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.

--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 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