Has anyone suffered with skin rash on hydroxycarbamide? My consultant says it’s not related but I’ve only had since being on hydroxycarbamide red rash on forehead and patchy dry itchy skin on my body
I’ve had Eumovate and Daktacort but it doesn’t really do anything be interested to know if anyone else suffers
I too and I am on Hydroxycarbamide but had a rash before starting it. I believe it is due to having PV which I had had for 6 years , have you got this? For the 6 years I was given every cream available, nothing worked except scratching until my legs bled. My son discovered Herbal cream made from refined Cannabis, Hemp, bee's wax and another type of barrier cream , totally legal with NO 'active' ingredient's and all available from Health Shops. My rash cleared in two (2) weeks, my doctor clapped when she saw the results and recommended it too other patients who had the same problem, the Dermatologist who failed to treat me said she thinks it worked . I haven't had any recurrence of my rash in a year now. It worked try it ,at least it is worth the try . I can give you the address in UK of the cream I used.
Hi I have 50/50 PV and E/T my Haematolygist has said Wow I’ve heard of people using cannabis oils creams ect to good effect sounds well worth trying
I’m on 1500 mg a day of hydroxycarbamide after my splenectomy in 2014
Thanks could you send the information
Phil
Hi Bordeauxgirl, I read your note with interest. I started on hydroxycarbamide recently and have had a skin problem with my hands in particular for some time and since starting HU I think it is getting worse. Could you let me know what the herbal cream is that has worked for you please? I'm in the UK, so would like to try it. Many thanks,
David
Hello David, here's the address you need to get in touch with , as I said the rash started BEFORE using Hydroxy, but carried on for 6 years afterwards I started itching with the rash. As it contains NO active ingredients there should be no problem having it sent to you, they might even send it from Guernsey direct to you. just ask them.
THE ORIGINAL ALTERNATIVE , NORTH QUAY, ST. PETER PORT, GUERNSEY,GY1 2LO, They will let you have the details of the company in Norfolk who produce the cream. It contains Organic Coconut oil, Organic Bee's wax, Cannabis EXTRACT, and Hemp EXTRACT. That's all and I found it a miracle after so many years . If I can find the Norfolk address I will send it to you. Best wishes June.
Hello June, Many thanks for sending me this information. I too have had a rash/ eczema condition on my hands for at least 5 years, but since starting on Hydroxy it seems to be getting worse. Previously I have tried a variety of medications and still use some to keep it under control, but nothing has cleared it up, so fingers crossed. I have found their web site so will order their CBD balm.
Best wishes, David
Hi David, Hope thes balm helps you as much as it did me, the web site you found is it the Guernsey one or the (not Norfolk but Suffolk) sorry for that , I have the Suffolk one now if you do need it. Let us know if it works for you I do hope so. June.
Hi June, The site is cbdbrothers.com/all-categor... and it shows their addresses in Guernsey, Suffolk and Bury St Edmunds, plus I can order it online. I think it is the Original Edition CBD Balm from what you described. I will treat myself to a small tin. Thank you again for passing this information on.David
Rash , scaling and other dermal toxicities are known common reactions to hydroxycarbamide (AKA hydroxyurea). Facial erythema is another common reaction. online.epocrates.com/drugs/...
drugs.com/sfx/hydroxyurea-s...
ncbi.nlm.nih.gov/books/NBK5....
Given the timing of what you are reporting, it is reasonable to think that known adverse reactions to HU may be the issue. Suggest putting together the facts regarding hydroxycarbamide and reviewing with your consultant again. It may be that you will need to review this with a MPN Specialist as some regular hematologists are not very familiar with treating MPNs.
Hope you get this sorted soon.
Im back at my Haematolygist on March 17 th I will discuss this further with him my forehead is just red rash and nothing touches it and it’s gone worse over the last 12 months I’ve been on hydroxycarbamide since august 2015 and increased from 500 mg daily to 1500 mg daily
We each tolerate the meds used to treat MPNs differently. I was unable to tolerate HU. I experienced toxicity even at 500mg every other day. It was also ineffective at controlling the erythrocytosis even at higher doses. I have done much better on the interferons, Pegasys and now Besremi. For me, IFN has been both much more effective and way easier to tolerate. Not everyone is as fortunate.
At 1500 mg qd some side effects from HU would be common. You may wish to explore other options for treatment. legeforeningen.no/contentas...
mpnjournal.org/how-i-treat-...
The two first-line options are the Interferons (Pegasys/Besremi) and hydroxycarbamide (hydroxyurea).
drugs.com/monograph/hydroxy...
It seems a bit odd that your current consultant would say that the rash which is a common HU adverse effect is not related. Particularly since you are on a high dose of HU. I would suggest getting a second opinion from a MPN Specialist rather than a regular hematologist. Just in case you have not seen it, here is a list.
All the best.
Just a quick note regarding a rash with Hydroxy, my rash was definitely not caused by the drug. I looked up my first letter diagnosis and it was stated that the rash was there BEFORE I was prescribed the Hydroxycarbamide, in fact it was three months after confirmation of PV that it was suggested I started the drug, so I am thinking it's really related to our disease, when folks go onto the drug they immediately connect it together as the cause . Just my opinion maybe different to others. Best wishes to one and all.
Timing is a vital clue to sorting out what is the PV, what is the meds, and what is unrelated. The rash could certainly be related to the JAK2 mutation or possible be unrelated. I tend to favor related. The JAK2 mutation causes a number of inflammation related problems. I also experience eczema, which I do believe to be JAK2-related. I expect you have already looked at what is in the literature, but just in case, here is one example. healthline.com/health/polyc...
Sounds like you are on the right track to sorting things out. hope you find solutions soon. FYI - I have found some very effective ways to control the eczema. Maintaining a healthy skin moisture barrier with ceramides and treating outbreaks with Eucrisa.
All the best.
I did when I first started taking Hydroxy, but it cleared up after 3 months - it resembled eczema.
My Haem told me it was a common side effect, prescribed an emollient and was delighted when it disappeared.
I got a rash itchy, but the doctors told me it's all related to pv . X thought it might ease when started medication x
Most definitely. The rash was one of the reasons that I eventually switched from HU to Peg. It only started to develop once I was at fairly high doses of HU (1,500mg/day). It was confined to my arms (mostly forearms) and it resembled poison ivy rash. It itched beyond belief and was so bad it prevented me from sleeping in more than spurts for a couple of hours. I tried every lotion/ointment that the doctor could prescribe to no avail. It did eventually go away on its own after about 10 days - 2 weeks but by that time given that and other SE we had made the decision to switch.
Hi, just found your post when doing a search about Hydroxy and dry skin. Had noticed dry harder bits of skin on my forearms, and some dry burning feeling skin on my cheeks. Gp has diagnosed eczema, haematologist thinks Hydroxy likely cause. Been prescribed eczema cream for daytime and another for at night, and steroid cream to help it clear too.
So I’ve been applying all, 3 weeks now, and it has relieved some, but I still find myself itching and without realising still getting broken skin from even light scratching.
I’ll keep going, but am concerned about suncreams and how that might impact on my skin. Avoid sun obviously, but anyone on here have a good sun cream suggestion? I’m in the uk.
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