"I HAVE BEEN PSORASIS FREE AND "CURED" FOR ONE YEAR."

• By Kamran
• Reply 3760682
• January 31, 2013 at 4:53 pm
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kindly aware all of us about the medication you use..

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• By ellen567
• Reply 3760729
• January 31, 2013 at 5:09 pm
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Congratulations, Ron! What a wonderful change this must be making in your life!!

How long will the trial last? I remember you were worried about the price of this new 'biologic' drug, and whether you were going to be able to afford it when the trial ended. Have you found out anything about this?

cheer, ellen

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• By ellen567
• Reply 3760766 · In reply to 3760682 by Kamran
• January 31, 2013 at 5:23 pm
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Kamran, here is an article about biologics; it comes from the NPF, the folks who run this list.

http://www.psoriasis.org/about-psoriasis/treatments/biologics cheers

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• By diamondee
• Reply 3760790
• January 31, 2013 at 5:30 pm
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Good for you Ron!Keep smiling.

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• By clarey
• Reply 3760986
• January 31, 2013 at 6:22 pm
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Fab news Ron

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• By mely1129
• Reply 3761770
• January 31, 2013 at 11:04 pm
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Praise God happy for you :)

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• By fuend
• Reply 3761916
• February 1, 2013 at 12:25 am
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hail hail skin on arm pit or pectom

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• By Quest4Cure
• Reply 3762087
• February 1, 2013 at 3:03 am
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Just curious --- did you do any before photos prior to beginning the IL-17 trials. I'm always wanting to 'see' the results - probably more for understanding the severity of your psoriasis and how it cleared in the initial days/ weeks. Somehow, visuals are just so much more convincing to me.

In the trials (and continued use) of the TNF-blocking biologics, the list of documented and possible side effects were enough to make me not want to move toward Humira, Enbrel or Stelera. One of my region's 'top derm docs' (ranked #1 in my state) had mentioned casually to me, "Yes, there's always a likelihood or possibility that lymphoma can come into play, but if it does, it's likely to be 8 or 10 years down the road, and we can deal with those issues when, and if they arise." This was supposed to be comforting to me, but my personal inner translator/filter rationalized... "Okay, so the trade-off is clear skin for 8 to 10 years and then lymphoma and chemotherapy.. but again.... clear skin for the time being!!" I couldn't justify it.

Needless to say, I opted out of the biologics for the meantime, even though my psoriasis is at a stage that's bad enough that if I lived in Biblical times, I would probably have already been dragged outside the city walls or placed off on an island for lepers.

But IL-17 therapy sounds so much more promising --- like they may have tapped into something that shows great success and clearing --- WITHOUT as much compromise of the immune system as the earlier tumor necrosis (TNF-blocking) biologics.

It changes the game... and now the wait to see if there are any of the long-term, way down the road side effects. But from what material is out there on the reports from the clinical trials, IL-17 has the 'best press' I've seen for any possible treatment that I've seen in the past 30 years. (And yes, I was one of the ones originally prescribed the R-drug in years gone by - one which was showing tremendous promise and effectiveness in reducing psoriatic plaques --- while gradually causing severe brain tissue issues in many patients patients before the drug was finally pulled off the market and out of hospitals by the FDA. Clear skin in exchange for vacuous 'holes' in your brain - and odd forms of dementia, etc... scary days!

I sincerely hope this one stays afloat without any major downsides in the months and years to come. It is without a doubt the most positive thing I've read about in a long time on the pharm side.

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• By RONCFE
• Reply 3763091 · In reply to 3762087 by Quest4Cure
• February 1, 2013 at 11:33 am
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As far as pictures go, unfortunately that is my biggest regret. You see I have been on almost everything since 1972 and no matter which medication I was on, I would "clear up" a little bit. So, I figured the same with IL-17 (in fact the doctor didn't think to take pictures). Not in my wildest dream did I think I was going to clear up in 2 days. I probably cleared up in one day, but I never bothered to look. You know, force of habit. You think your sheets would be full of blood, scratching, white scales all over the bed and floor.

As for how bad I had it, it was on my legs (front, back, thighs, calfs), arms, hands (I used to put make up on my hands when I had a business meeting), scalp (I could never wear dark shirts or suits) with thick patches and a snow storm, and on my backside. Everynight when I would get ready for bed, I had to soak my shirt, socks and underwear to get rid of the blood. I remember when I would go to a hotel, I could just imagine what went through the housekeeper's mind when she would come in the next morning and make my bed (sheets looked like the horse scene from the Godfather). So, I hope this gives you a picture of what I had.

