Hi I’m interested to know if anyone else has had skin changes on long term hydroxycarbamide I’m on 1500 mg daily over 7 days
This has had a dramatic change in my opinion to my skin intermittent rash on calf’s on my torso on my forehead and a brown birth mark type patch on my cheek!
I’ve tried six different lots of creams off my GP and consultant but nothing works
I was referred to a dermatologist but I’m awaiting triage to assess before being referred on to a dermatologist!! Ridiculous
I don’t know what is going on with the nhs
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PhilReade
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Hi phil, like you I'm pv age 57 been on hydroxy for 3 years ,about same dose as you. My skin is noticably thinner. In particular I've had actinic keratosis treated on my right cheek with cryotherapy. On my left temple I've had an excision with suspected squamous cell carcinoma. I've been awaiting confirmation for over a month. I certainly don't blame the nhs, I'm fair skinned and never wore hats or sun cream.
Hi thanks for your reply John I’ve just emailed my consultant this morning to ask his views on the birth mark type patch on my cheek He also prescribed two creams I’ve used for 4 weeks which haven’t done anything on my forehead rash or my cheeks
It’s worrying with the high dose of hydroxycarbamide use
I’m dark skinned and have used sun cream and use 50 factor now always
I’ve noticed my skin has gone darker with little sun exposure and I wear sun protection all the time .I use cerave think it’s the best thing on the market for any skin type .
Hi PhilI to am on Hydroxycarbamide 1000mg one day, 1500 next. Then back to 1000mg.
My skin does look browner on forearms, but have been more sensible this year since starting Hydroxycarbamide with wearing suncream on all sunny days. As well as baseball cap.
I have a meeting in 2 weeks with haematologist will again ask about Hydroxycarbamide and sun exposure.
Just be sensible and don't spend to long in direct sunlight, even with cream on.
Hi Phil, would you consider a change in medication? I’ve noted some on the forum have similar issues with ruxolitinib, but Pegasys might be worth a discussion.
Thanks for the link that’s really interesting I’m so disappointed I have to push for screening when I’m on a high dose and it’s been 8 years since my start of hydroxycarbamide
It’s not good is it? Quite often things are a fight.
I write letters to my registered GP on any genuine concerns I have, provide any necessary evidence and hand deliver them to my GPs. This works better for me than being ‘number 17’ in the queue only to be cut off when you get to number one. Likewise, there is no email address other than for complaints, so not much choice.
I totally agree with you luckily I have an email address for the surgery and the practice manager The way GP surgeries are going isn’t good unfortunately!
Suggest that in addition to follow up with a dermatologist, reviewing the situation with a MPN Specialist familiar with hydroxycarbamide. If this is what the issues is, there are other treatment options you can consider.
Thanks for the information I’ve sent this to my GP and will take this up also with my consultant I’m a bit disappointed with my GP surgery to be honest I really have to push for things there Thanks again
Bear in mind that your GP likely knows little to nothing about MPNs nor the drugs used to treat them. It really is outside of a GP scope of practice. Expect that you will need to educate other providers about MPNs. That is why it is so important to build your own base of knowledge.
My skin has gone thin and very wrinkly recently, and now I have another ulcer inside my eyelid. The last one took months to heal. My mouth is sore and my tongue looks a mess.
I have had a bit of a cough for some years.
I have been on Hydroxy 1,000 mg for 13 years. I have never been offered a skin check.
I haven’t seen my haematologist since November 2019, just a blood test and a phone call every three months.
The care of patients with ET does vary considerably from one NHS hospital to another.
Wow that’s shocking to hear that you’ve not been checked I would press for seeing a dermatologist 13 years is a long time who has been treating your ulcers ?
Borage, Hydroxy causes magnesium loss. Both magnesium and vitamin C are important for your skin. Liposomal vitamin C offers good absorption and other features.
Morning Phil wow what a releif to hear that somone else besides me is having changes to the skin that could be linked to hydroxy. I have also tried different types of skin creams with no success. I would be very interested to know what your dermatologist has to say on the matter. 2 years in to using hydroxy l managed to see a dermatologist part of my Gp practise who made it clear after a 10 minute consultation that a factor 50 sun skin lotion would help ....anyway good luck with this one its such a worry I know.☹️.Best regards Adiewon
Hi thanks for your reply I’ve used Eumovate,hydrocortisone,mometasone,skinoren,daktacort and Cetraben nothing works I’m just waiting to see a dermatologist but there’s a huge waiting list !
