Dealing with itchy bumps

[brandy]

Hi Gloria,

Was your dermatologist a "small frame" kind of guy? It is kind of hard imagining a man even considering taking fosomax. It seems like a guy could do some gym time and pretty much maintain. Brandy

[mbeezie]

Hi Gloria and other itchy PP:

I have loosely followed this thread since it started and empathize with the itching and hives. For months I have had itching but no rash. This fall it became evident that it is urticaria as I now get hives like clockwork after my daily dose of allegra wears off. A single dose of allegra works to reduce the hives. My sister, who also has histamine issues, had chronic urticaria for 3 years. She thought she was doomed to have it forever but it did resolve. She had been on HRT and noticed significant improvement when she got off of it, but hormones were the not the complete picture. She follows a very restricted diet (just a few foods that are low histamine and low salicylate) to help control symptoms. I also have a brother who get unexplained hives on occassion.

There is evidence to support that CU has a genetic link caused by a defect in one of the 2 enzymes that clear histamine, histamine n methyltransferase. http://allergy.ajoumc.or.kr/upload/bbs/195.pdf As this article points out there is an association with aspirin sensitivity (and we all are, as was my mother) and I know you are too Gloria. In addition to low histamine foods you may also pay attention to reducing salicylates . . . . depressing, I know. http://salicylatesensitivity.com/about/food-guide/

I believe this genetic weakness contibuted to the horrific mastocytosis-like symptoms I experienced after my flu-shot. In addition to not being able to adequatley clear histamine, I had a cytokine storm that caused increase release of histamine. Add in some gut damage and a reduction in DAO, the other enzyme, and I was literally swimming in extra histamine. My gut has returned to normal and I no longer get the other symptoms of histamine overload, but I am left with the genetic problem to deal with forever. I have not seen a dermatologist as I know I have more knowledge than any of them. I may make my annual appointment with my allergist who understands my case, but other than steroid cream, diet and anti-histamines, there is not really much else I can do.

I empathize with the chronic itch and hives and pray for remission for all of us.

Mary Beth

[Zizzle]

I'm now taking a Claritin Readitab every single day with no noticeable side effects, except NORMANS! Yay!!!!!!!!
Of course my rash continues to advance, now spreading to my outer thighs, and my cuticles and fingertips are looking progressively more dry and knarly. I think I have the beginnings of "mechanics hands" as seen in Dermatomyositis. Hubby still hasn't completed the health insurance process at his new job. Otherwise, I would have at least seen my dermatologist by now!!

The Claritin doesn't help the itch much, but I'm committed to staying on it anyway. I had my first serious workout in months yesterday -- 35 minutes of run/walk intervals on the treadmill followed by weights and abs. Boy was my rash ANGRY!! And I got the usual sweat-filled prickly-heat bumps and hives on my abdomen too. I decided the best course of action was a loofah exfoliation in the shower followed by massive moisturization. I rubbed in coconut oil while still wet to keep the moisture in, then followed that with Aquaphor ointment over the rash areas. It felt great for several hours, then I had to reapply. I'm beginning to follow advice for eczema sufferers -- the lack of moisture is really a huge a problem, especially as we head into winter. I'm even showering less often.

Now I'm looking for a totally hypo-allergenic, no petroleum, no mineral oil, no fragrance, no parabens thick lotion to use on my rash. I need an INTENSE moisturing cream. Any suggestions out there? Maybe something with coconut cream base, shea butter, or cocoa butter?? I love my coconut oil, but I'm wondering if it adds moisture to the skin. I suspect it locks moisture in, but may not be supplying extra moisture. Any moisturizing advice??

Anyway, I think I'm also noticing foods that "turn on" my rash, meaning it gets red, hot and insanely itchy within 10-20 minutes of consurming certain foods. So far, it seems my MRT reactive foods may be the culprits. I've noticed increased itching after eating potatoes, avocado, bananas, Yellow #5 and Blue #1 (Skittles and other GF Halloween candy). So I've sworn off these foods and seem to getting closer to Paleo by the minute. I still can't seem to cut out corn chips though. Sigh.

