Hi all.

Just wanted to share what Alan is now trying for his psoriasis. He's covered up to his face. We've tried the laser, (worked the first time) did nothing this time so we stopped.

Of course clobetasol did nothing so that's over. He can't keep taking prednisone for the rest of his life.

So I stumbled upon a product (don't laugh) on the internet called Toe Juice. Just google it and you'll learn all about it. They have many videos on youtube and that's why we decided to try it. It was ultimately developed 40 years ago for athlete's foot but it seemed to work on excema and other skin conditions and sometimes psoriasis so we are giving it a try.

In Alan's case, it's going down layer by layer. He had THICK lesions that would turn white and flake all over the place. This is a clear liquid that you just pour into your hands and just wipe it on wherever you have any skin problems. In Alan's case I just put it everywhere.

For 4 days now we have been doing this twice a day. It evaporates very quickly so in 30 seconds you put coco butter or shea butter all over.

All I can say is it's still too soon but I don't have any flakes on my couches anymore. The cocobutter moisturizes and the the Toe Juice, which contains Dermavine, well, it's still too soon to tell.

Believe me, I'll update if this stuff works. Because this is auto-immune and he's not a candidate for embrel or the other biologics, well, there is nothing left to try.

He's quite disgusted and says he looks like a leper. Can't blame him. Stress make sit works obviously.

So wish us luck and we'll see what happens.

Will update you all

Melody

Hi all. I'm back with a really good story. I also posted this on the Peripheral Neuropathy forum because it has to do with IVIG. Oh, the Toe Juice did NOTHING.

It's been about 7 years or so ago when Alan's neuro put him on IVIG for what she thought he might have that was causing his peripheral neuropathy. She said 'You might have CIDP so let's try IVIG". I remember asking her "will this help with the pain?" and she said "It just might". LIES!!

Anyway he did the IVIG for maybe two years or so every month. The nurse would come to the house, he'd be asleep for the whole thing and he's wake up and we really saw no progress so after two years it was stopped.

During the time BEFORE, Alan had developed psoriasis. Various little patches here and there and clobetasol took care of it.

Well!!! after the IVIG, and it began very slowly, his psoriasis began a flare up like you can't imagine. It got so bad that the clobetasol (and other topicals) failed to do a thing.

So he tried the laser at the dermatologist. Well!!! wonder of wonders, it cleared up completely. He used a compound cream twice a day and I could not believe it was ALL gone. He looked like a different man.

His doctor (our doctor) Dr. Fred said 'it will come back and when it does it will come back WITH A VENGEANCE" The dermatologist had said the same thing but what the heck did I know. I saw him with clear skin and I thought. Wow, we have a miracle here.

Slowly but sure it came back WITH A VENGEANCE, and Alan went back for the same laser treatment. IT DID NOTHING. Even Dr. Fred shook his head and said "oh Alan, you have some case going on here". We tried Lotions, change of diet, anti inflammatory this and that. I think he took steroids for a while and while that helped a bit, NOTHING really did anything.

Recently I looked up CAUSE OF PSORIASIS and I stumbled upon the info that it can be caused by a mutation of the Card 14 gene in a person's body.

So I said 'what the heck could have triggered this gene"? Oh, Alan has psoriatic arthritis also. BINGO!!!! LIGHTBULB MOMENT.

Earlier today I googled "Can IVIG cause psoriasis to get worse"?

The answers that came up on various forums was extremely informative. It seems that in some people yes indeed it does do that.

And then I said "wait a minute", all these treatments for psoriasis and psoriatic arthritis well, they suppress the immune system. That's how they clear up the psoriasis.

So what did IVIG do? BOOST his immune system.

So in my humble opinion (very humble believe me), while IVIG can help many people, god forbid they have some gene for something because it can be a trigger. The neurologist at the time had to be brain dead to not tell us this.

Right now he looks like the creature from the black lagoon. It's THAT bad.

So we put lotion and we already knew he had a Vitamin D deficiency which has been rectified. and we have tried this and that. I even bought a product called Toe Juice off the internet because it was supposed to help exfoliate people with skin conditions. It did NOTHING.

And I went on youtube and typed in Severe Psoriasis, and there are people who use knives to scrape the scales off of their skin. I kid you not. And there is one guy who was put on a Clinical Trial of Stelara and OMG, when he stopped taking it (he had had psoriatic arthritis and a 10 percent case of psoriasis on his body), well after he stopped the Stelara, he developed 6 different types of psoriasis. They have a video of him up on youtube. He is so not well today. He is in bed. And his WHOLE body has 6 different types of psoriasis and Johnson and johnson won't answer his calls.