As far as side effects according to your doctor in 10 years, let me tell you I was on methotrexate for almost 25 years along with other ointments, light box treatments, etc. They all can "cause" cancer in so many years. I used to smoke 3 packs of cigs a day since I was about 15. Stopped about 20 years ago. To me the cigs were more harmful. To answer your question about 8-10 years from now, I don't care at this point of my life. I am 68 and never felt better. IL-17 cleared me and gave me a freedom I never knew. People don't look at me and I can wear black!!!.

If you look ar all of my threads, you will see how many people have gone onto IL-17 after reading them. They have been clear with no side effects. I did plenty of research before I went on this drug and decided to go with it as I had faith in my doctor. By the way, did you ever read the side effects on a bottle of asprin or cough medicine???

Finally, with all due respect to you doctor, don't trust him. I have been through about 15 derms since 1972. One of them, who I was with for 33 years, was very well known and also a professor of derm at a hospital. Not one of them ever told me about the trials for the simple reason they couldn't give the shots to me and would therefore lose a patient and money. My interest told me about the trials and which hopsital to go to. If you read the threads I posted, you will find that most people who found out about IL-17 was from this website. Not one of their derms told them about IL-17

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• By jerseyboy76
• Reply 3763205
• February 1, 2013 at 12:02 pm
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Good to hear your still clear and no side effects. I found my niche product in 2001, hyperimmune egg. cleared up for over 10 years. it's a great feeling.
the fact that in two days you cleared up is amazing. No telling what is next but can say that newer drugs will be using some very advanced techniques. Even cancer drug delivery will be isolated to specific cells and cytokines.

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• By ellen567
• Reply 3763431 · In reply to 3763205 by jerseyboy76
• February 1, 2013 at 1:00 pm
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Jb, alot of people will be wondering what the heck a hyperimmune egg is? It sounds like a joke, but obviously isn't. I'm glad it is working for you. Is it expensive? Is it available OTC? Have you had any side effects to speak of? Here's the webmd article I found:


http://www.webmd.com/vitamins-supplements/ingredientmono-1130-HYPERIMMUNE%2 0EGG.aspx?activeIngredientId=1130&activeIngredientName=HYPERIMMUNE%20EGG

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• By irexx
• Reply 3763485
• February 1, 2013 at 1:17 pm
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How does skin clear up in days or even weeks? Don't get me wrong, I just find it difficult to believe your skin can grow healthy that fast.

The lifecycle of a -healthy- skin cell, as I understand it, is 23-28 days before it reaches the surface you can touch. A psoriasis skin cell takes 2-6 days and therefore is not really a skin cell but a retarded bit of flesh. From what I've witnessed, psoriasis patches about the size of an apple took 90-120 days to disappear completely and leave clear healthy skin surface. To me I think that qualifies as a cure.

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• By RONCFE
• Reply 3763552 · In reply to 3763485 by irexx
• February 1, 2013 at 1:40 pm
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I it sounds impossible, but I am not the only one that was clear in two days. Look at my other threads. I agree with you, but if it didn't happen to me I would be hestitant to believe it. But it is true.

Regarding Jerseyboy, I know him from my other threads. He is terrific in that he really does extensive research. I don't know anything about his treatment, but I do agree with him about cancer. Hopefully within 5 to 10 years that disease will also start disappearing more.

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• By Ramirezj2
• Reply 3763843
• February 1, 2013 at 3:10 pm
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happy to hear good news

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• By monster20
• Reply 3764101
• February 1, 2013 at 4:41 pm
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Hello
i am in england and wondered if this drug will ever be over here. My 19 year old daughter is distraught over her psoriasis . She is currently taking methotrexate.
It is lovely to hear happy stories instead of gloom and thankyou for sharing with us

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• By oliverz
• Reply 3764831
• February 1, 2013 at 9:05 pm
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Congratulations on one year clear! I am new to this forum but have had ppp for 13 years. Sometimes are worse than others and I am at my very worse right now. My dermatologist is suggesting Soriatane but I am not liking the side effects I am reading about. I noticed in one of your posts you said your trial was in NY. I live in the Albany area and am in NYC often. Would you mind sharing where the trial was. I am very interested. If I don't do something soon I will not even be able to walk!

