Since starting HU almost three years ago, I have been getting order progressively worse bleeding under the skin particularly on my hands.
It has now also started tearing.
My hair has thinned dramatically too
I was put on HU when platelets were 550.
I can ndetstand that HU alters cells and understand this includes hair and skin that renew frequently
I cannot tolerate this any longer.
My hands are disgusting
This does happen to me,my arms and legs too,esp if my large strong dogs knock me,handling my horses now is also a problem.I think mine is worse now ,I have been on Hydrea for 7yrs and of course I am older now.I feel for you it is so depressing,hair is another issue,mine is drier,not as healthy looking as it was
Sorry ,knocked my pad,I put argan oil on mine which really helps,and their are lots of products to take and use externally here in France.
I’m not aware I do anything to cause mine. I’m not aware I bump my hands at all but I must do somehow.
It’s totally disgusting how my hands look and with my work they’re on show all the time
Thank you for your response.
I’m in uk
Yes I know mine appear too without a knock,sometimes my watch bruises my wrist in the same way.I also have red blotches on my face which really upsets me,,vanity all is vanity!!!Recently one was carcinogenic and I had surgery. ...also on my chest.....the dermalog and surgeon said it was typical of Hydrea to cause skin eruptions and bruising.I am P V . Apologies for dotted about reply.Keep well ,probably no one notices as much as you do,so try not to worry,I know ,I cover my scars with dark glasses ,my hair,hats if it's cold,,people say to me 'why'?Best to you .Sally
Sorry again ,tried to correct spelling ,meant there are products.I wear gloves all the time as a tiny knock and my hands are like yours try not to get too depressed about it all,most of us have side effects,at least we are alive. I am a sculptor so you can imagine how my hands bleed when working.Other Meds too ,Plavix etc do the same.Very Best.
Hello, how distressing for you, have you spoken to your haematologist about this, or perhaps your GP for a referral to a dermatologist who may be able to help. Kind regards, Maz
Hi Maz
I’ve spoken to both my Gp and Haemo when the bleeding under the skin first started and again about 6 months ago.
Haemo said nothing to do with HU . It only started about 7 months in to using HU and were teeny tiny red dots.
Now they are very big and the final thing is my skin has started tearing. Very painful!!!
It’s also now affecting my arms the same. I bumped into a door handle about 5 weeks ago and instead of a bruise it torn the skin!!
I’ve read side effects of hu and it DOES say bleeding under the skin and also thin fragile skin.
I’m afraid I cannot tolerate this any longer and would rather be off HU.
I can’t take Angrelide due to heart ablation
I was quite happy just in aspirin.
Was put on HU when platelets were 550
No symptoms and no thrombotic events or clots
Thank Maz
Best wishes
Rose
It seems that U k and Fr medics have totally different opinions!I really hope you find something to soothe your skin soon, I suppose different people react in many different ways.Good Luck .Sally
Hi Sally
Thanks for your reply. Very much appreciated.
What are the views of medics in France please?
Best wishes
Rose
Hello Rose,
how upsetting this must be for you. I really do feel for you. I’m on hydrea and I have definitely noticed my skin has become thinner and more sensitive.
The bleeding under your skin however could equally be due to your condition or even aspirin as well as hydrea. I do think you need an expert opinion. Whether that is a dermatologist, a vascular consultant or another haematologist for a second opinion should be determined by your GP.
I hope you find a way forward in finding a solution to this distressing situation. Keep us updated.
Mary xx
Thank you Mary
I’m not on aspirin any more as thought that might have been the cause but it’s obviously not.
These marks started as small red dots in my hands about 7 months after I started HU.
I have read HU can cause bleeding under the skin and fragile thin skin, so it seems to fit
Kind regards
Rose xx
Does interferon work for ET? My platelets were only 550 when I was put on HU.
It’s slso given me painful mouth ulcers and a very sore tongue.
What are the side effects of interferon?
Thanks again for replying
There are people on this forum who are on peg interferon for ET.
They tend to put younger patients on this medication - but that’s not to say that older patients have not been put on it. I think it’s a lot to do with your health care provider, but you may have a strong case as anagrelide is not suitable for you.
There are side effects as with every drug. Hopefully, you will get some response from people who are on this medication and therefore more knowledgeable than me.
