IVIG and psoriasis
 

Hi everyone.

Sorry it's been so long but Alan keeps me hopping believe me. As some of you may recall, 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 had it 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.

I'm going to bring this up on the psoriasis forum (if there is one). Take care all.

comments are welcome.

Melodyu

It's possible. I had my genome done and I have the psoriasis gene but no psoriasis that I know of. Perhaps he should try one of the TNF inhibitors such as Stelara?

Do me a favor, go on youtube and type in "Guy with bad side effects from Stelara". You won't believe what happened to the guy. I don't know if I'm allowed to put it on this thread so go and see if you can find it. The guy was a young man with psoriatic arthritis and a little bit of psoriasis. They put him on Stelara. When he went off (I think he was on for one year), his whole body erupted with 6 types of psoriasis. He had plaque psoriasis, gutate psoriasis, pustular psoriasis, etc. etc. He has tried contacting Johnson and Johnson and they have not replied.

I watched the video and showed it to Alan who turned white as a ghost whenhe saw what the guy's body looks like now.

The guy has a website, I think it's called SaveJoe or something like that. It's all about what Stelara did to him.

These drugs are going to kill us all.

Just my humble opinion and today I'm humble

Melody

I can't imagine the IVIG had anything to do with this...7 years later! The antibodies in IVIG only live for about 21 days, so impossible for them to have an impact that far down the road.

I may not have read your post correctly, but it seems the Psoriasis came BEFORE the IVIG treatment...so I don't know how it would have 'triggered' it, after the fact.

Psoriatic arthritis is an autoimmune process. Therefore, any illness, infection, trauma, injury, or something/anything that causes an immune response can 'trigger' a flare of psoriatic arthritis and psoriasis.

And, to elaborate--
 

--IVIg is not really an immune booster--it is an immune regulator, trying to displace autoantibodies that attack individual tissue with calmer, more "normal" immunoglobulins that only attack invading pathogens and not "self". This is, of course, why IVIg is used in autoimmune conditions: to calm down the immune response.

I too suspect that the IVIg is not the causative agent of the recurrent psoriasis. There may be many other factors, including the phenomenon that many immune modulating therapies lose some effectiveness over time as the body processes upregulate (the same reason why often in time one needs bigger doses of painkillers to combat pain of a given intensity). I suspect, since many autoimmune conditions wax and wane and "flare" in response to stress and environmental conditions, that something else was occurring, though it may be very difficult to determine just what.

There are several TNF blockers that can be used and Stelara isn't the only one. They can be matched to the person via genomic testing. I carry the gene and if I had psoriasis, Stelara is the match for me, but oddly, I have no symptoms...the gene isn't turned on. We have vitiligo in my family and apparently it is the same gene as the one identified for psoriasis.

Enbrel has been on the market longer and probably has a more established safety profile.

If he has been off IVIG, I doubt that his current issue is associated with the IVIG infusions of the past.

Psoriasis is a bear of a disease, especially with psoriatic arthritis.

Hi, and thanks for all the great info.

The only reason I thought it might be the IVIG that made his psoriasis WORSE was that it got worse soon after he went off, not that it happened now. For the past 5 years or so this guy has been battling psoriasis in a major way.

Something had to trigger this to make it worse. We have had much stress in our lives due to our son's constant threats of suicide every single night. This started YEARS AGO and it was a nightly ritual of phone calls from social workers, from our son, from the police in California. And I noticed that Alan's psoriasis was getting worse and worse.

Perhaps the stress of all that was going on, maybe THAT triggered this Card 14 gene and not the IVIG (which I really did think did it).

I know stress is a tremendous trigger of these cases.

He's afraid to try any of the biologics because of what Celebrex did to him. He took it for 5 days and it landed him in the isolation unit of the hospital. He was covered in a deep rash ALL over his body. His face swelled up like a balloon, and everyone was running around with hazmat suits and I kept saying "Listen he took Celebrex, he's probably allergic, give him some benedryl". No one listened. They called in these specialist and one guy said "Looks like Rocky Mountain Spotted Fever". I was going nuts. FINALLY, after countless blood tests and this and that, some lightbulb must have gone off because they gave him Benedryl and in a few days he was just fine. He was told "NEVER TAKE CELEBREX AGAIN.

