Newly Diagnosed with ET, side effect query - MPN Voice

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Newly Diagnosed with ET, side effect query

AngeLori profile image
8 Replies

Hiya folks...just recently diagnosed with ET and 2 weeks ago i was started Hydroxcarbamide and Clopidogrel,,i have since noticed i am more prone to serious bruising with a huge bump/lump on my hand and had one on inner part of arm, is this just usual side effect? anyone else similar.........

Thanks in advance

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AngeLori profile image
AngeLori
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8 Replies
Helena303 profile image
Helena303

Being diagnosed in Nov 2018. I had bruises coming up before I was diagnosed. Some under by breast. Think my bra was to tight. So bought all new softer bras since them. The bruises didn’t go down I tried oils and they won’t go. I think I knew something was wrong then this was over two years ago. I think it was either because of Et or high platelets or low iron.

My Consultant said I had probably had Et from Nov. 2013. I fell last year and had massive bruises on my legs and developed a lump hemotoma. I showed my doctor. He said it would go down and it did after 5 weeks. I still get bruises after blood tests. But I think it’s to do with the disease. I’m careful now so I don’t fall.

WileyFrench profile image
WileyFrench

Hi there - I take the same things as you plus low-dose aspirin. And yes I definitely bruise more and more easily than before due to the blood thinners. When I was just on hydroxy I didn’t notice the bruising as I do now.

lizzziep profile image
lizzziep

I think it is more to do with the disease than the hydroxy, although that contributes. I often get bruises that I have no idea how I have got them! I get bruises on my legs if my dogs wag their tails on them. Last week I had a massive bruise and lump on my hand, there's still traces of it this week, don't know how I got it!

Best wishes

Lizzie

hunter5582 profile image
hunter5582

I have been on HU several times and turn out to be HU intolerant. The bruising you mention may be more likely related to the blood thinner. I think lots of us with MPNs on blood thinners have this experience. It is important to check out the information on hydroxycarbamide (AKA hydroxyurea) thoroughly and work with your docs re. side effects. HU is therapeutically weak, so the doc may have to keep you on the edge of toxicity to reach full benefit. It is a cytostatic med that works by interfering with DNA activity. It can affect more than the production of blood cells. HU can compromise your immune system (more prone to infections, mouth ulcers, thrush etc.), compromise the intestinal endothelium (constipation, flatulence), and other broader effects. HU is also mutagenic and carcinogenic. HU is a teratogen (causes birth defects), so avoiding pregnancy (both men and women) is very important. Women of child-bearing years should wear gloves when even handling the bottle if they are not taking it. For men, HU can decrease sperm count, potentially decrease testosterone, and pass into semen. Some docs recommend barrier protection when on HU to protect your partner. The risk-benefit ratio is unique to each of us and we all respond differently to HU. All of the meds used to treat MPNs have side effects, so we each have to find what works best for each of us. Some folks do fine on HU and benefit from it, but not all. Hope it all works out well for you.

lizk1993 profile image
lizk1993

Hi there, I'm PV, not ET, but I was given Clopidogrel to take after I had a heart attack. While I was on that drug I bruised really easily, so I reckon it's very likely to have something to do with your bruising.

Regards, Liz

Doggy1903 profile image
Doggy1903

Hello I also have ET. I have been advised to let my haem team know if any unusual bruising occurs. It may be your bloods are settling as you are very recently diagnosed but maybe be safe and ask for advice.

Hope all goes well. I only have hydroxycarbamide.

JackLina profile image
JackLina

I am ET, JAK2+and on Pegasys and clopidogrel. I went to a show the other night and enjoyed it so much that I clapped for a very long time at the end. I now see (two days later) that I have a bruise at the base of my palm. I do bruise but that seems a little extreme. As far as I know it's normal for ET. All the best and try not to let any of these symptoms worry you unduly. They will still happen either way! x

AngeLori profile image
AngeLori

Thanks for the replies folks

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