Mary x
Just to say, my platelets were onlyb500 when I was put on hydrea, but I was high risk due to age 60 at the time.
Thanks Mary
I was 62 platelets 550.
No symptoms, no clots or anything.
Really wish I’d just stuck with aspirin.
Had beautiful thick hair and good skin.
Best wishes
Rose x
Rose,
Your platelets were bearly above normal at 550! What we're they thinking? I am now 66 and my patelets are at 620. Still only on aspirin. Treatment slightly different here in NZ. All the best Lyn ps no symptoms as yet!
Hi Lynn
Thank you so much for your reply.
I know ..... my platelets weren’t too bad .
What’s the thinking in NZ about when to start HU?
I believe that in some places they are now changing their thinking and not basing it on age
Best wishes
Rose x
Hi Rose,
Sorry my comment was a brief. You are dead right about the age thing. I was diagnosed with ET and CALR in 2015! It was a real bad year, my platelets were picked up by a random blood test. They were 770. My GP asked for a repeat test 6 weeks later, they were 970!! so she referred me to a haematologist. Then of course BMP, and further gene testing. I was 63 and was told when I reached 65 I would have to start HU! because that was the said AGE!! here in NZ. Well I turned 65 and had no symptoms of ET! I explained to the Haem Dr that I felt age was not a good enough reason to put me on HU! He said I had 1% chance of having stroke! No different than anyone else of my age!
He agreed with me and said he would leave it another year, which was last November. My platelets have since come down to the low 600s as mentioned. He was amazed at how well I looked! and said keep doing what you are doing which is: exercise, ( I have an active job, nursing, 4 days a week (shift work) night duty to boot hahaha) Good diet! and little stress!! most important. Drink H20! He seem very much more relaxed about not starting HU!!! yay
I will consider HU if required in the future if my platelets go over 1000. Wait and see.
Oh and I am on 100mg of aspirin ac daily which I was happy to take, and have since the diagnosis.
I do suffer with the odd migraine which I have all my adult life but apart from that nothing!! and which I am very grateful for.
All the very best Rose
Lyn xx
Yes, I had no other health condition. My only risk factor was age. However, for me hydrea works well.
I hope you can get some expert advice soon.
Dear Rose, Boy do I feel for you and understand completely. This will be a long reply but I want to try and help you. Your hands look like mine. I usually have 3-4 bandaids on my hands and arms plus some on my legs because my skin also tears really easily. I tore a large piece brushing against the leather on the inside of a car door. My doc wisely suggested wearing slacks & long sleeves but I’m in Florida (USA) and it’s hot. For bad skin tears I use Viscopaste under gauze until my skin reattaches. So the fronts of my legs have multiple light areas (I assume newer attached skin) and ugly red everywhere else.
But you need to consider your goal. I can tell you that as much as we HATE!!! the ways our hands look, it’s so much better to have ugly hands than be paralyzed from a stoke or die from a heartttack. Both of which Hydroxyurea protects us from. I’m still taking aspirin & blood thinner (along with Hydrea) because I don’t want to die from a blood clot. I almost did once and that’s how I was diagnosed. I have some suggestions that help me. For mouth sores I try to drink water then quickly take the HU followed by lots of fluid (caffeine free). Most of us aim for 2-3 liters a day. When you have a mouth sore mix a solution of 1 teaspoon each salt & baking soda in 16 ounces of water. I heat up the water so salt dissolves faster and keep it covered in the fridge. Then through the day swish your mouth with it, keeping it in your mouth for a while. The solution lasts a few days. And only use tooth paste that’s super plain-no tooth whitener, etc. Get a soft bristled tooth brush & soften it more by running really hot water over the bristles for a few minutes. If that doesn’t do the trick after a week or so, ask your doc for something stronger. For your hands you can buy a heavy face concealer. That really minimizes the appearance on our hands of our damaged skin. It takes almost nothing for me to bruise & sounds like you’re the same. I’m perhaps luckier as I’ve always been more about what’s on the inside of a person than their appearance, I’m 67 so don’t feel the same pressure to look great and have always placed being comfortable above how I appear. But the main thing is I’ll take hideous hands if it keeps me alive. Good Luck. Please know lots of us have felt the same emotions you are feelin. And I still do HATE my hands periodically but I’ve learned to accept it as my burden; quite a little burden compared to so many people. Katie
Hi Rose, today it's not a good day I guess.