And he hasn't. How odd that one med could have some an adverse reaction.

Thanks guys

Melody

I forgot to ask one more thing. Alan had asked me "Do you think stem cell therapy might help me?"

I don't know the answer and where one would get stem cell therapy. What do you all think?

Thanks, Melody

Melody,

Since stress is such a major player in this, have you considered an approach that focuses on reducing it as well as anxiety that accompanies all of this. It can be difficult to break that cycle but it's worth a try. Stress and emotional health are an important part of health and by working on it, can help him heal. Not a quick fix but an important factor.

Hi. I completely agree with you. My husband has severe Neuropathy (that in itself can make a sane person go nuts). Nothing relieves it. Oh, he's tried this and that but NOTHING works and when it hits bad, it hits bad. So there's your stress. And when there is NOTHING that works, well, what can I say. He knows he will be living a life of pain the rest of his life.

He's tried ALL the treatments and had bad reactions so now he's on nothing and copes as best he can. He goes on the computer, plays his games and gets his mind off of EVERYTHING.

Everything else is on ME and you want to talk stress???? lol

But I have boundaries up and I won't let them down. So stress rolls off of my back, but then again, I'm not dealing with the neuropathy pain he deals with every single day of his life.

So many factors are at play here. I wonder if someday, somewhere, someone will come up with SOMETHING that has a one two punch. Knock out the neuropathy and get rid of the psoriasis.

Thanks much

Melody

Melody, I'm sorry to hear about your husband's problems. I have had psoriasis for the past 20 years. It was not a bad case but would appear every summer on my elbows, knees, and hands. My sister had a really bad case of psoriasis, and told me to use Cetaphil. I started using it, and for the past 2 years my psoriasis has not returned. I think Cetaphil might stop the skin from shedding too early which is what it does with psoriasis. It wouldn't hurt for him to try it. I was amazed how it finally disappeared after 20 years. The sun seemed to make mine worse.

I also have the famous "IDIOPATHIC" PN. I use Topricin at night, and it helps with the burning and pain. Hope you and your husband are able to find some peace and be pain free. :hug:

Cetaphil? Well, what do I have to lose? We've tried absolutely everything else, including hemp oil, extra virgin olive oil, shea butter, cocoa butter. Saran wrap did NOTHING but we tried it.

So tomorrow I'll get some Cetaphil. How do you use it? As a wash, do you leave it on or what?

Thanks much,

Melody

I get the big jar because it's a cream, and thicker than the lotion. Just rub it in, it's really not oily. I hope it helps, it really can't hurt at all. I think there's also a Cetaphil soap which you could use as a wash first. I've only used the cream, and I swear by it....good luck:hug:

Okay!!! Cetaphil, big jar, cream!!!!

Will update if this man suddenly loses his scales. lol

and thanks so much
Melody

Hi Mel,
How are you?
I'm sorry to hear about Alan. My step dad has/had psoriasis worst on his head and by his ear. the only thing that worked for him was swimming in the ocean. It helped him a great deal and nothing else was working.

PS. I got married last year and I went to New York City for my honeymoon. My god was it gorgeous! Anyways I went to the Brooklyn Bridge, and as I was looking at it I thought of you and all your stories on the steps of your building with your neighbor. Haha

Oh how wonderful, you got married and came to Brooklyn. We could have gone to Dunkin Donuts and I don't know if you have a Dunkin Donuts where you live but they are FAMOUS for their coffee. I am not a human being till I have my container of Dunkin Donuts in the morning. Keeps me sane. lol

All the best in your new marriage.

Hope you are feeling good.

Melody

Too funny! How big is a container of coffee? You mean a cup? Lol
No I have not seen a Dunkin Donuts here, we have a chain called Crispy Cream which would be equivalent. They sell the most decadent donuts.

Oh, I know all about Crispy Creme Donuts. They are very big here too. Rosie O'Donnell once had a show and she had them on her show. She said they were the BEST donuts she ever ate. After that show the sales of Crispy Creme Donuts went off the charts.


I don't eat donuts (not that I wouldn't like to). But I don't go near any kind of donuts, cookies, malted, milk shakes), no refined or processed stuff.


