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Secrets, treatment, healthcare system

Name one change to improve psoriasis care…

64

Please don't include specific medical product brand names or external links.

64 responses

Ingrid
Ingrid @ingrid1

Medical insurance does not fund biologics in South Africa. We need funding for sufferers with moderate to severe P, and especially with arthritis. The cost of biologics is high, certainly, but is sure as hell cheaper than joint replacements, with the associated risks of major surgery.



Madmum007
Madmum007 @madmum007

educate doctors against over prescribing of steroids



Pat
Pat @pcbd12

Liver cleanse


Susan
Susan @godcares

Cut out sugar first.


michael
michael @macconmara

The use of auto immune medication .


Jim
Jim @jim1235

Diet. 100 pct.


Cherie
Cherie @cherie2

Given up Diet Coke, now drinking sparkling water. 🌺


Steve
Steve @cartermac13

For me Biologics, will never do without them.


Michelle
Michelle @mishlyn

Offering counseling upon diagnosis, where all the different types of routes that can be taken are discussed, while educating people on side effects of medications and on the importance of diet.


steve
steve @beachbum

Consume fermented turmeric and ginger,


Robin
Robin @robin5680

Biologics aren't affordable.


Steve
Steve @cartermac13

If you have Ins. that cover Biologics, they are. I pay $5 a month copay! That because the company gives me a $95 kickback.


sheila
sheila @sheila300365

Eat a healthy diet and take supplements that help with inflammation.


Sarah
Sarah @sarahlou

More aware of it and the doctors had an idea what to give us


Michelle
Michelle @michelle1021

I would say a healthy diet, exercise, fresh air and try not to stress. (oh, and occasionally a glass of dry red wine to prevent a sore throat ;))


Cindy
Cindy @cindy2180

medication helps and diet


Lorna Penner
Lorna Penner @lornapenner

Get healing for stress!


Ruben
Ruben @ruben

Diet, I'm finding out that sugar is a bigger trigger than stress...



Susan
Susan @godcares

Robin I guess it depends on your coverage for biologics. Certainly a few on this site have had great results without alot of side effects. I send the elimination diet for free if you want it. Just message and I'll get it to you. That way you can find out what foods are triggers for you.


Susan
Susan @godcares

Amen to the Lorna Penner. Stress is a killer for any human with or without autoimmune conditions.


 john,AQUA MAN
john,AQUA MAN @chewbacca

diet/lifestyle changes,less scaling on the skin, joints are better but, does take time :)



Roxanne
Roxanne @roxanne

Educating the doctors.


Sarah
Sarah @sarahuk

Compassion from doctors and derms


Marie
Marie @marie11531

Yes, compassion from doctors , but mainly insurances. They take to much time giving approval for ur biologics. Ur paying for the dam insurance. Geez😣


MyFallingLeaves
MyFallingLeaves @myfallingleaves

Educate the entire medical community that it is an autoimmune condition and can affect other areas of our bodies! I'm talking about eye Drs and Dentists too! They sorta understand that RA can wreak havoc on the body, but I had an eye Dr dismiss my concerns. So I had to have my gp write a referral expressing the autoimmune issue and sent me to a different Dr just to be more clear and do a thorough exam for my chronic dry eyes and not just telling me it's allergies.


Michelle507
Michelle507 @michelle1975

Meditation as it improves stress levels...😊


Victor
Victor @victor

Less reliance on Steroids!


eugene
eugene @eugene2673

Sometimes because one is not so calm! My dermatologist confirmed only 5% is eczema while 95% is owing to nervousness!


eugene
eugene @eugene2673

Try to wear less clothes and invest in a domestic sauna and sharing it with a relative or friend is not such a bad idea after all!