Last night I put lotion on his arm and wrapped it up in Saran Wrap because we saw a show on Dr. Oz and he said it would soften the scales. It did do that but so what? He just took a hot shower and I think he scared himself when he came out of the shower. Hot water makes it looks MUCH WORSE. All over his knees and thighs and calves. Thank god so far, not his face. He did have patches under his eye once but for whatever reason, they went away. I have never seen cases (like they show on youtube) of people with these skin conditions)

All comments are welcome, believe me. I wonder if stem cell therapy would work on people with psoriasis. I'm going to do some digging.

Melody

I hear you on how frustrating psoriasis can be! I have it all over and, like your husband, also have a vitamin D deficiency, one that is less than half of where it should be. My nurse told me that that is a big contributor in the psoriasis factor, and when other patients of hers get their D up, their psoriasis disappears. Unfortunately, raising the D level takes a while, as you know, and I haven't been able to get it past 25 (partially due to the fact that I don't always remember to take my pills and largely due to the fact that I live up North!). Someone on these boards mentioned that there is a vitamin D cream, and I think I will try that next. Please keep us posted if anything does work for your husband!

Hi Stephie: Well the latest thing that he is doing twice a day is applying Cetaphil Cream on it. When he first started, I thought it was working. It's been a while now. When he gets out of the shower and dries off, he applies the cream. His patches are bright red after a shower. But one thing has happened. They don't turn white anymore (probably the cream). But he sheds all over the place. All I do is sweep sweep up those scales.

I don't think there is anything else left to try. We were told it gets worse during the winter time and tomorrow it's going to be below zero here in NY with the wind chill. He's not going out and thankfully we have heat but that doesn't make it change anything. At least he's applying cream so that's good for dry skin anyway.

Take care,

Melody

Hi MelodyL

A couple of thoughts:

I stumbled upon the info that it can be caused by a mutation of the Card 14 gene in a person's body.

Abnormal forms of the protein coded for by the CARD14 gene have been linked to psoriasis. These proteins are expressed on various kinds of skin cells. There is a very technical but free-access account of this work here: http://www.ncbi.nlm.nih.gov/pubmed/22521418 .

I wonder if stem cell therapy would work on people with psoriasis.

My understanding of current biomedical knowledge suggests that stem cell therapy would not be effective for people with psoriasis. It can be effective for people with some blood cell cancers (it is called a bone marrow transplant in this context).

What is done for these patients is to treat them with a very high dose of a chemotherapeutic, which will kill all of the stem cells in the bone marrow which make blood cells (including those which make the cancerous blood cells).

A bone marrow transplant from a healthy donor will supply healthy stem cells which will make healthy blood cells.

As far as I know there is not yet any way of doing the equivalent for people with CARD14 mutations - there is no current way of selectively killing the various kinds of skin cells which make the abnormal form of CARD14 and replacing them with healthy skin cells.

Apologies if this is a bit technical.

Hi Melody,

I also have psoriatic arthritis and skin psoriasis.
My skin psoriasis is very limited, so far, to my elbow and a couple of nails.
I am very lucky, I know.

Many people with moderate to severe skin psoriasis (Ps) are reporting amazing results with a 1:1 mixture of (liquid) glycerin and alcohol-free witch hazel. They mix this solution, place it in a spray bottle and spray it on 3-4 times a day. This is the most popular CAM approach right now. Many excellent testimonials to this approach.

Others are doing a similar mixture with raw apple cider vinegar and glycerin at the same 1:1 mix.

Some are very happy with the skin healing they are getting from applying coconut oil directly to the Ps lesions.

Many swear by a paleo diet.

Many meds used for psoriatic arthritis (PsA) tend to aggravate the skin Ps.
These can include NSAIDs, Plaquenil and others.

I have not been around NeuroTalk for awhile, so I don't know what Alan has tried. The remedies I have mentioned above are some of the newest and "greatest" natural approaches within a large international group of people living with Ps and PsA.

There is a new med people like. it is not a "biologic" type, it is called Otezla.
Many swear it clears up their skin well.

I hope I have mentioned something helpful.

To Our Healing,
DejaVu

Hi there.

Alan has used it all. Had the laser thing done twice. Worked the first time. Did nothing the second time. We have tried every cream on the market and some that are NOT on the market.

Nothing works. If he is stressed it comes out even more. Since he has neuropathy pain all the time, that is his stressor.

Nothing to be done. Some times its a bit better, sometimes I find scales all over the place.


Ah well. Thanks much for replying and trying to help.

Mel

Mel, I have heard anecdotally of good results for psoriasis with application of topical Hemp Seed Oil.

Adding to what Lara wrote, there is some evidence that cannabinoids can help; http://www.ncbi.nlm.nih.gov/pubmed/17157480 .

Tried hemp seed oil. Did nothing. It was from a reputable supplier too. I really had high hopes then. Did nothing.

But as soon as something new comes out, we try it. Alan won't go near the biologics because of side effects and therr is s guy on youtube who tried Humira (I think it wad that one) but when he went off it, he developed all six variations iof psoriasis. That has never happened before
I saw the guy's bio on youtube. OMG

melody