But before I die, I'm going to have a steak and a calzone because I haven't had a Romanian Tenderloin steak smothered in tomatoes, garlic and lime juice (my mother used to make them and you could DIE from the aroma of them cooking on a grill).


As for the Calzone. Any pizza parlor makes them.


Very fattening. But before I leave this mortal coil, I'm getting a Calzone. I mean, we have to LIVE once in a while right?


rofl.


Are you hungry yet????

lol. Sorry to go off topic.

But we do need to laugh sometime.

I shall update if Alan's psoriasis EVER gets better. Just took a look at it. Now it's turning white. It does that. Then it flakes off.

Haven't been able to buy Cetaphil yet because of the weather and my knees.

Take care, Melody

Now I am salivating! I guess that must mean that i am good at visualisation. Hehe

What do I want to eat before i die...hmmm
I want a 5 kilo lobster smothered in garlic and hot butter with xtra hot butter on side.
I want the best Creme Brulee I have ever had, and to finish off I want a piping hot large Cinnamon bun with extra cinnamon/butter/sugar with a big pot of English Breakfast black tea.

Then I will go quietly.... Hehe:p

Hi all.

First to Rosie:

Bought Cetaphil yesterday. Had to chase Alan around the room to catch him to put it on his arms. He was yelling 'I've tried all these creams, nothing works'. I said "Do you want your corn on the cob with your dinner". His eyes lit up, he stretched out his arms and that was that. I CAN GET HIM WITH FOOD. lol

So I applied it earlier in the day.

I applied it before he went to bed. (We are trying his arms first).

This morning, I left his sleeping and I went out to Dunkin (three steps from my house). I come back and what do I find? Alan is up, showered, and applying the cetaphil and he says "Look, look, it's working'. I said "Really?" It seems it dissolved the scales faster than anything we have used previously. Now I know this is a test, but believe me, if his arms get clear, I'm going out and getting that Tub of Cetaphil for $14.99. (Maybe it's cheaper at Walgreens but since I can't walk very well, I'll settle for the drugstore right around the corner.

So thank you Rose for the tip on Cetaphil. Will update.
------------------------------------------------------------------------

Now on to Aussie

When you began talking about lobster and garlic and butter, the bells went off in my head and now I want THAT. lol
Never had creme brulee.

Have had cinnamon buns (who on earth has never had them).

But alas, being diabetic, I am sticking to my sprouts and greens. They are da bombe. Aussie, you have seen my videos on my greens and stir frys right?

Melody

I would love some lobster right now, and then a dounut!
 

Melody, the Cetaphil will also help if he keeps using it even when the skin is clear of psoriasis. I use it more so at the beginning of summer (that's when mine is worse) and it hasn't come back for the past 2 years. I put it on twice a day. I really think it stops the skin from shedding too early. I'm glad it helped to dissolve the scales. That right there shows how it can help.:grouphug:

I think once the skin is clear he should keep using it because I'm sure it will prevent the scales from coming back, because that's exactly what it did for me.

Rosie:

This is exactly what happened earlier today. I was sleeping on the living room couch when I heard what sounded like someone shoveling snow. I sat up and said "who the hell shovels snow when it's not snowing?" Then I listened and realized it was coming from the bedroom. And the shoveling sound continued.

Alan walks into the living room, sits down at the computer and takes a credit card and immediately starts to (I don't know what the word is) but he was using the credit card to take the scales off AND THEY WERE COMING OFF like crazy. I said "What was that sound in the bedroom?" He said "Are you kidding, I'm shedding like a (put your own word here). I said WHAT??

He said "This cetaphil stuff is the best, but so much of my skin came off I had to use the Carpet Sweeper or you would have killed me". I said "that much came off?" I then went to empty the carpet sweeper in the trash. Yes THAT MUCH came off.

I then looked at what he was doing. He was doing his legs (he did his arms in the bedroom). I have NEVER seen such a clean up as this credit card as it just took all the white scales off. It all went on my carpet and then I got the carpet sweeper and took it all over. Thank god for carpet sweepers and vacuums.

And the look of one of the BIGGEST LESIONS on his thigh was absolutely amazing. It was, how can I put this, as if two layers of skin was taken off. It was getting much smoother.

