I have ET my platelets are usually between 650 and 800, I dont take any meds apart from aspirin 75mg

[treebeard]

do any of you,take other meds on this platelet level, i am 64.

[Hidden]

My platelets fluctuated between 650 and 900 during the time I was being diagnosed last year. I currently take 12 Hu a week and aspirin 75mg to control symptoms, If I didn't have symptoms I wouldn't take the HU but without the meds I have no quality of life. They were the reason I presented to my GP, as I never went to the docs normally. I am 53 yr old female.

[treebeard in reply to Hidden]

What is Hu

[Hidden in reply to treebeard]

Apologies Hu is short for Hydroxycarbamide also known as Hydroxyurea.

[rubyrubyruby]

My platelets are 810 and I was diagnosed jan 2012. At the moment I am on only aspirin.

[jeanr in reply to rubyrubyruby]

My platelets are around the same level but i've been told I need to get down below 600 - it may be because of my age I just turned -70? Has your Dr suggested you need to go on anything other than aspirin?

I've just been diagnosed so I'm on a fast learning curve. Thanks.

[Mwalimu]

I am 70, overweight which is probably relevant and was diagnosed with ET in Aug 2011 with platelets just under 800. Was immediately put on 500 mg hydroxycarbamide and 75 mg asprin daily. This has brought down the count to 290 (June 2012). My two previous haematologists (Hospital still hasn't made a permanent appointment) did not respond well to either discussion of possible symptoms or possibility of reducing medication. However, on the last visit I met the 'locum to the locum' who has allowed me to try this provided I have a follow-up blood test after 2 weeks. Am now exercising, eating sensibly which includes pomegranate and red onions and waiting for the test. I hate the idea of the hydroxycarbamide but think that, when first diagnosed, it gave me a feeling of security. Now I just want to try to control the platelets with minimal dependence on it.

Good luck with finding the treatment that is right for you ... Mpdoice has made me aware of the importance of being pro-active in treatment . I feel this is especially important when the haematologist is old rather than more recently - trained. I think it's significant that the only person who really tried to answer my concerns was young - locum to the locum or not!

[Hidden in reply to Mwalimu]

Not sure that weight is relevant, I am a size 10/12.

[Johnj in reply to Mwalimu]

I have been on Hydroxycarbamide for over 14 years,and I find it controls my blood count pretty good. For several years my doze has been 2gms to 2.5gms daily and apart from lowering my wcc and nuetraphils they have worked well. To counteract drop in white cells and neutraphils I am now on 1.0mg hyd + 0.5mg Anegralide one day and 1.5mg hyd +0.5mg Anegrelide next day. I don't take aspirin. The latest combination is working well. If you are only on 0.5gm hyd. I think your doing well.. Iam

74.

[Mwalimu]

It may explain why they put me straight onto the 500 Hydroxycarbamide - they thought I was a high risk. Oh, to be 10/12 !!

[BlessedWithSix]

Mallard and others, what were your symptoms?

I keep reading all the posts but feel I'm getting confused.

I can't tell the difference between symptoms and side effects.

[Blu-6 in reply to BlessedWithSix]

I am a 77 year young female who was diagnosed with ET last year when my platelets were at 600 and I had experienced a minor TIA (didn't really know I had it and experienced no deficits). They immediately put me on HU at 500mg/day (I was already on Pradaxa-an anticoagulant, because of the TIA). Two weeks later my platelets came down a bit, not fast enough for the doc so she increased to 1G/day. The only symptom of ET I had was fatigue, which I noticed because that had never been a problem for me. Since taking HU, however, it has disrupted my good sleep patterns and I do have some aches in my hips/legs but not anything disabling. I do not intend to stay on HU for the rest of my life. I'm following an anti-cancer diet, taking appropriate supplements, practicing QiGong healing and meditation, and at my next appointment, I'm going to request an MPN specialist - we'll see what Kaiser (I'm in the US) has to say about that! To answer your original question - symptoms are things you're experience from the ET and side effects are what you're experiencing from the medications you take. Hope that helps. All the best to you.

[BlessedWithSix]

I was under the impression that the only symptoms were to throw a clot or hemmorage.

