Itchy neurofibromas

Obviously I've always had numerous neurofibromas, as this is really common in neufibromatosis patients. But recently I have developed many more, and they're always itchy. Is this something that I should get checked out?

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Izziiee go and get it checked at your GP don't ignore it

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This is very common in NF. Some people find anti histamines helpful. Try not to get overheated, maybe try a cooling shower or compresses. If it's really distressing then you can see your doctor but honestly other than perhaps giving you a prescription anti histamine there isn't much they can do about it. It just goes part and parcel with the tumor growth. Dermal neurofibromas virtually never become malignant.

If you find you are getting a lot of tumors you could always have some of them removed.

Cindy

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do they get even more itchy in the summer?

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I use an anti itch type cream sometimes, sometimes clothes rub on them and irritate them, and I cover the spot with a little bandage til it calms down.

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Good morning, I've noticed mine usally itch when new ones start to form.
that said i believe it's normal.

Eddie

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I recently posted this same response in another thread:

Since I've been taking Vitamin D (5,000 iu) on a daily basis, I have had no itching. Research has shown that individuals with NF have a vitamin D deficiency, but they have not yet figured out why that is the case (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2563168/). With this said, you may want to start boosting your intake. The standard over-the-counter multi-vitamins do not offer you what you need, therefore you should purchase some directly.

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I also have itchy with this diease and i started using Eucerin it is a lotion and it help use it everyday and it take way some of the itching but as know the tumor and the itching is part of the itching so i hope this helps you out .I have tumor inside my arm i can feel them and that hurt like crab if u hit your arm on something or some hit you on the arm it hurts .But my advice is to the you all who has Nf1,2 use this type of the lotion

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I was told that they itch when the tumors are growning. I have also been told that pregancey/menopause and ones early teens is a HUGE time for the sucker to grow. Topical cream don't do much for me as it is the growths under the skin that bug me but the meds for that wack me out

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HI wayne, how much do you take and any particular brand ? Great info!

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This would vary by each individual. To be safe and accurate, you would need a blood test to determine what proper dosage you should be taking; this would allow the doctor to check your serum 25(OH)D level. The below statement is from the Institute of Medicine (IOM). I started with 5,000 IU, but I may learn that I need more. I'm actually scheduled for blood work this afternoon.

"The IOM further recommended that serum 25(OH)D levels of 20ng/mL (= 50 nmol/L) is adequate, and levels > 50ng/mL (= 125 nmol/L) could have potential adverse effects."

Note, the study that I referenced in my earlier post determined that patients with NF1 were were below average (14.0 (1.6) ng/mL).
I do not know what will work to reduce the growth of these tumors, but various studies discuss the use of Vitamin D and/or Bio30 Propolis. I'm having a blood test today because I want to make sure that I'm taking enough vitamin D. I will start the Bio30 Propolis today. Next week I'll be having the ED surgery done in New York (Dr. Weinberg) to have all of my existing tumors removed, so my hope is that sticking to a strict regiment of vitamin D and Bio30 Propolis would help keep the new growths down. Only time will tell. And prayer.

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thank you Wayne, I'll have to look into the propolis Bio30, Use to use propolis for my kids when they were sick, bee pollen , not sure if the bio30 is the same..The tincture was not too tasty..lol...Anyway...would do it if it kept the fibromas away..Good luck with Dr. Weinberg..Let us know how you make out. I am sure you are very excited..I sure would be...

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Itching is apart of NF, I never heard of it when tumors are growing, but that makes sense. Anyway my daughter takes 2 different anti hiss. 4 times a day and sometimes it don't help. It's hard to tell a 4 yr old not to itch and then pick a t it.

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After all these years i just started getting my itchy spells, I only get the spells at night time, was wondering if Cortizone 10 plus would be any help.
Thank you.

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HI THERE
MY NAME IS NANCY AND I ALSO HAVE NF--AND YES!! VERY DRY SKIN AND ITCHY NEUROFIBROMAS! I USE LOTION BY THE GALLONS I HAVE FOUND ONE THAT REALLY HELPS A LOT IT IS CALLED-- ( I AM OUT RIGHT NOW--BUT YOU CAN GET IT AT WALLMART, MEIJERS IT STARTS WITH A SYRNAC I THINK THAT IS THE NAME IT IS KIND OF PRICEY BUT WELL WORTH IT--EUCERIN ALSO IS VERY HELPFUL
NANCY OLIVER

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