So whatever is in cetaphil, well, believe me, Alan is a believer. I shall now tell him to use this twice a day.

Will update AND THANKS SO MUCH.

Melody

You are sooooo very welcome Melody. Tell Alan I am so happy for him. Wishing you both a very happy and healthy 2015. :yahoo::Heart:

Some people have really bad reactions to the sodium lauryl sulfate (sodium lauryl ether sulfate (SLES) ) in some Cetaphil products.

It may not be in cream because cream doesn't need to foam and bubble, but I know it's in the wash because I have some in the bathroom. I'm no dermatologist, but I wouldn't use that all the time. :o

There is a site warning of two ingredients in the cream that
may pose problems for some people.

http://www.livestrong.com/article/22...urizing-cream/

This link is from LiveStrong... and I don't like them very much, but I would think other sites may have similar comments.

Another:
http://www.ehow.com/about_6659170_da...ing-cream.html

The problems I see are applying to large areas of the body.
If this product works and continues to work after a while, it might be prudent to do one arm at a time, stop when things look okay and move onto the other arm.

I don't think there are many things that are really safe to apply all over the body all the time these days.

Thank you all for your replies.

Mrs. D. This man looks like a reptile (his words, not mine). This is the first shot he has had (since the laser that used to work and it cleared it all up) but then it came back HORRIBLE.

Nothing worked. Not cocoa butter, not shea butter, not this toe juice stuff, nothing. I could not believe it.

But I will tell him to be careful about using it on his whole body. But Mrs. D. That's where the psoriasis is. ON HIS WHOLE BODY.

His arms, his legs, his buttocks, his calves, his hands. On the top of his head, behind his ears. ALL OVER

I think if this clears up this will change this man's life forever.

Let's hope that there are no side effects and he at least can wear a short sleeve shirt in front of people.

Love ya, Melody
P.S. He's allergic to sulfites and celebrex (which landed him in the hospital). Also he's allergic to bird urine. I have no idea but he once had a wrist band on in the hospital that indicated this. I gather that this is urea right?

When I say he uses the cetaphil as a wash, I had found a Cetaphil bar of soap (in the original package) and he just started using this in the shower. I don't have the packaging any more. But it was a bar of soap. Is this different from the body wash they also offer?

Thanks much

Melody

That I don't know, Mel. Another thing is that some of our ingredients here are different from ingredients where you live. I think most of our soaps and cleansers on the shelves have triclosan in them as well.

That said, if I was Alan and it was helping my skin better than anything else then I'd use it for now too.

It would be a shocking condition to have to deal with and I'm hoping that he can get some relief for a long time.

I think another member mentioned it but I have a friend with this condition and the only thing she ever found that gave her relief was swimming in the ocean. That said, it's a pretty warm ocean here where I live, and it'd be impossible for Alan to do that in the middle of winter up and over where you are.

take care there.

EDITED to add. Just looked at the link Marlene posted. Thanks.

The info on the cleansing bar indicates it's not a Soap. I take it that means it wouldn't have foaming agents in it.
I'll have a good look later when I get time, because we use this brand of product and my daughter has some skin problems so I don't want to keep buying something that might not be good for her skin.

Ingredients
 

You can look up all their products here. I can understand using it to get things under control and then maybe play around with it to see what kind of maintenance protocol works. I cannot imagine what he's been having to deal with for such a long time now. Good luck.


http://www.cetaphil.com/body-cleansers

to all

thanks very much. will check it out.

melody

I think perhaps trying high dose Biotin may help Alan.

I just did a search on it "biotin psoriasis" and found many
sites suggesting this. Some are on other health forums.

Puritan's carries this affordably... either 5mg a day or 7.5mg a day. I have my husband using it too...since he has psoriasis and it seems his is less when he mindful of taking it every day.

So you can Google this and try it, for Alan.

http://lpi.oregonstate.edu/infocenter/vitamins/biotin/
This link has more information on it.

I use it everyday too. It seems to keep my skin less dry.

Thanks so much Mrs. D.

I'm going to look into this.

Much appreciated.

Mel

Mrs. D. Puritan has 5000 mcgs, 60 pills, buy 2 get 3 free for Eleven bucks and change.

This is what you are talking about right? I tried copying and pasting the link to it but it won't come out.

