Itchy skin problem: Dear all, i haven't been here... - MPN Voice

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Itchy skin problem

Lifam profile image
38 Replies

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 profile image
Lifam
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38 Replies
ainslie profile image
ainslie

Could be the Hydroxy but can you see a dermatologist to check, they are usually quite aware of what skin issues are and are not due to hydroxy

Lifam profile image
Lifam in reply to ainslie

Thank you. Will discuss that with my dr first.

hunter5582 profile image
hunter5582

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.

Lifam profile image
Lifam in reply to hunter5582

Thank you so much for your suggestions, my GP will contact my haematologist for my skin problems. I am taking Zyrtex daily for the time being.

Wyebird profile image
Wyebird

You are unde so much stress . My husband has been ill for 8 wks now4 of them in hospital. Nothing compared to you I wish you well

Lifam profile image
Lifam in reply to Wyebird

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

Solyesh profile image
Solyesh

Sorry for the heavy stress burden.

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.

Lifam profile image
Lifam in reply to Solyesh

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

PhysAssist profile image
PhysAssist in reply to Lifam

Hi Lifam,

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.

Best,

PA

Lifam profile image
Lifam in reply to PhysAssist

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

Johnhoogland profile image
Johnhoogland

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.

Lifam profile image
Lifam in reply to Johnhoogland

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

Johnhoogland profile image
Johnhoogland in reply to Lifam

I had no side effects at all. It also improved on fatigue.

Lifam profile image
Lifam in reply to Johnhoogland

Thank you. Really helpful me a lot.

PhysAssist profile image
PhysAssist in reply to Johnhoogland

Hi Johnhoogland,

May one ask, if you did not have side-effects, why did you have to stop taking it?

Thanks,

PA

Franko21 profile image
Franko21

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 .

Lifam profile image
Lifam in reply to Franko21

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.

PhysAssist profile image
PhysAssist in reply to Franko21

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:

ncbi.nlm.nih.gov/pmc/articl...

This explains what the usual dosages are and why athletes take it:

ncbi.nlm.nih.gov/pmc/articl...

Best,

PA

Franko21 profile image
Franko21 in reply to PhysAssist

Thank you so much for this information great to know dosage . Yes it does make my face tingle and my lips too .

Spanelmad profile image
Spanelmad

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)

Lifam profile image
Lifam in reply to Spanelmad

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.

Spanelmad profile image
Spanelmad

It's probably the stress . Give the antihistamine s s chance it's taken the four weeks for me to start to.settle .Plus drink plenty of w a ter

Lifam profile image
Lifam in reply to Spanelmad

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.

Chicagopv profile image
Chicagopv

I have itching from pv and switching to Jakafi helped. Also Atarax or hydroxyzine helps immediately. So does Benadryl. All best for this hard road.

Lifam profile image
Lifam in reply to Chicagopv

Thank you so much x

Cambria61 profile image
Cambria61

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. 🙏❤️

Lifam profile image
Lifam in reply to Cambria61

Thanks for your response, I'll make sure note of this too.x

KLCTJC profile image
KLCTJC

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.

Lifam profile image
Lifam in reply to KLCTJC

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

veryoldman profile image
veryoldman

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.

Lifam profile image
Lifam in reply to veryoldman

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

Andrew8 profile image
Andrew8

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.

Lifam profile image
Lifam in reply to Andrew8

Thank you so much for giving me more ideas. I'll also make note of the cream you're using. Thanks again x

Spanelmad profile image
Spanelmad in reply to Andrew8

Your right when you say it's like the shingles itch

william-Indo profile image
william-Indo

You could try Zyrtex or beta alanine to resolve the itchy.

Tumeric taking with black pepper also have a great benefit to reduce the inflamation.

Lifam profile image
Lifam in reply to william-Indo

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

william-Indo profile image
william-Indo in reply to Lifam

Looks your dose for zrytex is too much It is more safety to take it once a day.

Just suggest 🙏🙏

Lifam profile image
Lifam in reply to william-Indo

Thanks. That's what I thought but already told GP who said it's OK at this stage. Thanks for the concern.x

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