[Cja1956]

I would be very skeptical about only being on aspirin. Sounds like you have a good team but it wouldn’t hurt to get a second opinion. It’s true that the side effects of the medication can be debilitating but not keeping platelets under control can have other consequences.

I wish you the best.

[Hidden in reply to Cja1956]

Yes, I agree!

[hunter5582]

There is some thinking now that leukocytosis + thrombocytosis places you at greater risk for thrombosis than thrombocytosis alone. Some evidence that erythrocytosis is also an increased risk factor. You indicate that your diagnosis is ET, so assuming the other blood numbers look OK. At 1200, you might want to have your von Willebrand factor checked. After years of concern about clotting, I am now being assessed for possible Acquired von Willbrand Disease - more likely to bleed than clot. Go figure.

[katiewalsh]

Hi. Sorry you have to be worrying about this on top of everything else. If your team includes Dr Claire Harrison (I think that’s her last name) I doubt you’ll find anyone better. I’m in the US & the UK people on this site think she’s top & I see her name as a contributor to major research. If that’s not who you see you might want to. If it is who you see I’d suggest that you talk to her and express your concerns. Yes, you could get a second opinion but will that person be as good as Claire? And give you the best treatment plan given all your factors? Hope you get the answers you’re looking for. It must be hard. Katie

[Wyebird]

What about anagrelide also if you have side affects from that Oakes with another. I’m on hydroxi and anagrelide. Failing that are you seeing an mpn specialist? If not maybe seek a second opinion with one. Good luck

[Anag]

I don’t agree with Ebot. Every patient is different. Some have no episodes until 1500. I had my 3rd TIA when at 823 thrombos. I was finally diagnosed that day. My 1st TIA was at 550! Everyone is just different. 1500 is high. Then again, if you’ve never had any thrombotic episodes, Aspirin May still be enough. It’s not for me, though. I was put on Anagrelid immediately. Unfortunately, my heart was thumping strongly 2 hours after taking it. Because I am born anemic and therefore cannot be considered for Hydroxyurea and since I have Hashimoto, can’t use Interfuron either, I myself experimented with Anagrelid. Instead of taking the Anagrelid, (two 0,5mg capsules in the morning and two at night. I spread them out: 7am, 12:00pm, 5pm and 10:30pm. The problems stopped. If you need to try the meds, rethink how and when you take them and perhaps adjusting the dosage better. Worth a try. We try to keep my thrombos at around 500-600. Hope this helped.