[Hidden]

I suffered with tirdness and Iooked dreadful, everyday was an effort and working full time was a nightmare. I was going to bed when I got home from work during the week and at weekends in the afternoon for a couple of hours. I lost my zest for life. I got blurred vision regularly and silent migraines at least once a week (thats no headaches but lots of zig zag lines in front of my vision) and as I work on a PC most of the time I couldn't see the screen. Tearing itchy skin, night sweats, sore throbbing toes, and a feeling like I wasn't really here, I just couldn't think straight, it was awful, I suffered this on and off for months, I just kept swallowing paracetamol like it was going out of fashion. I actually thought I was going through a really bad menopause and went to see if I could get HRT, instead I came away with ET. I still get slightly tired on the Hu but more or less straight away all of the other symptoms disappeared and I started to feel normal, making me realise I hadn't been well for a very long time. I was also confirmed Jak+ and my spleen was slightly enlarged.

[DeniseC in reply to Hidden]

Your symptoms were very much like mine and I also thought I was going through an early menopause, but came away with ET, not Jak+ though. I was put on Hu too and thankfully a lot of the symptoms went. I still get very tired working full time and when when the fatigue hits and all my joints really hurt its a bit of a nightmare, but as things have improved so much from what they were I'm just very thankfully. My levels were 1500+ when diagnosed but now down to 251 so the Hu is working.

[ballycool]

I was diagnosed with ET in August 2010 after having a blood test taken which showed my platelets at 1700. Over the next three days they rose again to 1900 at which time I was put on Hydroxycarbamide, 2 per day and Aspirin 75mg. I had a bone marrow biopsy which showed fibrous tissue in my bone marrow and I have been on Hydroxi since at various levels, the lowest dose was 1 per day however, my platelets started to rise again and I have been on 2 per day for the last 6 months. My platelets, at the last count were 251 the lowest they have ever been. I next see the haematologist in August so maybe I will have a reduction again in the Hydroxi. I take the advice given as I don't want to risk increasing the fibrous tissue in my bone marrow. I hope you get the correct advice as platelets can spiral out of control pretty quickly. Hope you keep well and manage to have a good quality of life.

[piggie50]

Hi, I am 58 and have had PRV for 7 years. My platelet levels are similar to yours. I have been taking 75 mg aspirin a day since diagnosis with occasional venesections. I have resisted hydroxy so far. My haem wanted to put me on it 4 years ago. He says that with each decade the threat of thrombosis increases so I have said that I will discuss it again when I am 60! I dont want to take anything unless it is essential. Of course I would rather take it than have a stroke, but am keeping an open mind. You also have to remember that platelet levels increase with infection in the body, so even having a cold can cause an increase. I also work full time and have 5 grandchildren, yes I get tired but my life has not changed drastically. it is not all doom and gloom! Think positive!

[Flaxy]

I too am 58, diagnosed with ET a few months ago, high platelet count (860) picked up during routine blood test last year. I am only taking aspirin, platelets have been consistantly between 800-860, consultant has said that I will go on to HU at 60, as at that age we are catergorised high risk. As this seems a bit arbitrary, would it be reasonable to question this and stay on aspirin alone or is it better to add the HU. I currently have no symptoms, no weight or fitness issues and no family history of stroke?

[graymare in reply to Flaxy]

I was diagnosed at age 53 with ET, platelet count 600-700. I stayed on aspirin till age 71 when the count rose to 1300. I'm now on Interferon. I also had no weight or fitness issues and no family history of stroke, so decided that the side effects from the medication were worse than the disease. The interferon has brought my platelet count down to 250 and I have never regretted those extra years on aspirin alone. We are all different, but I agree everything about ET does seem arbitrary, tho' I'm sure our haems do the best they can with not too much research, no cure etc. to go on and all the different patient reactions to the few drugs there are. What did you decide to do?

[Mooshie61 in reply to Flaxy]

I am 62, diagnosed a year and a half ago. I have chosen to do aspirin as my only symptoms were headaches. The aspirin has stopped the headaches. No other issues. Ideal weight etc. I feel like this is a good decision for me but I do occasionally wonder if I’m making the right one.

[Mooshie61 in reply to Mooshie61]

My platelets are around 770. I think if they get much higher I’d like try interferon as well.

[lynnieb]

my platelets are high at the moment. What symptoms does anyone have? I've started on aspirin, but my consultant doesn't know yet what medication to give me until my bone marrow biopsy redults are back. Thanks

[Mjbell]

Yes,I take Hydroxide a. It is an oral Chemotherapy. I have E.T. Good luck.