Steve
Steve @cartermac13

That is what's great about my Derm Sarah, I mostly see the Nurse practitioner now but between her & the Dr. which I've gone to for over 25 yrs. you couldn't ask for a better group of people :) Very caring :)


Susan
Susan @godcares

MyFallingLeaves that is an issue. One autoimmune issue leads to another. I had so many autoimmune conditions including sjogrens which affects the eyes. Lupus was worse than psoriasis. I am healed from all of it. Not by the medical community or medications. Mind/Body/Soul. Till I got to the root of the problem, gut health, stressors, food issues, well I would probably sick to this day. I can only suggest the elimination diet that a bunch of us are doing. If you are interested send me a message. I stopped believing that I could not be cured. I changed my mindset and my bondage to unhealthy living. It is a personal thing though. We all have our own lives going on around us so we, on Flaym, are here to support each other whichever way we go.


MyFallingLeaves
MyFallingLeaves @myfallingleaves

Susan. Yes tremendous power in healing the gut. I follow an anti-inflammatory, dairy free, fodmap free, food allergy free, ketogenic diet that aids in healing my insulin as well for PCOS. I intermittent fast everyday. Make my own bone broths, I don't eat out etc... I'm working with my gp, rheum/allergist, and gastro dr. I do alot of reading but still having more testing to know for sure what's wrong with my digestive system as well as environmental allergies. I eat arugula and a couple other fresh herbs, quality spices, meat and natural fat and pecans. I love making my own Ghee as well. If you'd like to send me what you gits do that's fine I always love learning. Thanks!


Susan
Susan @godcares

For some reason MyFallingLeaves I can't send you a message. If you message me I'll send you the elimination diet.


Gail
Gail @gail1968

I would love to know!


Susan
Susan @godcares

Gail I just sent you a message.


Jackie
Jackie @jackie67

Cut out stress. Relax where possible. Learn some tools to destress. Meditation etc.


Susan
Susan @godcares

Otto I agree. I guess I share what worked for me. I have learned alot here even though I thought I had the answer. I don't. I have a piece of the puzzle. I personally don't really believe in autoimmune dis-ease. That's me though. I have spent along time renewing my mind and not believing all the lies of the world. Was just talking about a hot pool with my guy the other day. We have a couple great, natural ones here.


Michelle507
Michelle507 @michelle1975

Perspective...how you look at something can be changed...
My kids saw my psoriasis falling onto my shoulders as snowfall and they laughted and I laughed too. It changed my perspective.
I am ‘ME’ first and my psoriasis comes second. Take care 😊


Susan
Susan @godcares

Michelle507 you are absolutely right! Perspective becomes our reality. Seriously, if we look at it calmly, it's just skin. We are so much more than that. I know when I was really sick and in pain I was struggling with walking. I remember thinking that my kids would grow up with a mom in a walking chair. Thank God that didn't happen, but that would have been part of our journey and I would still be me, with or without the chair. Kids are just great for making us laugh. You must have awesome kids.


carol
carol @carol1943

I moisturize religiously no matter how the P looks or feels. I am also very careful about what material is in the clothing that touches my skin.


Gail
Gail @gail1968

When it’s in your hair on top of your head it’s kind of hard to keep it oiled!


carol
carol @carol1943

I have an oil mixture that I put on my scalp every night and then I wear a plastic cap. Doesn't heal but it keeps the crust from building up and keeps me from feeling like my head is going to pop open during the day. Oh and my scalp doesn't itch either. I have been doing this for 40 yrs. Probably addicted to it.


Susan
Susan @godcares

Oh Carol I remember those days. Wearing this shower cap to bed and then in the morning trying to wash out all the oil. Hard times as I worked too and my hair was horrible with all that washing. You can always message me if you want the elimination diet if I haven't sent it already. Might help.


Madmum007
Madmum007 @madmum007

I do that some days/nights to carol, what oils do you use?


Denise
Denise @denise89

Comfrey cream and vitamins E. I have been about 13 yrs psoriasis free. Apply as many time a day as you want. Use for mange on animals, excess and nappy rash on babies.


Claire
Claire @claire12345

I use Retinal Cream with Vitamin E. Also I noticed that certain things I eat causes it to flare up.


