Itchy Skin problems

[nanmc]

This is just me flagging up to my friends it is not necessarily the drugs or the condition we have but also a change in formula to a trusted brand that can cause problems.

I have been using a new Nivea lotion mainly on my legs for dry skin over the last few months. At the same time I had an alteration in medication dosage for Polycythaemia Vera that I have and which can have the side effect of itchy skin.

I am asked by the consultant or registrar fairly regularly if this is occurring.

I was experiencing a severe reaction, an itchy red, pin prick rash.... hives which is only just fading after numerous attempts at relief and an email query to my consultant for advice.

Last night I had a light bulb moment and searched adverse affects to Nivea Q10 lotion. Low and behold straight away several articles on the same problem, which has occurred to others over several years. The lotion contains a specific ingredient now which has caused problems such as mine it seems.

Just putting this out to make friends aware that trusted brands cannot be taken as remaining the same and it is worth investigating fully for yourself.

[Inca]

Oh,very interesting,I have been using Q10 fora few months instead of my French body moisturiser,suddenly I have a very nasty rash under my breasts So maybe ???Legs ok tho ,arms etc...could be just where skin tends to get warm...we have very hot days just now ,a gorgeous Indian Summer..

Thanks for info nanmc...pause for thought.Good luck with some other brand.

[nanmc in reply to Inca]

It isn't just Q10 it seems, reading the evidence other nivea products are also called out. I suspect other brands will contain it as well. So much for small print saying dermatologically approved!

[Inca in reply to nanmc]

Worrying isn't it. Living in France ,I use Roche Posay ,trusting that as they make medical products they are ok. I do find their 'Cicaplast'is excellent for some skin probs. They do an 'itch cream 'too which is safe for newborn babies, 'Lipicar Baume',used it before I was changed to Jakafi when Hydrea stopped working for me. It is available in U K .There is so much to try I know,but are they dermatologically safe.????

[bordeauxgirl]

Hello all of our fellow PV'ers with rashes etc, I have had PV for six years along with what was described as 'Pruritis' ( not sure spelling) and for all of those years have been given every known ointment, cream, UVB light treatment in the hospital, every antihistamines on the market, but to no avail, must have cost thousands . The itching was always horrendous, scratching became a way of life, leaving my legs bleeding. scaring has left my legs looking horrible. Then a light bulb moment hit, my son bought me a herbal ointment containing Hemp extract, within one week the rash eased off, the next week the itching eased off ,now I don't even really know it is there. I must say I live where I can buy this ointment freely. Maybe ' Holland & Barret' or 'Healthspan' can supply it and I realise it is quite expensive, but after 6 years, I would have traded my house for the tin. My dermatologist told me 'oh it's just moisturiser', but when he read the label, it was a different matter !! And NO, I can't have a prescription for it. I suppose because it works and they will not get money in the tills. He said, I guess you won't need another appointment, NO, Physician, I will treat myself. Mind you I don't know what my Haematologist will say , but because of lockdown in UK I haven't seen him since last October 19. Should have been seen every three month , but now on my own as the doctors here don't know enough about our'problem'. Well, that's my story and for me my little miracle.

[nanmc in reply to bordeauxgirl]

Oh dear, not being able to contact your haemotologist by email or telephone at this time is not good. Thanks for the tip will look out for the a lotion with hemp have started using one from Holland and Barrett with rose geranium and my skin is improving.

[Anag]

Dear Nanmc,

Nivea Q10 is the nastiest cream to ever touch my skin. I had an immediate rash outbreak years ago, the very moment I put it on my skin. I washed it off immediately. It burned like crazy. I had never reacted to anything else before!

Important!

Since my ET diagnosis three years ago, I have stopped ALL chemicals in my environment. No more normal store bought cosmetics, cleaners, soaps, no food additives, pesticides, perfumes, GMOs or any industry foods produced or foods bought in plastic. I have completely cleaned my home and body.

Coconut oil and shea butter for the skin are incredible. No more Nivea, Dove, or any other garbage. These lotions are mostly paraffin oil, full of chemical perfumes and preservatives. All that goes into our skin, through our blood stream, creating low grade chronic havoc and gets filtered by the liver. What do You think they do to our bodies long term? And... we have blood cancer. We ask why? Trash everything and go natural. You can also ask a good chemist to prepare all natural, organic lotions and creams for you.

My 26 years eczema problem was gone in 2 months, forever! My fatty liver, incontinence, brain fog, bad breath, bloating, depression, enlarged spleen are all gone! So are 20kg. I’ve also gotten rid of all grains (except rice) and milk products. Beat of all, my ET progression has slowed down and stopped. All we need to do it take the modern life burden off our systems.

These changes took 2 years to do, step by step.

[nanmc in reply to Anag]

I must agree as I try to keep all chemicals to a minimum.

Checking through your previous comments on here I note you have been interested in the reports about coenzyme Q10 and this the same as the main ingredient as in the Nivea product we have had problems with so I for one will be very wary of its use in treating MPNs

[Anag in reply to nanmc]

Firstly, the CoQ10 in Nivea is most probably synthetic. Taking synthetic supplements can lead to toxicity as both my daughter and I had after just one month of Vit B6. We acquired nerve damage in our extremities!

Nevertheless, I believe it’s not the Q10 in the Nivea that’s causing the problem. There are many chemicals in there.

I take CoQ10 from Terra Nova daily for 2.5 years as has my husband and daughter. We only feel benefits. There are studies showing a positive effects for ET patients taken in dosages of 200mg daily. I take 50mg. It gives me energy since it supports my mytochondria in all my cells and I’m able to takes long walks and do light aerobics, which my Anagrelide and ET had robbed me of.

So good that you’ve reduced the chemicals. The chemical and food Industries have their hands around our throats. It’s time we loosened their grip. 🙂

[nanmc in reply to Anag]

Thanks for the clear information.

[gset]

Since my ET diagnosis and having had leg ulcers etc, I became allergic to a number of things used in skin creams, I now have itchy skin possibly just dry and possibly linked to new diagnosis of myleofibrosis. I have found Sukin, an Australian Natural range useful when nothing else helps. I got it abroad in a supermarket and now it is in the UK via numerous places including their own site and Bodykind. This is a review from a magazine about natural products- Sukin has become one of Australia’s favourite natural skin care brands thanks to its low price points, natural, vegan and cruelty-free formulations, and earth-friendly ethos. All its efficacious products are created using high-quality botanical extracts and essential oils, and treat a number of skin issues and concerns. The brand’s favourite skin-loving ingredients include rosehip oil, kale, spirulina, argan oil, acai and goji berry, just to name a few. Hope this might help - itchy skin is so horrible. All the best G

[IrishHiker]

What was the name of the specific ingredient that caused itching?

[nanmc in reply to IrishHiker]

I have refrained from naming a specific drug as the reports I found on the internet are not in my opinion a definite.

A search under these headings 'adverse reaction to nivea' 'problems using Q10 lotion' will give several answers. There several reports from UK and USA . and they quote a few names.

I am not a pharmacist so cannot check on specific ones I do know that in different countries different names can be used.

[Wyebird]

Thank you that is an extremely important discovery.

[IrishHiker]

Thank you fir the lead and information.