I've also noticed that the outer-thigh rash may be a reaction to grommets on jeans. I am allergic to nickel, and this is where this same rash started 8 years ago (it lasted 10 months then). I'm remembering to paint nail polish on the exposed metal of my pants, but I really wish I could find nickel free JEANS! This makes me wonder if I might have a systemic nickel allergy (or at least systemic symptoms from time-to-time, maybe when I'm overloaded with nickel? Nickel skin reactions are notoriously slow to heal -- they can last weeks. Makes me think I should get IgE allergy (maybe RAST?) testing to see how severe my allergy is, and test other substances too?

I also remember that my first rash started in late October when I was post-partum. I blamed hormones, but maybe it was something about October? Leaf mold?? I was allergic to molds as a child. Should I be tested again?


I am disgusted by how little is known about Amyopathic (skin-only) Dermatomyositis, assuming that's what I have. I have 6 of the 7 skin manifestations, so I'm pretty confident abou the dx now. Most suspect a viral origin (EBV, Coxackie and others are implicated), and yet the primary treatment is steroids. Many people with DM have cancer, but no one knows what signs suggest a cancer is to blame. There is a 40% likelihood of developing interstitial lung disease which causes permanent scarring of the lungs. Will I? There are female cases cured by estrogen suppression (Tamoxifen), so is it estrogen-linked or not?? There are a couple of people cured by vegan/paleo diets -- but I'm so close...is meat eating holding back my remission? I need answers, and sadly I feel like I don't have a medical home -- I doctor who gets it and can coordinate ALL my care. Sigh.

So I scratch and moisturize.

[Stanz]

You've worked so hard, don't give up. We all learn something every day and our providers are sorely lacking. I'm liking my new MD thus far, even tho she looks about 12. Younger the better for doctors, IMO, there is a growing backlash against the drug companies according to her experience in Med School.

[Lesley]

I'm even showering less often.

I have been battling what I term the itchy scratchies for a few years now. Horrible itching that makes me scratch until I draw blood. It doesn't improve if I don't scratch during the day. I scratch in my sleep. I thought on wearing gloves, like we put on babies, but I cannot stand for my extremities being covered when I am asleep.
I stopped showering more than 2x a week. I do what my friend calls "washing up as far as possible, down as far as possible, and then I wash possible".
I have also used a filter in my shower (I have to order a new one, and maybe not using it is contributing to my current attack of i/s).

Coconut oil as a moisturizer - it actually dries my skin. I can eat it, but not get it on my skin.
The only products I use are from the small business belonging to a friend of mine out of Arizona. She makes wonderful stuff, using all the very latest and best ingredients, for WAY less than available in the market, and NO horrible stuff. She makes a body cream that I love called "crantart". I have tried others she makes, but this is the only one that seems to really keep the moisture in - for me. She has worked with me to find and actually make products to moisturize my Sahara dry skin, and has succeeded in helping me balance my facial skin, and my body skin when I use a filtered shower and apply crantart cream immediately. She will always make you something specially for you.
There is a forum where you can ask questions.
If you want to know the name message me.

I take Zyrtec. Seems to be the best one for me. It helps me keep the i/s under control.

[Gabes-Apg]

zizzle- have you tried lanolin? or rose hip oil?

Gloria - how is your skin going? did going on the trip make it worse? did you get any new family history insights?


i found a new a product, it is a paw paw ointment that is soy free. I have used this on my fingers where the skin had been peeling to bleeding all around my nails (kidney and liver function are struggling) this has worked really well, all fixed within 2 weeks. prior to that i had about 4 fingers that i had put bandaids on all day at work so i didnt bump them or make the skin peel more.
it has cocoa butter, beeswax, silica, macadamia oil, rice bran wax, paw paw

maybe you might have to make your own?? based on the ingredients that you can tolerate?

[Zizzle]

Gabes,
My cuticles are pink, swollen, and now dry and cracking. Is this a common symptom for MCers? I thought it was entirely related to the Dermatomyositis skin manifestations. I so want it to be caused by something else!