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• By RONCFE
• Reply 3765161 · In reply to 3764831 by oliverz
• February 1, 2013 at 11:23 pm
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@oliverz
The first thing I would tell you is to get a new doctr. Soriatane is an old medication. I was on it when it first came out, about 5 or 6 years ago. STAY AWAY FROM IT. TERRIBLE SIDE EFFECTS. YOUR NAIL START SPLITTING AND FALLING OFF. Just to give you a litte tidbit: My doctor of about 35 years (very well know dermotogist, who teaches dermotogy) gave me it when it first came out. About a week after taking Soriatane, I noticed my nails were splitting. I called his office and told the nurse about my prolbem and to have him call me back. Remember, I was going to this doctor for 35 years. He calls back 3 days letter and tells me yep, it is a side effect. I asked him why did it take 3 days to call me back to which he replied: "It wasn't a medical emergency!!!!".

I kept my next appointment with him and once again confronted him in the hallway on my way into the exam room so his other patients could hear me shouting. I asked him again why three days and he told me the same thing. To which I replied in a very loud voice: "Dr. B (first initial of last name), YOU HAVE A LOT OF NERVE TO WAIT 3 DAYS. I DIDN'T KNOW WHAT THE PROBLEM WAS AND TO ME IT WAS A MEDICAL EMERGENCY. DR. B, I HAVE BEEN YOU PATIENT FOR 35 YEARS AND DON'T LIKE TO BE TREATED AS A NUMBER. I AM EXTREMELY DISAPPOINTED IN YOU AND WANT YOU TO KNOW THAT I AM FIRING YOU AS MY DOCTOR and I stormed out. But his other patients heard me!! So I got my pound of flesh.

From that point on, I went from one dermotogists to another (about 10 or so) since 2007. I fired all of them and then my internist (not my derm) told me about the clinical trials and he saved my life!!!!

In the beginning, you have to go once a week for 3 months for your shots. I go to Mt. Sinai Hospital on East 98 street.

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• By ted46239
• Reply 3765270
• February 2, 2013 at 12:39 am
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so have u ever been on humira or sterlara and ur trials does it have good results for all types of psorisas espically ppp

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• By Quest4Cure
• Reply 3765384
• February 2, 2013 at 2:20 am
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@ JerseyBoy -- Are you a distributor for the i26 immune powder supplements?

I remember reading some threads on hiEggs 2+ years back and kinda scratching my head. The concept is interesting and certainly there are many components in eggs that are beneficial, but I'm wondering if there are lots of persons experiencing clearing or long-term improvement with P/PA? If online sources can be believed, the parent/holding company of the hiEggs is the same company that markets Noni juice.

My personal experience as a distributor for other MLM companies (Bestline, NuSkin, Amway, etc) is that the focus tends to always sway toward the multi-level pyramid framework of downline/upline compensation and revenue and NOT on the product's efficacy or utility. You can find persons spending 5 times the retail (Costco) cost for a bottle of Noni juice from a network distributor, despite the product coming from the same source. Multi-Level-Market schemes notoriously push the 'opportunity' over the product itself.

So, having been absent from Inspire for quite some time, and after reading this thread for IL-17 Clinical Trials and then seeing an inserted plug for an egg powder sold exclusively through a multi-level-mktg company, my red flags naturally go up.

Don't get me wrong, -- I'm happy if you've found something that works, but from a casual bystander perspective, it somehow seems a little opportunistic to push something so off-topic, unless to sort of one-up the 1-year "cure"/clear with a 10-year 'cure' that does't require any medical involvement.

Perhaps you could just post a separate thread for the hyper immune egg powder with your personal testimony, experience, photos, etc.

----

@RONCFE I have to chuckle when I read about your willingness to get loud and vocal when a highly regarded medical professional treats you as though you're entirely insignificant. I, too, have wondered on a couple occasions if I was going to be escorted out of the hospital/university's derm clinic after raising my voice at the insensitivity/ carelessness of the attending physician or staff.

I remember being 'abandoned' in a check-up room --- having talked with the initial intern 'screener', disrobing and sitting in a freezing exam room in the 'hospital gown' for 75 minutes without anyone ever opening the door. The clinic had officially closed 30 minutes earlier and so I'm assuming there must have been some emergency to cause such a lengthy wait. I sat another 20 minutes before peeking out of the room. No one in the hallway. I got dressed, grabbed my folder from the door rack - and wondered if I'd be 'locked in' the clinic's waiting room. As I walked past the central station, there sat my doctor -- feet up on the console, telling a joke to someone on the phone. I tossed my folder in his lap and yelled over his conversation, "i'LL HAVE TO TRY FOR ANOTHER APPOINTMENT WHEN YOU'RE NOT TOO BUSY TELLING JOKES!" Furious, I walked out. On my return visit 2 days later --- another over-extended wait -- and no acknowledgement that I'd even been there two days before!

