Dear all, i haven't been here for long time, have been looking after my sister she has incurable bowel cancer, and I have been overwhelmed with tremendous stress. Have been on hydrea just over years, have been maintaining, always has a bit of itchy skin.Lately I have lots of pimple like mainly on both my thighs, once scratch the itch would be unbearable and feels lumpy. Wonder if anyone has the same problem. My GP suggested may be side effects from hydrea ir stress? Was suggested to take anti histamine to ease the itch. I wonder if anyone has this type of skin problem
Cheers Rossana xx
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Lifam
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This kind of skin issue could be from the HU or the stress or the MPN or a combination of any of the three. It is worth noting that the skin is the largest organ we have and is very sensitive to stress. Skin issues are the leading way that stress affects the body.
Antihistamines can help if this is a histamine-based skin reaction. I take a daily Zyrtec to prevent rashes/itching caused by Besremi. I also use Eucrisa to treat eczema and he occasional popup rashes that the Besremi causes.
Suggest consulting with a MPN Specialist and/or a dermatologist about the issue. A GP is unlikely to be familiar with MPN symptoms and HU adverse effects, but still might be worth asking.
Wishing you and your sister all the best as you move forward.
Thank you so much. Yes, I do realise stress can create lots of illness. My GP is keeping an eye on my problem and will contact my haematologist when necessary. Thanks a lot.xx
It sounds like it could be from the HU - I had something very similar happen when I was on HU. Mine got very bad to where it was making it impossible to sleep at night despite a high dose of antihistamines.
My GP said may contact my haematologist regarding changing medications. I had been fine with hydrea until this skin problem lately. She suggest antihistamine 3 times daily. But chemist said it's a 24 hrs one, only once a day. I'm a bit confused, so I take 2 daily. Will talk to GP on Monday. X
While Zyrtec [Cetirizine] is generally a 10 mg once-daily medication, it is also safe in significantly higher dosages [presuming normal kidney and liver functioning], and while we don't recommend it that way routinely, we do have some patients with severe eczema who have been taking it up to 4 times daily [maximum dosage = 40 mg/24 hours] for years without any evidence of adverse effects. Unlike myself at 10 mg/day, they don't even seem to be very sedated by that dosage.
I don't have a specific reference to offer for this, but it was confirmed at an regional allergy and asthma conference I attended some years ago.
Thanks. Yes, it's 10mg, I asked my GP who suggested take 2 a day is fine at this stage, i also don't seem to be sedated by that. I have blood test every 2/3 months normally, my next blood test will be in 2 week's time, by then Dr will look into my skin problem again. Thanks again for your concern.xx
it could also “just” be MPN related itching. If so, discuss with your hematologist switching to Ruxolitinib. For me it worked great. All itching disappeared. When I had to stop ruxolitinib , itching returned in a couple off days.
Thanks, I'll definitely mention that to my haematologist. Did you find Ruxolitinib less side effects than HU? I have been taking HU 4 years and very minimal side effects except the skin problem lately. In fact my GP had mentioned that she may ask my haematologist if changing medications when necessary. Thank you, been a big help mentioning the Ruxolitinib. X
Hi , I’m on Interferon 90mcg for ET and Jak2 and have itching all over and rash on thighs and back someone on here suggested Beta Alnine and it has worked wonders for me only half a teaspoon in large glass of water when I have itchiness , also before shower when it’s always worse . At first it makes you fell tingly ( not itchy ) then the relief from the itch . Hope you get relief soon .
Thank you so much. Thank you all for all your kind responses to my skin problems, all of your advice really help me a lot.will keep in mind and discuss with my GP and haematologist.
I concur- but for some reason with me, it just makes my face feel really hot and kind of slightly pins-n-needly, but it's a brief and tolerable sensation, and well worth the decrease in overall itchiness I have all the time otherwise.
Most days I take it first thing when I get up, and again when I get home from work with good, if slightly imperfect relief from itchiness. That makes my total dosage about 3 grams/day split into two 1.5 gram doses., which is well under the maximum recommended dosages.
The mechanism for it causing these side-effects is explored here:
I've been on Hu for four weeks and have itched from the start.I'm taking fexofendine 180 mg was taking it everyday now just taking on Hu days.(only on By 3 days a week)
I had been HU 4 times weekly, and platelets always maintained in 300 mark, lately platelets been up just under 450, so haematologist suggested taking 5 days weekly instead of 4. I really think platelets a bit up due to tremendous stress the past 8 months.
Thanks. I started the antihistamine only a week ago. As I mentioned earlier that GP suggested to takec3 times daily, yet chemist said just 1 because it's a 24 hours one, I'm confused so I take 2 a day Hope will settle down soon. Thanks.
There are known skin ulcer type issues with hydroxy, so I would see a dermatologist. As far as itchy skin, I am given hydroxyzine for itching at a low dose which helps tremendously but it is very sedating to me, so I take only at night. 🙏❤️
Taking high doses of antihistamines can be safe. So, I think if your doctor was ok with twice a day you could try it. Do all the things good for your skin. Cool short showers, mild soap, moisturize. There is some OTC anti itch creams too. Dermaleve is a great one. Another medication that can help with itch is gabapentin, just something you could mention if nothing is working if you could try it. Hunter mentioned Eucrisa, great drug! Topical steroids can help. I would see your dermatologist and maybe they can treat your skin especially if HU has been working for you and you don’t want to change. Maybe they could help. Will be praying for y’all. I am so sorry about your sister. Stress just aggravates everything.
Thank you very much for your advice, I have been taking antihistamine twice daily. Have made notes for all your advice and suggestions, so I can discuss with my GP. Much appreciated for all your help. X
For what it's worth, Lifam, I developed a nasty itch a few months back. Luckily for me, someone on this platform posted their success with Aveeno lotion. Tried it and the problem was resolved almost immediately.
Ma y thanks. I'll definitely try anything suggested. Yes, this is like big family here, and everyone is so friendly and helpful. I have learnt a lot here. X
I've had itching problem after experiencing "symptoms of shingles", even on Jakavi, tried various prescribed things, which did not work, eventually tried organic Aloe Vera gel which applied after a morning shower and before bed seems to keep it under control.
Thank you. I started taking Zyrtex twice daily a week ago, so just giving it sometimes to work on and hope for good results.Heard of turmeric with black pepper and will certainly start on that. I have been making notes from all of your advices and suggestions, and will discuss with my GP in two week's time after a full blood test again. I'm really grateful to be in this group, all of you have been so helpful. X
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