[Gabes-Apg]

thats what mine were like, spending the day typing was painful! and if I bumped it on my key, they would bleed as well

homeopaths and naturopaths etc will tell you it is an indicator of poor liver and or kidney function.

the only times i have had it really bad is; a) when the leaky gut was bad (which affects liver function) and b) the past couple of months where my kidney function is quite poor.

i was using the lanolin lip balm on my fingers and they would slowly heal (about 4 weeks). This paw paw lip balm that is soy free has been the miracle cure! within 2 week of putting it on morning and night my fingers are 'near perfect' the best they have been in over 4 - 5 years.
the paw paw balm is safe for babies and breast feeding it is the first soy free paw paw product i have seen. funny enough none of the health food stores have had one since i went soy free and this one was in the supermarket, the best $5.75 i have spent!

if you cant find anything equivalent over there let me know and i will send you some.

[Gabes-Apg]

zizzle
the paw paw ointment I use is available in the USA. My ability to search for the product in USA retailers is limited so you might be able to get it cheaper at another outlet

SORRY _ posted the wrong link - i have edited this post

THIS is the identical product to the one i got.
http://www.amazon.com/Paw-Lip-Balm-10g/ ... w+ointment




this one might we worth checking outhttp://www.amazon.com/Healthy-Care-Paw-Ointmen ... w+ointment
- i couldnt check the ingredients via amazon... i will search for the manufacturers site now

[Gloria]

Another update:

My skin is much better, though not completely free of the itchy spots. I still apply cortisone cream in the morning and evening. I've been sleeping better and don't wake up itching like mad, but sometimes put cream on in the middle of the night. I've had the itching for 8 weeks and am beginning to wonder if it will ever completely clear up. My scalp still has a few bumps, but they don't itch very much.

The two Claritin pills I take daily help and the cortisone cream provides temporary relief. To reduce dryness, I've started to apply Neutrogena sesame oil. I'm also using Farmhouse shea butter lotion and liquid soap which I bought on vacation. It's great and I'll probably order more.

I think this is a mast cell reaction. I was doing some experimenting with foods shortly before the torso itching started, though my scalp had been itching in the summer. I tested Boar's Head bratwurst with mustard (mustard is high in histamines). I tested a couple of cherry tomatoes, some blueberries, and homemade lime jello. Then I added some leftover lemon juice to another batch of lime jello. I also had been eating more dried mangoes than before. Although this would be nothing unusual for most people, it probably overloaded my system with histamines. I've stopped eating the tested foods and have cut way back on the dried mangoes, plus I wash them first. I'm testing applesauce to rotate with the mangoes. My BMs have been pretty normal during this time, however, and I haven't had excess mouth sores - my immediate signal of a reaction.

It's been interesting to see how slow the bumps are to recede. I'm starting to understand why it takes a long time for the gut to heal. Histamines in the body must remain for quite a while, even while taking an antihistamine or two. I tried taking diphenhydramine, a third antihistamine, but had D the next morning.

Mary Beth,
I'm not sure if I have a salicylate intolerance. My MRT test showed I was non-reactive to it. You are probably recalling my intolerance to Pepto Bismol, which has Bismuth subsalicylate. When I last checked salicylate foods, I seemed to tolerate many of them, but that was when I tolerated a lot more foods. I'll ponder your suggestion, but I feel like I am unable to eliminate any more foods. I noticed that almonds are very high in salicylates, for example. I'm hoping I can get this under control by reducing the histamine in my diet. There is so much conflicting information about histamines in foods. It makes it hard to know which food is OK and which is not.

Gabes,
I think the vacation probably exacerbated the problem because I spent so much time sitting in the car, pressing my backside against the seat. Heat seems to aggravate it. But it was a great vacation, and we got to meet the Potty People ambassador, too. No pictures to share, though.

I stopped at a state archives and a state historical society and found a little bit of information. Not as much as I would have liked, but that's the way genealogy research goes, as you probably know.

