Hello John,

l have been thinking exactly the same for the past year having finished chemo/radiotherapy ten years back.Left with neuropathy l blithely sailed along until this itching and heat rash started. It began inside the ear and continues to torment and is now spreading around the body, not all the time but certainly at times everyday.

l put this down to a compromised body from treatment that is tipping over the edge due to advancing age(74) as it increasingly struggles to maintain a sensible equilibrium.Having had major resection of my liver and losing my gallbladder in the process, this might not have helped, along with a lifelong allergy to watches,rings ect as well as penicillin and most drugs.

l am much of the opinion that l am stuck with this since creams, lotions and any potions do not help, but am grateful for an active drug free existence with no medicines whatsoever consumed by my body.l think l can take the itching which only affects me in my waking hours.Keeping busy definitely mitigates the effects, resting raises the effects,but thankfully sleeping is easy and quiet

l take it as just another signpost on my journey through my life,

David

Thank you David for sharing your experience, and like you I feel I can accept and live with the itching. Perhaps we should see it as a reward for surviving something much worse! I’m increasingly convinced that the positive mind-set accounts for sixty per cent of being able to live with the cards we have been dealt, whilst not minimising the wonderful support, scientifically and otherwise, we receive from medics, partners, spouses, family and friends. 
Thank you again, and good luck with now and what’s to come.

John

Thank you David for sharing your experience, and like you I feel I can accept and live with the itching. Perhaps we should see it as a reward for surviving something much worse! I’m increasingly convinced that the positive mind-set accounts for sixty per cent of being able to live with the cards we have been dealt, whilst not minimising the wonderful support, scientifically and otherwise, we receive from medics, partners, spouses, family and friends. 
Thank you again, and good luck with now and what’s to come.

John

Hi Ed, Lucie and David,

I think I may be onto something which may be of interest to you. I will seek some form of confirmation from my cancer medics and GP.

The where and when of bouts of severe itching have alerted me to the possibility of allergy to polyesters. This can apparently start at any age, though older, drier skin can be very susceptible to a later onset of this condition.

I sleep well but usually wake up once in the night with randomly positioned itching which I cool down with a cold damp facecloth.

I usually wake finally, feeling very itchy, though  this usually diminishes dramatically following a shower, which stings but also provides great relief, and daytime, though still itchy, it is nowhere near severe, and I can almost forget about it.

When this started, several months ago, it was a severely itchy head that began the process. (a pillow?)
In the past few days, I have discovered just how much I (and perhaps others?) are surrounded by polyester, especially in beds and bedding. Also, many items of normal day to day clothing contain high percentages of polyester and polymers.

I had been going down the route of thinking the itching was connected to my medications and treatment, but now I’m looking closely at the polyester allergy information.

Cheers 

John

Hi John

If you think that external factors may be responsible for irritatating your sensitised skin. Then wool will also be a culprit along with sweat and getting overheated.Dust from pets can also cause a reaction. Keeping you skin from drying out also helps. Replace soap with emmollient bath oil use moisturising anti itch creams. Keep well hydrated with several pints of fluid a day.I have  All our sheets are cotton or linen. My clothes are 100% cotton except a couple of jumpers which I wear a long sleeved shirt underneath even then my wrists often end up itchy. While the above measures do not completely stop itching they certainly make it less intense. So yes I do think you are onto something worth looking into.

Ed

Thanks Ed for all your interesting and useful information. I wasn’t aware via email that you had responded, hence my delay in acknowledging. Yes, Im sure that polyester isn’t the only protagonist in Itchgate, but must certainly play its part, as must wool.

Im still itching, but not as much or intensely and such tips as yours have clearly been most helpful. I guess by the late 70’s we can’t expect to feel like spring chickens! As someone older said to a while ago “ Growing old is not for the faint hearted.” Wise words, and Ed I’m sure we can at least pat ou4selves on the back for being resilient at least.

John

PS I’ve had Paroxysmal AF for a week now, as well!!

Hi All, 

Through various events and eliminations, it seems like histamines have been playing a major part in my Itchygate! 
A drink of 12% Merlot (a drink not even a glass!) results now in a red and itchy chest and neck. Over recent years I have been a Merlot drinker, and reading up on the effects such, even moderate drinking can eventually have regarding the creation of an unhealthy superabundance of histamine in the ageing body, I’m pretty convinced of its negative effect.

Hi John

Your continuing search seems to have uncovered a very  interesting connection between histamines, alcohol and itchy skin. I seldom drink red wine as more than one small glass gives me a headache and this apparently can be attributed to its high histamine content. I do drink real ale which contains lesser amounts. Apparently cheese contains high amounts too. An enzyme called diamine oxidase (DAO) breaks down the histamine and alcohol itself can interfere with that breakdown process plus trigger the release of more histamine. Thanks very much for posting this invaluable information. While I frequently have periods of abstinence and not noticed any reduction in itchyness. Im going to couple not drinking with not eating cheese and other high histamine containing foods. Will reply in a month to let you know if it makes a difference. I will also ask the oncologist if the immunotherapy drugs I receive are known to stimulate histamine production.

Ed

Thanks Ed for that very clear explanation of the breakdown process and triggering of more histamine.

I will now be taking things easy on the cheese front also. I like real ale too, though apparently Budweiser and Vodka, have least histamine of all!

Will swap notes again in a month, and hopefully others who itch, will find our conversation helpful. It’s bad enough being old and having cancer!! 

Dear Ed and others…

I am a little nervous about sharing what I have to say, just in case I hear back what I don’t want to hear.

Perhaps the severe itching, and more recently bleeding spots and scrapes ( caused by scratching) are a side effect of my regular herceptin treatment?

I have had 95 infusions over five and a half years. My ‘ kryptonite’ as I call it, due to the fact that it has kept the spread of cancerous cells at bay and has allowed me to live a fairly normal and active life.

Ive always thought that any ‘good’ or ‘ bad’ thing should not  be put down to any one event…”It’s never one thing”

and although the histamines, certainly for me, in red wine, can and do trigger an itching event, other things may also  play their part.

Closer ‘magnified’ research by my GP revealed what looks like folliculitis, where red spots surround hair follicles.
This has not yet been confirmed. I also am aware that some itching usually occurs around the area of my arm following where the cannula is inserted, prior to my infusion of herceptin every three weeks.

The itching started several months ago, around the time other things happened too, such as changes and increase in some medication.

I will speak with my oncology team, but am naturally worried that my infusions will be stopped, when the side effects of herceptin may not be the ( sole) cause of the problem at all.

I’d be most grateful to hear the thoughts of both professionals and lay folk, like myself, who may know about or may have had similar experience regarding this matter.

John

Ed and co,

A post script to my previous post. I think, and hope, I have discovered that it’s not Herceptin that brings on the itches. I had a friends reunion last evening when I over-indulged to the tune of two pints of real ale (4%) and three medium glasses of wine. I woke at 5am with the most ferocious whole body itching. I damped if down with a wet face cloth, but can still feel the effects. 
John 

John,

                      2 pints of real ale and 3 glasses of wine would see me falling over and most likely attending a fracture clinic, so l would take the iitching.But lets face it , theres no getting away from thesuggestion that you are just a good time guy---long may it last,

David

Ha! I’ll take that as a compliment David, even though it was a ‘one off’ spread over several hours!