08 Jan 20:02
Secrets, treatment, healthcare system
Name one change to improve psoriasis care…
Please don't include specific medical product brand names or external links.
08 Jan 20:35
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.
08 Jan 20:37
08 Jan 20:43
educate doctors against over prescribing of steroids
08 Jan 20:44
08 Jan 21:13
08 Jan 21:34
Cut out sugar first.
The use of auto immune medication .
08 Jan 22:00
Diet. 100 pct.
08 Jan 23:45
Given up Diet Coke, now drinking sparkling water. 🌺
08 Jan 23:55
For me Biologics, will never do without them.
09 Jan 02:25
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.
09 Jan 03:00
Consume fermented turmeric and ginger,
09 Jan 03:01
Biologics aren't affordable.
09 Jan 03:38
If you have Ins. that cover Biologics, they are. I pay $5 a month copay! That because the company gives me a $95 kickback.
09 Jan 03:58
Eat a healthy diet and take supplements that help with inflammation.
09 Jan 05:20
More aware of it and the doctors had an idea what to give us
09 Jan 06:19
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 ;))
09 Jan 07:31
medication helps and diet
09 Jan 07:33
Get healing for stress!
09 Jan 08:53
Diet, I'm finding out that sugar is a bigger trigger than stress...
09 Jan 11:17
09 Jan 14:48
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.
09 Jan 14:49
Amen to the Lorna Penner. Stress is a killer for any human with or without autoimmune conditions.
09 Jan 15:21
diet/lifestyle changes,less scaling on the skin, joints are better but, does take time :)
09 Jan 15:28
Sugar & wheat!
09 Jan 16:18
Educating the doctors.
09 Jan 16:42
Compassion from doctors and derms
09 Jan 16:49
Break up the bound up interstitial fluid through targeted massage . Oh yeah I'll have to look that word up . Gee I have two hands , maybe I should try that . It's free and it's the cause .
09 Jan 16:54
Yes, compassion from doctors , but mainly insurances. They take to much time giving approval for ur biologics. Ur paying for the dam insurance. Geez😣
09 Jan 16:56
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.
09 Jan 17:42
Meditation as it improves stress levels...😊
09 Jan 19:16
Less reliance on Steroids!
09 Jan 20:39
Sometimes because one is not so calm! My dermatologist confirmed only 5% is eczema while 95% is owing to nervousness!
09 Jan 20:40
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!
09 Jan 22:27
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 :)
09 Jan 23:16
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.
10 Jan 00:43
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!
10 Jan 01:38
For some reason MyFallingLeaves I can't send you a message. If you message me I'll send you the elimination diet.
10 Jan 03:03
I would love to know!
10 Jan 03:53
Gail I just sent you a message.
10 Jan 13:49
Cut out stress. Relax where possible. Learn some tools to destress. Meditation etc.
10 Jan 19:22
One should really get a grasp on how how your immune system works before thinking Otto M. Moon is the root of all evil. It's still a theory and a pretty flawed one. You would be having much more other issues if it was the case. But if it gives you comfort , I guess it's okay , almost a religion , maybe a Golden Calf would work. Exercise will benefit you more than anything!
10 Jan 19:29
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.
10 Jan 19:41
The rosette stone is exercise and breaking up the plaque. That's all I have done. pain free , PsA doesn't bother except when I break too much of the plaque at one time in my ankles and it makes Psoriasis below my knee, which pretty much blow auto-immune out of the water. I moved a gummy wad of protein and calcium from one place to another , that's all . I can get rid of the itch in about 10 mins , by clearing above my knee. Sort of like rush hour traffic , you don't move until the person in front of you does.
11 Jan 06:20
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 😊
11 Jan 14:31
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.
13 Jan 00:25
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.
13 Jan 02:03
When it’s in your hair on top of your head it’s kind of hard to keep it oiled!
13 Jan 21:05
Yeah hard for fluids on your inside to reach the top of your head also
14 Jan 05:00
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.
14 Jan 13:40
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.
14 Jan 17:53
I do that some days/nights to carol, what oils do you use?
14 Jan 20:25
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.
14 Jan 22:05
I use Retinal Cream with Vitamin E. Also I noticed that certain things I eat causes it to flare up.
14 Jan 23:44
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?
14 Jan 23:49
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.
14 Jan 23:54
Good more sugar for me ;-)
15 Jan 02:13
15 Jan 02:19
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%.
15 Jan 05:37
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.
15 Jan 12:01
Coconut oil x
15 Jan 13:57
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.
15 Jan 14:06
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.
15 Jan 20:00
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.
15 Jan 21:23
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.
15 Jan 21:44
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.
16 Jan 06:37
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.
16 Jan 22:43
I’d say a healthier diet has been helpful.
12 Feb 12:01
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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