But it says Biotin 5000. They have a 10,000 but I think to start we should get the 5000. That's the one you meant right?

Thanks

Mel

Yes, they have 5000mcg which is 5 mg.
I have the 7.5mg tablet they sometimes
carry. It is a smaller pill and easier
to swallow. I really think it is worth a try.

Puritan pride is having a sale today
Everything is 17 per cent off with free shipping.

Getting the Biotin today.

Thanks so much Mrs. D.

melody

High dose biotin is really safe. So far there is no upper limit set by the FDA, and therefore worth a try. I'd give it 3 months to see any effects. There are studies on PubMed for rare mouth problems--burning mouth--using even higher doses.

~!!!!!
 

Just bought it. Cost me $9.95 for 5 bottles. Now where can you get a better deal. Both of us will be taking this. I'll let you all know if this makes any change in Alan's psoriasis.

Oh I must tell you what happened to me over the past 3 days. I went completely deaf in my right ear. Now I NEVER get sick (colds, flu, infections, etc) because I take my own colloidal silver every single day.

But hey, I went deaf in my right ear. I said "It's either impacted wax, or I have a cold, or "whatever". So I'm doing netti pots, I'm doing Afrin, I'm taking Advil (just in case my TMJ was acting up and I was inflamed). I also bought debrox and did that for 3 days. NOTHING worked. I went to the Peripheral Neuropathy support group meeting in NYC on Thursday night and I had a warm cup of water pressed next to my right ear just in case in was inflamed. I could hear perfectly fine in my left ear by the way.

So I gave it 3 days and I figured I would call my primary care and let him have a look.

But....yesterday I was walking near my house and lo and behold there is an immediate care facility (like an urgent care) and I have NEVER ever went into one of those before. So I said 'what the heck, give it a go"

I walk in and I said "I"m deaf in my right ear and I don't know why". They took my insurance card, told me I had no co-pay (wow, didn't expect that to happen, and they did a brief triage (I announced "I'm not going on any scale, I'm here because I'm DEAF". Everyone laughed.

So they put me in a room and now I'm being questioned. I give a family medical background and then the woman looks me and said "are you have regular menses". After falling off the table I looked at her and said "honey, I'm 67 years ago, there is no menses going on BUT THANK YOU FOR SAYING THAT'. We laughed.

Then the ear business came into business. Doctor walks in and I say "Listen, I'm deaf in my right ear, don't know why, I never catch cold, flu, no green stuff coming out of my nose, so it's either impacted wax or allergy, so give it your best shot". She takes the ear probe thing, sticks it into my right ear and says" WHOA!!! I said "WHOA??" really?

Then she goes into my left ear I(which I was hearing fine (or thought I was hearing just fine" and she announces DOUBLE WHOA!!

Then a young man comes in with a syringe and has me hold the bowl thing under my left ear (I then said "but my right ear is where I'm deaf and he goes "no believe me, your left ear is BAD" (I'm thinking 'how bad can it be I can hear perfectly fine in my left ear"

So he does the flushing and nothing came out, then he does the loop thing and nothing came out. By then I could hear nothing they said because I'm full of water in my left ear. They are looking at me and speaking and I said "Listen I know you are saying something but I'm completely deaf now"

He must have flushed my left ear 15 or so times with the warm water. Well, you should have seen what came out. This long LONG thick thing came out and it was like when Moses parted the red sea and I COULD HEAR. I then said 'OMG, I can hear you now it's all clear". The doctor then said "When we looked into your left ear we did not know if we could get that thing out. You are very lucky!!" They did my right ear (the one I thought was really bad!). Seems that one had wax but it was blocking the ear canal and that's why I couldn't hear a thing. Some wax came out and then I looked at them and said OMG, I can hear out of both ears now. Then then burst out laughing and said "Now you can stop shouting'!!! I said "I've been shouting??" They said 'You have been shouting since you first came in". I was all "i'm sorry, I'm sorry". They were hysterical. They checked me and now I'm clean as a whistle.

I'm sending all my friends there. I took their cards and brochures and tonight I will give them to all my hard of hearing older friends. rofl.

So I hope you all had a good laugh because I really thought I was hearing everything in my left ear and found out I WAS NOT. lol

Take care all

Melody