Radiation therapy for severe dermatitis (eczema)??
Ok, so I’ve posted this in a few places to see if some people can help me.
I’ve always had eczema, but always very very mild, and it has gotten a little worse (like when I was 12 just in between elbows and knees, then when I was a little older on my eyelids etc, and then was I was 20 around my mouth etc), but when I got pregnant I ended up with it all over my body.
I went to see a specialist who said 99% of peoples get better when preg, and I was just that 1%. It might be from hormones, it might be from slightly higher skin temperature no body really knows. Basically she told me:
* No soap (only Hamilton’s of QV wash)
* No normal shampoo – Ego hair science has low ph which is good,
* Lots of moisturizer all over my body (very hard to do constantly though as it takes ages to soak in and I can’t stand there naked for 30 mins, and DH is at work so I can’t do my back anyway which is always really itchy
* 3 min lukewarm, showers (this it the one I’m bad at, cos I get sore muscles and a nice shower is the only thing that makes me feel better, or when I’m stressed or unhappy)
* No dishes (had to buy 2 dishwashers)
* No cleaning products etc
* Wear cotton gloves, even to do paperwork etc
* lots and lots of corticosteroid cream
Anyway, I managed to get rid of it from everywhere but 2 fingertips on my right hand. I left it at that cos I was very busy at the end of my preg and my late FIL was just getting sick etc, and I felt it was manageable.
Anyway, I went back to the same dermatologist in April of this year, saying I just can’t get rid of it, but now it has spread all over my right hand, and I still get it intermittently on my whole body (my back, arms, nipples, even between my legs). She said keep trying the same stuff, and come back in 6 weeks if it isn’t gone. It wasn’t, but my FIL was back in hospital then so I didn’t go back to see her, instead I just went to my GP for stronger stuff. And also the dermatolgist didn't have the best bedside manner and just kept telling me to keep going and avoid all this stuff and wasn't very helpful for realising its not always possible when you have a newborn?!
Anyway, it’s still there now, and driving me crazy. Finally went to see a different dermatologist yesterday (luckily my Dr got my in the next day, cos they wanted me to wait until end of Nov).
He was really good, and even said you are a young mum with a 7 month old and you just can’t live like this. He also said I have terribly eczema (apparently sever non-responsive dermatitis of the hand), basically a really bad case. Apparently I’m on the 2nd strongest cream you can get in Australia (about to try the strongest), but he said that wont fix the problem, just make the symptoms a little better. Oh, and he took a photo it was so bad.. maybe I’ll be one of those famous freaks on the internet with funny problems?? :)
Anyway, I am having patch testing done in 3 weeks time to try and identify some of the causes (200 allergens applied to my back, and can’t bathe for a week, boy it will be fun!), but he said my only option is to try the most radical treatment ‘cos nothing else is working – radiation therapy (x-rays) to my hand.
Just wondering if anyone has ever tried this treatment, or heard of anyone who has tried it??
Don’t know much about it, but will probably be starting it in November, ‘cos I can’t get back to see the dermatologist until mid October.
Anyway, from what I can gather from various medical sites, it will be similar treatment to radiation treatment for cancer… Lots of wonderful side effects:
:
• Fatigue and malaise
• Low blood counts
• Difficulty or pain swallowing
• Erythema
• Edema
• The shedding or sloughing-off of the outer layer of skin (desquamation)
• Increased skin pigment (hyperpigmentation)
• Atrophy
• Skin itching (pruritus)
• Skin pain
• Changes in taste
• Anorexia
• Nausea
• Vomiting
• Hair loss
• Increased susceptibility to infection
• Fetal damage (in a pregnant woman)
Anyway, I guess its for the shedding of skin hat they want me to have it. Also can’t be pregnant, so looks like TTC next month is off the cards.
I’m pretty upset today.. Finally coming to the realization that this is pretty bad, and its quite likely I will live with this for the rest of my life. I am just so miserable from this eczema. Can’t was any dishes, can barely make dinner, can’t clean up anything, can’t bathe the baby, try to avoid changing nappies, it even hurts just to hold him when my hands are having a bad flare up, which just goes in cycles.
Even just the air against it hurts, and they are so itchy. I wake up at night biting my hands or ripping and them with my good hand, and they are normally bleeding when I wake up in the morning.
Gosh it’s depressing… and I know there are a lot worse things out there to have, and it could be a lot worse, but it’s just still a hard life to have, especially when you have a baby.
Anyway, sorry for my rant!
But if anyone can help me with treatment options/advice, I would be more appreciative.
