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Old 03-01-18, 05:52 AM
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Ella is scared about moving on to biologics for her psoriasis.

I put this in parenting because it concerns Ella my 14 year old. She has horrible plaque psoriasis. She has had it since she was little but we didnt know what it was until middle school. We have been seeing the dermatologist for nearly 3 years. We have tried every topical cream, oil, solution and shampoo they have. She has been getting injections in her head once a month for almost 1.5 years. We did the UV laser treatment which cost a ton for 16 weeks. All with little to no improvemen. Its on her scalp and it gets awful. Its an autoimmune disease so its not simply a cosmetic issue. The NP said at this point there was little life left in the injections because the scalp skin was thinning in certain spots.

She set us up to see the doctor that oversees severe cases and handles the "biologics" (medicines that interupt the immune system to fight the psoriasis). Stuff like what you might have seen a commercial for- humira, stelaro, etc,

The doctor had to tell us every damn possible risk no matter how rare, and she heard "lymphoma (like .001%) and imunne system weakeness and other stuff like that.

When we got back to the car she was crying she is afraid of those side effects and is not on board right now with tryng it. Its 40,000$ and the insurance will take about a month or month and a half to approve it, and I have to take her for blood work first.

UNtreated psoriasis carries its own life changing risks and I told her about them. I told her I would print out info about biologics so she could make an informed decision.

Has anyone here tried them? She has one of the most severe cases the practive has ever seen. I do not want her to think its purely cosmetic. I want her to realize the risks associated with untreated psoriasis. I want her self esteem to be better of course, but I dont want her to end up with debilitating issues because she is scared.The biologics are injectables but they are preloaded almost like a stamp. She would get one in the office, a month later 1 at home and every 12 weeks at home. Its like a stamp that goes into the thigh. Thats scaring her too. But this girl has been getting injections all over her head for neary two years!

Anyone with insight for me?
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Old 03-01-18, 10:22 AM
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Re: Ella is scared about moving on to biologics for her psoriasis.

Has she tried any long-term elimination diets/habits/attempts with various foods and/or topical products she uses on a regular basis as part of her hygiene/cleaning routine to see if any of those things are triggering it, are the root cause of it, and/or making it worse? Could the treatments themselves be making it more intense rather than better?

Specifically eliminating dairy, gluten, and all artificially flavored/colored/sweetened/scented/etc highly processed stuff are what comes to mind first. I have no idea about the rest of the treatment options, but the food intake and what is applied to and absorbed by the body regularly are always the first things that pop up in my mind after experiencing things the way I have in my world.

I've learned time and time again in the last several years that no matter what topical things are applied/taken, and paid very dearly for, none of it has nor will provide long-lasting sustained relief, as I've experienced it within my particular biology, if the root issue isn't figured out and dealt with. Wishing her lots of clarity in finding answers and relief.
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Old 03-01-18, 11:20 AM
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Re: Ella is scared about moving on to biologics for her psoriasis.

It's just like treating any condition, including adhd. One has to weigh the risks
that are possible with treatment versus the probable risks of not treating it.

I have very mild psoriasis. I agree that the cause is autoimmune, much like
fibromyalgia which I also have. My allergies and sensitivities may play into it
as well.


My 16 year old granddaughter has type 2 diabetes and either don't quite grasp,
or chooses not to grasp, the long term issues that come from not treating it.
She refuses to exercise and eats whatever she can find, high sugar, high fat,
high carbs. It's hard as a parent to see them struggling with these choices.
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Old 03-01-18, 02:26 PM
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Re: Ella is scared about moving on to biologics for her psoriasis.

Quote:
Originally Posted by Unmanagable View Post
Has she tried any long-term elimination diets/habits/attempts with various foods and/or topical products she uses on a regular basis as part of her hygiene/cleaning routine to see if any of those things are triggering it, are the root cause of it, and/or making it worse? Could the treatments themselves be making it more intense rather than better?

Specifically eliminating dairy, gluten, and all artificially flavored/colored/sweetened/scented/etc highly processed stuff are what comes to mind first. I have no idea about the rest of the treatment options, but the food intake and what is applied to and absorbed by the body regularly are always the first things that pop up in my mind after experiencing things the way I have in my world.

I've learned time and time again in the last several years that no matter what topical things are applied/taken, and paid very dearly for, none of it has nor will provide long-lasting sustained relief, as I've experienced it within my particular biology, if the root issue isn't figured out and dealt with. Wishing her lots of clarity in finding answers and relief.
Sarah said they've been working with dermatologist for almost 3 years. I'd bet
that they've considered all those things. Allergies and sensitivities may make
the symptoms worse, but they are not likely to be the root cause.


Sarah, I just remembered that I tried Cannibis Hemp Oil for my overall pain
(including migraine) last year on the recommendation of my niece. Though it
did not help the pain at all ... the psoriasis began to clear up. I gagged at the
taste of it, though most people don't mind, so I stopped taking it.