Pat
Pat @pcbd12

I don't think I knew sugar was a trigger. I'm addicted to sugar & know that getting off it entirely is EXTREMELY difficult. I can be satisfied with honey but not stevia or artificial. Fresh fruit is my biggest go-to. Do I have to quit honey too? Any suggestions?


steve
steve @beachbum

Kombucha is made with sugar and although most of it is consumed into the scoby, it may still satisfy your cravings especially if you use a sweet juice like pineapple in the second ferment.



Gail
Gail @gail1968

I have had a bad day but granddaughter put her essential oils on top of my head and I actually think that it is helping 100%.


Lorna Penner
Lorna Penner @lornapenner

I use truvia sugar substitute for tea or coffee--and the brown truvia sugar for porriage and I like it but not stevia its to sweet. The Trim Healthy Mama diet uses truvia and its healthy..I can get used to that and use honey too for my hot water and lemon drink several times a day.



Denise
Denise @denise89

I had psoriasis on my head as well. Use a shampoo that contains coal tar. If you can leave in for a few minutes before rinse. You can buy over counter.


Denise
Denise @denise89

If possible stay away from any cream with cortisone and coal tar on the skin (not hair). It does help but it damaged my skin so I cannot tan on my legs which were my biggest area. It doest worry me though. No one can see it. I started with acqueas cream and Comfrey leaves cut up and mix. Put in microwave till cream melts. Let stand overnight and strain. But last couple years I use my favorite body lotion, add some vit E and you can now buy Comfrey drops. Add and mix.


JustMe
JustMe @justme

At age 57, I have been battling p for my entire life. Sorry, I have nothing to add that improves mine. I tried the [....]pill and it worked a couple of years till it didn't. Trying a new biologic if my insurance co approves it--it won't. They denied all others. I got on the path till covered program, thank god. Its good for 2 years, and free. (Meds cost 15 thousand a mo.) By then I will probably have new insurance and have to get approved and denied all over again. I am always covered 10 to 40%. When biologics work, they work for a while. All the creams, lotions, my body gets used to. There is no cure, only keeping it at bay till you cant. Most insurance companies are good. united health care is horrible. They didn't care about my history or oncoming depression the recent flare up that their fault for denying what I was already taking. united health care Insurance companies don't care about you or your quality of life. The last thing my PA prescribed is [....] l mixed with but heavy duty cream like [....] That didn't help me, but it might someone else.


carol
carol @carol1943

I put this in once but don't see it. I mix equal amts of mineral oil and peanut oil and throw in small amt of [....] ointment and use a cap cause it is messy. I do have to say that my scalp just laughs at tar shampoos. No help just dries scalp up and makes me miserable.


JustMe
JustMe @justme

I just found out that united health care refuses/denies authorization all the time. They know that some of these biologic companies will provide meds free if you have insurance. They will go to bat for you in the hopes of eventually getting paid. This has to change. Before you get to that point, you have to spend hours on the phone, Flare up and become depressed. Too much red tape and aggravation. People either don't know this, or give up when they get the first denial. I think it is high time to EMBARRASS the insurance companies into doing the right thing. How does a METOO type campaign sound on Twitter? Anyone? I was thinking maybe posting my recent flare due to insurance denials with along with a shot of my denial letter and trying to make it go viral. What do you all think? Anyone in my shoes or been there? I wonder if I would lose my insurance? It might have to be anonymous.


Bonnie
Bonnie @bonnie1964

I use HEMP CBD oil plant nutrition drops orally and topically to keep the psoriasis on my face from reoccurring quite successfully. Works for eczema too. Has to be full spectrum oil though. Works for all auto-immune issues actually.


Fatma
Fatma @fatma

I’d say a healthier diet has been helpful.


Judi
Judi @judi5

A healthier diet...lots of green vegetables...no gluten...no dairy, except hard cheeses, kefir and yogurt...only good fats...many supplements...Epsom salts in my bath...coconut oil and sunshine whenever available...



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