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Jak2+ Thrombocytosis

Hi All,

Thanks for all the encouraging words since my recent diagnosis. I am wondering if anyone knows the purpose of taking drugs to lower platelets. I am wondering if you want them lowered to reduce the co-morbidity of things such as Tia's, stroke, heart attacks, or DVT's. Or, does lowering platelets have an effect on the long term prognosis of the disease, that is does it slow the progression of the disease and does it long term lower the chances of it turning or morphing into something else such as MF, PV or leukemia. My platelets have been between 450-550, now in the 475 range, I hesitate to start taking HU until I have to, I have no symptoms that I am aware of and my hematologist says that if they go over 500 again that I should take the HU.

Hate to start taking a drug that will have to take for life and has side effects until I have to do it. Anyone have bad side effects from HU such as hair loss, nausea, diarrhea, tiredness?

Thank you in advance for any advice you can share.

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Hi Meatloaf, have taken Hydroxy for nearly five years and for me it has been alright no side effects like hair loss, nausea, diarrhoea, in fact I have never felt so well it has really helped me. The trouble is if you get an upset stomach it is to easy to blame the drug, but in my case I think I am lucky as a lot of drugs really do upset me especially statins which made my life hell till I stopped taking, and it took a long time to get out of my system, yet other people swear by them, everyone is different I guess but I would rather take a drug that is controlling my platelets with minimal side effects and to be able to live a normal life again.

I did change my diet to lots more fruit and veg plus drinking loads of water making sure everything is flushed through, plus my skin has improved not so dry anymore due to the water intake and the change in diet. Plus I do lots of exercise.

OK I was frightened when I first had to start taking it, but once they got my levels under control its now a breeze and my attitude is if it works don’t mess with it, take 500mg daily and 1000 Sat and Sun.

For me they are alright, no side effects, just treat like any other tablet I take daily.

Jean

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Thank you again

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Hi, as I understand it we take HU primarily to reduce the risk of stroke/blood clots, but there is some evidence that it may slow down the rate of fibrosis of bone marrow.

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Hi Jane that’s interesting. I didn’t know there was a possibility H can slow down MF.

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Thank you

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Hi, Meatloaf

I posted a reply a few weeks ago addressing a letter very similar to yours. Just search hydroxicarbomide side affects.

Right now though you need reassurance.

Firstly, I had a stroke 10 years prior to diagnosis. ( not relatated). I almost fully recovered. ( weak neck) I was one of the lucky ones. The thought of having another terrifies me more than anything so I take hydroxicarbomide to lower my platelets and reduce that risk. Too many palatelets make your blood too thick and puts you at risk of having a blood clot resulting in a stroke.

Secondly, if I can keep my platelets below 400 I have a far better quality of life.

Some people have side affects. I have less hair but no one else apart from my hairdresser knows.

Only you can make the final decision.

For me seeing people on a stroke ward severely disabled was a reason enough to take hydroxicarbomide.

Best wishes

Wyebird CALR ET.

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Hi,

I was similar to you with a platelet count of 500 at diagnosis. Like me, you will be considered ‘high risk’ based on age alone, which is 60 years or over.

I didn’t want to start treatment - because I felt well and had no significant symptoms or other health conditions. I did encounter scintillating scotoma from time to time - still unsure if this was related to ET though. The haematologist explained the risk of heart attack/strokes and highlighted the disability often encountered with the latter. That was enough for me to take her advice. Disability frightened me more than death!

The platelets that derive from the mutated jak 2 gene are immature, odd in shape and have a propensity to stickiness. Aspirin will help with the stickiness.

The way I view it is, if you can imagine your arteries, veins and capillaries as a road network, some roads (capillaries) are narrower etc. If you can free up the congestion (excess platelets) by treatment with HU. There is less likelihood of a crash (cardiovascular event).

I have no problems with HU. I’m so grateful that there is such a drug that has the effect that it does. It is also tolerated well in most people. Like Jane said, there is some evidence that it may slow the rate of fibrosis too.

Mary x

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Thank you again

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Hi Meatloaf, we can completely understand your concerns about starting Hydroxycarbamide, we've all been there. The purpose of Hydroxycarbamide is: Blood cells originate from stem cells. Stem cells are master cells which divide and mature into the different types of bloods cells: red blood cells, white blood cells and platelets. The marrow in our bones acts as a factory for the division and maturation of the stem cells into blood cells. Each new blood cell contains DNA which carries all the instructions the cells needs to grow and function. Once the blood cells have matured they leave the bone marrow and enter our blood stream.