But the psoriasis has been flaring up lately so I may have to try CBD oil again.
Oddly the worst patch is on my nose right under the pad for my eyeglasses.
Good thing it's not painful, but it's so hard not to pick at it.
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Old 03-01-18, 03:51 PM
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Re: Ella is scared about moving on to biologics for her psoriasis.

Check and see if any of the shampoos, laundry soap-it's really hared to find laundry soaps that list ingredients, deoderants, regular soap, dish soap, etc. have metholisothiazolinone in them.

It will cause the worst psoriasis you could imagine. Horrible.

Whatever you do, remember that stopping any of the Rx remedies to go on to biologics will instantly put her entire body into withdrawals of an intensity that she will most likely need a benzo or a very strong Rx antihistamine for.

It took me three or more months to get over the withdrawals from steroid cremes and topicals. Horrible stuff.
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Old 03-01-18, 05:04 PM
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Re: Ella is scared about moving on to biologics for her psoriasis.

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Originally Posted by Lunacie View Post
Sarah said they've been working with dermatologist for almost 3 years. I'd bet
that they've considered all those things. Allergies and sensitivities may make
the symptoms worse, but they are not likely to be the root cause.

Perhaps. If so, she can easily ignore everything I said. Just sharing the ideas that have helped me narrow down various things that were very problematic for my biological make-up that multiple specialists and/or professionals never did fully address, nor use the methods of such detailed deduction, both externally and internally. But they'd sell/prescribe me those expensive creams and ointments and such each time, without hesitation.

Topical issues (etc.) only go away/appear to be managed temporarily if the inward thing causing it isn't determined and changed/eliminated. Most of what was recommended to me by the folks highly trained to help me made me worse instead of better more often than not. I found it all to be pretty much a crap shoot.

Missy's suggestion is right on target. Products that we've been taught to use for "good hygiene" and "cleanliness" contain toxic stuff that wreaks havoc with us way more than most folks realize, yet many of those things aren't required to even be listed. Like "fragrance", for example.
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Old 03-01-18, 05:28 PM
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Re: Ella is scared about moving on to biologics for her psoriasis.

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Perhaps. If so, she can easily ignore everything I said. Just sharing the ideas that have helped me narrow down various things that were very problematic for my biological make-up that multiple specialists and/or professionals never did fully address, nor use the methods of such detailed deduction, both externally and internally. But they'd sell/prescribe me those expensive creams and ointments and such each time, without hesitation.

Topical issues (etc.) only go away/appear to be managed temporarily if the inward thing causing it isn't determined and changed/eliminated. Most of what was recommended to me by the folks highly trained to help me made me worse instead of better more often than not. I found it all to be pretty much a crap shoot.

Missy's suggestion is right on target. Products that we've been taught to use for "good hygiene" and "cleanliness" contain toxic stuff that wreaks havoc with us way more than most folks realize, yet many of those things aren't required to even be listed. Like "fragrance", for example.
Unfortunately, science doesn't seem to have figured out what causes these
reactions in some of us, or why some of us develop autoimmune disorders,
so most treatments are indeed a 'crap shoot.'

I know that gut health can make a big difference in our overall health, both
physical and mental (brain), and the use of biologics and DNA transfer from
fecal matter are increasingly being explored as treatments that change the
gut flora and possibly improve health.

This is what the new doctor is discussing but she frightened Sarah's daughter
with the whole gamut of possible (although largely unlikely) side effects.
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Old 03-01-18, 06:28 PM
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Re: Ella is scared about moving on to biologics for her psoriasis.

Though the statistical risk for the most significant side-effects of biologics is low, it must be considered that rolling snake eyes with them could be a death sentence.

I have a coworker whose sister chose Taltz as a therapy for her severe plaque psoriasis.

It helped her immensely, but she also developed TB, which was difficult to treat, and resulted in a months-long hospital stay.

You don’t turn off TNF-α without some consequence.

Of course, this is anecdotal, and patients more often than not do not experience the gravest side-effects.

That said, based on the science of the immune system, it should come as no surprise that lymphomas of many types are potential outcomes of repressing Tumor Necrosis Factor-α.

If you play with biologic fire, you might get burned to ash. That’s part of the risk.

At the same time, quality of life from autoimmune diseases can be seriously lessened. It becomes a question of what you are willing to risk trading.


Cheers,
Ian
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Old 03-01-18, 07:00 PM
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Re: Ella is scared about moving on to biologics for her psoriasis.

Quote:
Originally Posted by aeon View Post



If you play with biologic fire, you might get burned to ash. That’s part of the risk.

At the same time, quality of life from autoimmune diseases can be seriously lessened. It becomes a question of what you are willing to risk trading.