Another derm doc prescribed an incredibly potent steroid creme - and told me to "Apply it to all of your affected areas as soon as you get home - and to do this in the morning and again before bed."

With years going to this same clinic and having tried dozens of tubes of every imaginable creme/salve/steroid/tar, etc., I made the mistake of just going home and doing what my doctor had told me to do. WHAT A HUGE, HUGE MISTAKE!!! First and foremost, the steroid creme was so potent that the instructions recommended using gloves for application -- and that a very "thin" and "conservative" amount be applied to affected areas. I was squirting long ropes of the stuff into my hands and massaged it into my legs and arms which were 90% covered with red plaques. The tube of steroid creme (which was excessively expensive even after co-pays) should have lasted 4 months. I went through 2 full tubes in 5 days!!! - and the pharmacy didn't question that I was picking up 2 large tubes every week!.

I had followed my doctor's advice directly --- and within 3 weeks I was suffering from fairly severe corticosteroid overdose --- so in addition to uncontrolled psoriasis, I was also now experiencing tinnitus, hypertension, shaking, insomnia and feelings of fearfulness (way out of character for me). When I explained to him the side effects I was having, he wasn't concerned at all - condescending at best. When an intern questioned me about the steroid as the possible source of the insomnia and hyped stress, I told her that I'd used nearly 10 tubes. "Oh, honey, you are OVERDOSING big time!".

I learned that regardless of what the doctor says, scrutinize every medicine label and take the time to read ALL of the instructions -- both from the pharmacy AND in the package inserts. If you have questions or are unclear about anything - get professional advice from your doctor or pharmacist before starting. And most important -- just because your doctor gives you generalized instructions taking/applying/injecting a medication, always know that there is room for error - and more than likely, your doctor has never personally used or tried the drug.

When I sat back down with my doctor in the exact same setting - and I mentioned the nightmarish experience I'd endured with the steroid overdose, he didn't seem interested at all. I asked him if he couldn't have at least given me a small warning about the strength of the prescription --- that I wasn't supposed to apply it with my hands -- and that I wasn't just supposed to put on more than just a very small amount in any single application. (He should have never told me to apply it to "all of my affected areas" knowing the large surface area I had covered in plaques. -- that alone was probably 30 times a recommended 'dosage')

I wish I'd had the courage to get even louder and more vocal with him - but I was still such a mess I was lucky to be able to drag myself from the office to the car. I "FIRED" him by never going back -- and when I explained what had happened to my next dermatologist I visited, he just shook his head in disbelief.

I know I've been through over a dozen and a half dermatologists and specialists over the years. Some good. Some horrific. Some very empathetic and skilled, others anxious to keep an appointment under 4 minutes to make a tennis match. But I have learned that just because a person has his or her office wall covered in plaques and degrees and certificates - it doesn't mean that they're necessarily skilled, or always professionally prepared to help a patient covered in plaques.

I know this --- especially when you are taking or considering taking drugs and medications that can affect your long-term quality of life -- or even longevity ---- NEVER HESITATE TO GET A 2nd.. or 3rd... or 4th opinion if you need to.

And when you've been wronged by a physician or practitioner -- SPEAK UP -- and demand the care or professionalism that you deserve. And when all else fails ---- FIRE THEM. (and file any available complaints or grievances with hospital/clinic/association ombudsmen, etc) to make sure that they're aware of what happened -- and hopefully prevent it from happening to other persons just like you. I'm not anti-doctor by any means, but for some of the stinkers out there, they won't go away if you don't raise your voice.

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• By susiequery
• Reply 3765757 · In reply to 3763091 by RONCFE
• February 2, 2013 at 8:45 am
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Ron: Glad for your success. I would just caution advising not to trust yours derms. This is an incidious disease. People have to participate in their health. If one has side effects to something stop taking it before a doctor tells you to. I also go to a derm in a teaching hospital. I've been offered all kinds of studies and trails to participate in. People can ask their derms or their doctors about anything that they find out about.

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