I am 64 on the same medication. In the winter I take a vitamin supplement.
Try plastic spray skin after cleaning your torn wounds.
Once dry put a small amount of concealer over your bruises.
Ask your team to see if there are other alternatives.
At the pharmacy there are fine cotton gloves you could choose to wear????
I also massage in at night ordinary olive oil.
Keeps my hands supple.
Mouth ulcers perhaps their diluted mouth washes and be gentle on tooth hygiene.
Your dentist can recommend some solutions.
I wish you well and hope you can feel much better soon.
Regards Annemarie.
Thank you Annmarie and Katie
I am already using a concealer for my hands but the final straw had been the skin tearing.
I will take onboard what you have both said and think about it again.
I may ask my Haemo if I can take a break from it and start Aspirin again as a precaution to clotting.
Kind regards & Best Wishes
Rose
Hi Inca I don't know your age or your history but there are many people who are just on aspirin but they don't have symptoms, HX or any thrombotic events and most are under the age of 60. You really if you can need to see a specialist and maybe they can help you. There is interferon also. I had the bleeding under the skin also but I don't think it was when I was on HU and was told it was from the aspirin. My husbands hands look like yours and he has no MPN just on aspirin. Are you taking a lot of HU? maybe your doctor would be agreeable to cut back some? Sorry your going through this. Mickey
Hi Rose. Sorry you are having this problem, it appears most of us have this skin thining, yes like you I bruise very very easily . It sounds as though it’s quite extreme in your case, I can understand you feel conscious about it, and it does look as though it’s uncomfortable. I don’t have any more to add than has been written to you. I would certainly mention it to your Heamo to see if he can help.
Best wishes Sandy x
Thank you so much Sandy.
My Haemo said not HU but I’ve read it causes alopecia and thin fragile skin so I have some ammunition to give to him.
I am finding it very distressing now.
It started out with tiny red dots but it’s dusgusting now
Best wishes
Rose
Hi Rose. It’s quite strange as some Heamatologist do not seem to agree on symptoms as we have seen on here at times. Would it be possible for you to see a different specialist, as this is causing you distress. Which is not good in any condition.
I do hope you get some answers soon.
Regards Sandy.
Sorry to come into chain so late. I was diagnosed with ET 2 years ago, age 65 - platelets 950.
HU now down to 10 per week (were 3x per day at outset), plus asprin, plus 2 types of anti histamines as I have systemic mastocitosis as well.
1. No similar problems with skin, although it is slowly getting more 'blotchy' and itchy. Didn't know if this was just old age? I have noticed the red dots, so will keep an eye on them, thanks.
2. Haem has said I might consider interferon in due course as he says this would keep palatelets under control and also help with Mastocytosis??
3. Hair was thinning a bit, so use Nioxin range of shampoo and conditioner - try it, really good?
As someone has already said, it is better than the alternatives, but no fun!
Best wishes and thanks to all contributors as always.
Stephen
I had major problems with the skin on my feet after being on hydroxy for 3 years. Haem said it wasn't the hydroxy. After months in agony and ulcers which wouldn't heal I saw a dermatologist, who said immediately it's the hydroxy, it affects skin especially on the extremities - hands and feet. She wrote to my haem and they changed me on to Anagrelide, my feet healed, still have the scars though. I was also prescribed Amitryptilene for pain from the nerve damage in my feet hydroxy caused. The dermatologist told me they don't like to change you from hydroxy as that is the cheapest treatment! I do sometimes get red marks on my hands, and the skin is very thin. That could also be an age thing though. x
Hi, I'm sorry to see and hear of your distress with Hydrea. I've had PV for four years now and started Hydrea last March when my platelets were around 1300-1400 as I was feeling ghastly. My consultant let my platelets rise because I do a lot of sport. However, since starting on hydrea I have constantly had mouth ulcers, usually three at a time, but making a dilute peroxyl mouthwash with water 2-3 times a day works better than dilute salt water. I try to hold it for about a minute.
Also I get large blood blisters in my mouth, small bleeds on my hands and my skin is easily torn. This might be a fluke but I use a lot of petroleum free oils on my skin to stop the iching and the best oil I find is olive oil and I find it seems to help healing.
I don't know if that helps, good luck.
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