Hydroxycarbamide works by interfering with the production of DNA (the instructions) inside the blood cells. This prevents the cells from continuing to grow and mature, leading to the death of the blood cell which is then removed by the body.

When you take Hydroxycarbamide the number of blood cells decreases so that your bloodstream will be less crowded, your blood will flow more freely, and you will be less likely to suffer a blood clot or thrombosis. The treatment may also help to prevent scarring or fibrosis of your bone marrow in some but not all cases.

Hydroxycarbamide is classed as a chemotherapy drug because it causes the death of some cells in the body.

If you have ET two studies suggest that using Hydroxycarbamide to reduce and control platelet counts reduces risks of blood clotting, bleeding and developing myelofibrosis.

I hope this helps. Best wishes, Maz

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Thank you

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Hi,

I can understand your concerns about going onto long term medication. I was in that space last year. I don't mind admitting that I got very scared when I was prescribed HU, which only got worse when I read of all the possible side effects listed on the leaflet. However, after a long chat with my GP and my daughter (who is also a doc), I was reassured that the risk of thrombotic incidents (stroke, DVT, TIA etc) from not taking HU was far far higher than the risk of taking it. So, with great trepidation I jumped in and.............................. nothing! Absolutely no side effects (then or now) and my platelet levels have steadily reduced to an acceptable level. If anything, I feel healthier and more active than before I was diagnosed.

So I was worried unnecessarily and I can look back and smile about it now - but it didn't feel that way at the time, so I absolutely understand your concerns. I wasn't aware that HU had the effect of reducing the risk of MF until today, (that's an added bonus) but for me it was enough that it kept my platelet levels down and my risk manageable.

Like most people on this forum, I try to drink as much water as I can and have a diet that is high in fruit, vegetables and nuts - which makes sense whether you have ET or not.

I hope it works out as well for you as it has for me.

Cheers

John

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Thank you

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Hello

I've been on HU for 2.5 years. To be brutally honest, I've never felt so well since taking chemo and has highlighted just how unwell I felt prior to diagnosis. I'm now on 1,000mgs daily. It has taken two years for all my levels to be normal. The chemo destroys cells that grow rapidly including those produced from the bone marrow. However, it does not distinguish between "good" and "bad" cells which is why we have FBC's (full blood count) to monitor our liver enzymes, HGB etc.

As for side effects, I was pleasantly surprised with HU, I had a few mouth ulcers, headaches and aching joints and muscles but they didn't last long, only the first 6 weeks. I was given boxes of anti-sickness tablets, but I've never taken one. I usually have a cycle of 6-7 weeks when my fatigue hits me and it hits me hard, but if I can get 10-12 hours sleep in, I'm back on track very quickly.

As for my hair, the HU had the opposite effect on me. I had very thin, wispy hair prior to diagnosis. It was so thin, you could see my scalp. Six months into taking HU, I now have the thickest, longest mane imaginable! I also take Silica supplements for my hair and Glucosamin for my joints plus Vit E and D tablets.

I changed my eating habits, started eating healthy, drinking plenty of water (which I can't stand but I do it!), I swim for 1 hour every day, 5 days a week. Not only do I feel great, but the weight is falling off! For me personally, HU has improved my life dramatically whilst preventing HA, strokes etc. I'm not overly happy to be on it for life, but if it prolongs my life, then I'll gladly stay on it.

Regards

Angela

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Thanks so much to you and everyone who has responded, this is a very helpful website

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Meatloaf they are myleosuppressive drugs interfere with production is stem cells that produce rbc wbc and platelets. Too many platelets - dysfunctional platelets result strokes, TIA etc. Sometimes low dose aspirin is added to keep platelets from sticking together.

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Hi

I am not sure how old you are but look into Pegasys as it is an immune therapy vs chemotherapy and at right dosage it is generally well tolerated and there is a chance of remission.

I have spent hundreds of hours researching and decided on Pegasys since i am only 50 and years of being on HU can actually cause leukemia.

It is a personal choice and everyone is different in how they respond. Join the fb group called essential thrombocytosis group and you will learn sooo much.

Best of luck in your decision. It is not easy!

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Hello could you please tell me how many your blood counts were and whether you have seen a change for the better?

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I started Pegasys 5 weeks ago 90 mg a week and I dropped from 1.3 million to 922 so far minimal side effects for me at this dose but I had one dose of 120 one week and had mood swings and chills

Best of luck with your decision it's not easy

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