I am a 79 year old female UK. I’ve posted first of all when I was diagnosed about 1 year ago. I have ET and BmB confirmed this. I live in Paisley, Scotland and there is only one MPN Specialist in this area and he is based in Edinburgh. I did consult with him privately and he agreed with hospital treatment.I have been taking Hydroxy since August 2022. In the last 10 days I’ve had a terrible and rash over my body, mainly upper body,. I phoned Haematologist and she didn’t think the drug was causing this as it would have happened sooner. She advised maybe stop the medicine for a week. I also take aspirin, and esemeprasole for hiatus hernia.
Any advice would be appreciated.
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Hannah2308
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You can get itching with ET but I've never heard of a rash. It might be unrelated so maybe your GP could help. You can buy hydrocortisone cream over the counter; Eurax cream is helpful for itching. If it IS a true MPN itch, it can be hard to treat - I would keep pushing with your haematologist. Good luck.
Thank you Otterfield, the rash may be caused by me scratching, I try not to but it is hard. I think I maybe allergic to something but I don’t know yet. I’ve been in the garden quite a bit, but I am covered. haematologist said I should stop the drugs for a week. I’ll text the outcome x
The forum is really good and I send love and hugs to everyone xx
While hydroxycarbamide can cause some skin issues like dermatomyositis, mastocytosis, and possible rashes, that does not mean that is what is causing this rash. Suggest following up with a dermatologist to see if you can get to what this rash actually is. We can certainly experience skin issues for reasons other than the MPN or the meds.
Hi Hannah I had this rash and terrible itching for a whole month just after I was diagnosed with pv and before I was on any treatment. I spoke to my gp and he prescribed me fexofenadine 180mg each day. I do get the underlying itch feeling but these definitely help. It may be worth speaking to your gp to see if this is suitable for you. I hope you feel better soon as I know how unbearable this is
Hello Hannah2308! I have ET (diagnosed 18 months ago) and am a year older than you ! I get itching with Pegasys interferon. GP prescribed Cetraben ointment which helps relieve it. I believe one can also buy this ointment without a prescription.
Hi Gilded, thank you for replying, I've been prescribed antihistamines and Zerobase cream. Both are helping and I have to see GP on Wednesday. I would like to know what has caused this. Thanks again, the information on this site is amazing and this is the only place that I get info.
Hi Hannah I get itchy but I've never had a rash with it. My heamatologist always dismisses any symptoms I've ever had has nothing to do with my ET. I now have PV. I'm also from Paisley. I was having lots of fatigue pain in bones . I got told it was my arthritis but it's a completely different kind of pain. Like toothache deep in my bones. On this group people suffer from a lot of things I do. But when I bring it up I get told nothing to do with my PV. I go to my normal doctor she looks at symptoms and says there all symptoms of PV and go see my hematologist.
if you can it may be worth trying to see Mark Drummond, he knows his stuff and is respected by other local haems, he can write /educate your local Haem. He is NHS in Glasgow and private in Edinburgh
Thanks I'll look into him. I've been seeing same doc for over 10 years. I feel like I would be going behind her back. But I will look into Mark Drummond. Thank you
re going behind her back, the priority is you get the right treatment, you could always go see Mark D and if you didnt like what he has to say you could leave it there and not ask him to write you local haem, thats assuming you see him private, alternatively you could ask your haem to get a referral to him for a second opinion. Feathers maybe ruffled but maybe your haem isnt optimal so does it matter.? only you know. I find good haems dont mind the second opinion idea , it tends to be the not so good ones or daree I say it younger ones that get unsettled. your local haem will know who Mark D is , hes been around a long time and well respected by most haems, ie they listen if they have any sense.
Hi Ainslie, I have ET and I did see privately Dr Mark Drummond for a second opinion and he advised me that haematology were giving me the correct treatment. I do feel that I have no support, there is no specialist nurse to contact with any problems. It is not haematology to blame they are just short staffed. I don't understand all the medical lingo and the graphs etc, I was never given this info. my blood confirmed high platelets and BMB confirmed this.
Re Mark Drummond...I got myself referred to him via my Haemo.(I requested it) He's the NHS MPN specialist at the Beatson in Glasgow.
I'm from Falkirk post ET MF and was diagnosed (MF) almost a year ago. After attending the MPN Voice event in London last year felt the need to see an MPN specialist.
I found Mark very helpful and even reassuring.
As has been said on this site before..you have to be an assertive patient to get proper attention.🙂
I have ET and had terrible itching in my legs and feet before I was diagnosed. I now take Cetirizine (anti histamine) at night and apply Cetraben cream after Shower/Bath. Thankfully it has drastically eased the itching. People don’t understand how it’s almost impossible to stop scratching even to the point of drawing blood. It also doesn’t get much sympathy or understanding from people or the medical professionals. Good luck and people here do understand.
it maybe worth seeing a good dermatologist to get a proper diag, the rash isn’t typical MPN , Dr Tidman works at Spire Edinburgh and NHS Edinburgh, he checks my skin etc
I developed a severe rash on HU after about 3 months on the medicine (ET Jak2+). It was really bad on my arms. I had never had it before and I thought it likely related to the medicine - the itch was almost unbearable (I tried all sorts of creams and antihistamines). I took pictures to send to my MPN specialist. The rash in combo with the darkening of my nails and a general feeling of malaise while on HU eventually led my MPN specialist to agree to a switch to Peg. Within 2 weeks of stopping the HU the rash went away..so was it caused by HU - not sure although there were not any other changes to medicine, food, routine at the time. My MPN specialist said he had seen others also develop a rash on HU but that it was extremely rare. We are all different and of course should make any move/change in concert with our medical teams/experts, but I can tell you in my own personal experience, I am almost 100% convinced the HU caused the rash (I had never had a rash like this before in my life and this of someone who has had multiple cases of poison ivy and oak). Stopped HU and rash went away like I said more or less in a fortnight - took about 6 months for the nails to go back to their normal pigmentation.
Hi Hannah2308, i had a similar experiance. I now take Neoclarityn ( prescription) every night all year round.
I was prescribed Neoclarityn originally for severe rhinitis a number of years ago before developing ET.
However, after I developed ET & my particular myriad of symtoms including terrible itching I discovered I could keep the itch at bay by taking the Neoclarityn every night before bed rather than just during the allergy season.
I had the itch prior to starting on HU. I am on 500 x5 days& 1000x2 days.
Occasionally, i forget to take my Neoclarityn! Unfortunately , on these occasions the itch returns very quickly usually within a day or two max.
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