Cheers,
Ian
Plaque psoriasis can also be deadly (life threatening infections, stroke, heart
attack. Very rare? Yeah. But so are the risks of biologics. It's a really tough
choice for a 14 year old and her family.

Sarah
Ella
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Old 03-01-18, 08:11 PM
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Re: Ella is scared about moving on to biologics for her psoriasis.

What a difficult choice. I'm so sorry that your daughter is dealing with this. I know absolutely nothing about this so can't advice anything at all. Just wanted to send hugs abd lots of wishes.
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Old 03-02-18, 06:03 AM
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Re: Ella is scared about moving on to biologics for her psoriasis.

Psoriasis is an autoimmune disease... it goes beyond the cosmetic.
Quote:
Despite its very visible appearance on your skin, psoriasis is fundamentally an autoimmune condition, not a skin woe. ... Of the 21 autoimmune diseases studied, 17 were found to be linked to psoriasis, including alopecia areata, celiac disease, scleroderma, lupus, and Sjogren's syndrome.
This blew my mind. I have Sjogren's syndrome!I was diagnosed about 2 years ago with it.
That at least makes more sense to me now with the genetic component.
After what Aeon shared though I feel truly afraid. What if I let her do this and something happens? How will I ever live with myself?What if we do nothing and she develops psoriatic arthritis? She has been receiving steroid injections in her head once a month for a long time. Other than when we did the laser treatments that's how we have handled it. The skin on her scalp is starting to thin so that is not even an option. The only topical she uses now is RX shampoo. We gave up on all the creams and foams. I just dont know what to do.
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Old 03-02-18, 08:53 AM
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Re: Ella is scared about moving on to biologics for her psoriasis.

What exactly are the ingredients in that Rx shampoo?

Sarah, I went through HELL for 2 years while seeing every doctor, dermatologist, and even an infectious disease doctor??!!! It was so bad the skin had thinned to where it weeped water 24 hours a day.

Every doctor poker faced me and gave me another ointment, stronger and stronger, I had to look it up online to find the culprit.

Methylisothiazolinone is SO bad the UK surprisingly had already outlawed its use. Now they call it MI or ME allergen.

It is in almost every single shampoo on the market. A preservative. It is in every soap that is liquid. It doesn't matter that it is on her head, it touches the skin and travels throughout the body. Make-up, skin creams, and on and on. You'd think it could be washed off but it can not. Skin and scalp or whatever is a porous sponge.

I will tell you one good thing! The body can heal itself amazingly. I went from open red skinless weeping meat to perfect skin. When I stopped using all of the prescribed medications, I went through withdrawals for months.
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Old 03-02-18, 09:06 AM
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Re: Ella is scared about moving on to biologics for her psoriasis.

This is what I would do. For one month only rinse her hair with apple cider vinegar. One month. Nothing else. It is only a month but it could make the difference you can see and begin the healing.

Nothing at all on her head but apple cider vinegar. Bragg's with the Mother in it.

Hey, it is worth the try and it may do the trick.
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Old 03-02-18, 09:25 AM
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Re: Ella is scared about moving on to biologics for her psoriasis.

Thanks for the support call Mis. I will try the apple cider vinegar. We have at least a month before any decsion has to be made because she needs blood work and of course you have to deal with insurance. At this point Im desperate. Imagine if apple cider vinegar worked?? I would be thrilled.If it does work what's the follow up like? Every day still or once a month? Once a week. I think its hard for people to understand the gravity of the situation here. Unmangeable: I know you are very diet oriented and you know I have taken your advice about somethings (Im considering going vegan at this point) but in this case I think we are well beyond the point of diet addressing anything like this.
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Old 03-02-18, 11:12 AM
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Re: Ella is scared about moving on to biologics for her psoriasis.

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What exactly are the ingredients in that Rx shampoo?

Sarah, I went through HELL for 2 years while seeing every doctor, dermatologist, and even an infectious disease doctor??!!! It was so bad the skin had thinned to where it weeped water 24 hours a day.

Every doctor poker faced me and gave me another ointment, stronger and stronger, I had to look it up online to find the culprit.

Methylisothiazolinone is SO bad the UK surprisingly had already outlawed its use. Now they call it MI or ME allergen.

It is in almost every single shampoo on the market. A preservative. It is in every soap that is liquid. It doesn't matter that it is on her head, it touches the skin and travels throughout the body. Make-up, skin creams, and on and on. You'd think it could be washed off but it can not. Skin and scalp or whatever is a porous sponge.

I will tell you one good thing! The body can heal itself amazingly. I went from open red skinless weeping meat to perfect skin. When I stopped using all of the prescribed medications, I went through withdrawals for months.
I had horrible bumpy itchy skin all around my hairline for years. I finally found
a shampoo that didn't do this to me, Jhirmack. But it has methylisothiazolinone.
What shampoo do you use?
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