Crikey Phil the whole country UK anyway seems to be on a waiting list, your list of creams used is very very useful thank you. These skin issues are more than skin deep and treatments offerd need to take this into account I think. Good luck, l will keep plugging away at this and will post results.Adiewon
After I’d been on hydroxy for 3 years I developed extremely painful ulcers on my toes. I had various treatments which didn’t work and was eventually referred to a dermatologist. When I saw her she said she didn’t even need to examine me (she still did) as when she saw I was on hydroxy she knew that was the culprit as it was well known to cause issues with skin. I was changed on to Anagrelide and the ulcers healed. I often wonder if there is any drug/tablet that doesn’t have a side effect.
Hi Lizzie. Just to say, I’m totally with you on that last sentence.
Controlling serious disease (not just MPNs) in many cases requires toxic medication, it’s almost like, ‘like is treated with like’
The best thing that we can do is educate ourselves on our disease, be vigilant to changes and advocate strongly for a change in medication if we feel it’s necessary. This forum is an excellent platform for helping us achieve that.
I am on 500mg Hydroxy daily, since going on Hydroxy about 4 years ago I have had some skin issues on the forehead. Thankfully these were benign but the Dermatologist told me I would need to be careful. What you need to keep in mind is that Hydroxy increases the risk of cancer. I use factor 50 every day regardless of the Sun. I always wear a hat and never short sleeves or Shorts.
I use factor 50 my mane problem is on my forehead it’s a red blotchy rash nothing touches it in creams I will discuss it again with my Haematolygist on my next visit
I started on 500 mg of hydroxyurea (HU) daily, then went up to 750 and 1000 mg since platelets were still high. This led to a serious skin reaction: scaly skin on hands and eventually blistering. I saw a dermatologist who said that this was a reaction to HU and prescribed a steroid cream that worked well. I went off HU for a while and now am back at 500 mg, but only MWF. Platelets are still relatively high but stable.
I’ve tried hydrocortisone and Eumovate but no different in skin changes I’ve just received a face to face appointment next Friday with my GP to check on my skin patches on my face
My dermatologist prescribed a betamethasone dipropionate ointment. It's generic in the US and goes simply by that name; I don't know what it would be called in the UK. A NHS site mentions Betnovate and Betacap as brand names. It worked very well for me.
Hi, I have been on Hydroxy for just over two years and noticed my skin and hair becoming dry, my nails have also become quite thin. Recently I noticed a couple of red blemishes on my forehead, one was rather sore so of to my GP who referred me to dermatology. Actinic keratosis was diagnosed 'sun damage'. I was prescribed a cream 'Efudix' which I must apply daily for one month and this will seek out and destroy the damaged cells. Although I live an outdoor life I have never been a sun worshiper, do not visit hot countries and never been on sun beds. Since diagnosis I have worn factor 50 all year round (I do not poke my nose outside the house without it) and still this has happened. As I go through a lot of sun block I managed to persuade my GP to prescribe it for me which he agreed to do and also prescribed Vit D supplement to compensate for the lack of Vit D I would not be getting from exposure to the sun due to the sun cream. I asked both my GP and haematologist if I could have an annual review with a dermatologist and the reply from both was NO, apparently this would overwhelm the dermatology department. There advice was just to 'keep and eye on things'. I have bought some clothing with UV protection in it which was reasonably priced from Mountain Warehouse, they do quite a good range. The dermatology specialist told me to stop worrying and to carry on with my cycling etc, wear my shorts but be sure to reapply the sun cream every two hours even if the instructions claims it protects for ten hours. I wear a hat when I can (I do feel a prat at times). If this becomes an ongoing issue due to Hydroxy then I feel the only option is to 'jump ship' onto another drug, I do not want to give up my outdoor life. Good luck to you, I hope you get sorted out.
I have PV and have been on hydroxy for 6 years. Currently on 1000mg/day -gradually increasing. I am very careful with the sun but have had 3 visits for actinic keratosis. Overall my skin has become very dry and my nails are dry ridged and frequently split wih toe nails thick and crumbling. In the last 18 months I have had periods of eczema on my face and back.
At first the GP prescribed low dose steroid which did work to an extent but I have resisted using this as my understanding is that thins the skin -the last thing I want . Most recently I have been using Zerobase twice daily(or more) and at the moment the exzema is under control. I have considered switching to Interferon but apart from skin and circulation problems, hydroxy. does the job
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