Zizzle,
It's great that Claritin is helping your MC. FWIW, I think your skin reaction is due to mast cells. It seems that antihistamines don't reduce skin inflammation as quickly as they help the gut. This is my own observation, of course.

Gloria

[Gabes-Apg]

interesting article about leaky gut
in doing some reading about leaky gut / liver function i came across this website

not sure if i had seen this before - but if i took more notice this time as it mentioned 'mast cells'
(highlight is mine)

Summary of Common Causes of Leaky Gut Syndrome:

Consumption of allergenic foods
For infants, premature birth
Inflammatory Bowel Disease
Radiation therapy
Alcohol consumption (depletes N-acetyl glucosamine)
Non-steroidal anti-inflammatory disease (also depletes N-acetyl glucosamine)
Secretory IgA deficiency (can be due to zinc or vitamin A insufficiency)
Oral and parenteral corticosteroids (prednisone, Medrol, cortisone, etc.)
Eating foods that are not compatible with heritage or blood serotype
Deficiencies of amino acids that support the gastrointestinal lining (glutamine, arginine, taurine, BCAA, etc.)
Zinc or vitamin A deficiency
Digestive tract infections (bacteria, yeast, parasites, viruses)
Bioflavonoid insufficiency leading to unstable mast cells and subsequent degranulation
Excessive stress
Poor digestion
Starvation
Antibiotics
Excessive sugar leading to yeast and bacterial overgrowth
HIV infection

http://www.drkaslow.com/html/leaky_gut.html

[Gabes-Apg]

Gloria
I think genology research success is mostly to do with luck than anything else!!

re the rash - histamines - leaky gut
Given how long you had chronic symptoms i could not even guess how long it would take the gut to heal.
re the contradicting articles about high and low histamine foods, the best assessment is you, listen to your body. for me, once a food touches my mouth, within seconds i know if it is good or bad histamine wise. (itchyness tongue swelling)

the BP meds i am taking are causing some constipation, so today i tried some apple, (organic peeled), had a small piece no itchy mouth was my first test, all good, so I nibbled a small amount and there has been no bloating, gas, cramping, 10 hours later no poop issues. !! woo hoo.
my first piece of fruit in almost three years!!

[wonderwoman]

Zizzle & others,
Wellness Mamma gives this recipe for homemade body butter in her newsletter today. A great site for Health and Natural Living.

http://wellnessmama.com/6544/whipped-bo ... er-recipe/

Whipped Body Butter Recipe
An easy DIY recipe for homemade cloud-like body butter that is excellent for any skin type and completely natural.
Author: Wellness Mama
Recipe type: Beauty
Ingredients
½ cup Shea Butter
½ cup Cocoa Butter or Mango Butter
½ cup Coconut Oil
½ cup light oil like almond, olive or jajoba
Optional: Essential Oils for scent- I like using 10-30 drops depending on the essential oils used. Peppermint and Citrus/Lavender and favorites at our house.
Instructions
In a double boiler or glass bowl, combine all ingredients except essential oils.
Bring to medium heat and stir constantly until all ingredients are melted.
Remove from heat and let cool slightly.
Move to fridge and let cool another 1 hour or until starting to harden but still somewhat soft.
Use a hand mixer to whip for 10 minutes until fluffy.
Return to fridge for 10-15 minutes to set.
Store in a glass jar with a lid and use as you would regular lotion or body butter. If your home stays above 75 degrees, it may soften and need to be kept at the fridge, but it will stay whipped at a temperature lower than that.
Enjoy!

[Zizzle]

Charlotte,
That is EXACTLY the kind of product I'm looking for. Now to track down the raw ingredients. Thanks!!!

Interestingly, I joined a Facebook group for Dermatomyositis, and one one tip they recommend is Coconut Oil, reapplied often, for the itchy rash. I knew I was on to something!! Most take an antihistamine too. I doubt any appreciate a relationship between this disease and mast cells.

[Zizzle]

I just made the body butter!! I just happened to have coconut oil, jojoba oil, olive oil, and a stick of cocoa butter at home. It's gonna be great!!