julie8888, Lana and 18 others participated...

Flaym
...feeling hopeful Flaym @flaym

Treatment, healthcare system

Do you feel like all possible treatments are made available to you? If not - why?

62
62 responses

Cheryl
Cheryl @cher88

Not really, generally when you see a doctor they don't notify you of new medications. If doctors don't tell us how are we supposed to know of new drugs.


Susan
Susan @godcares

Hi Flaym. I guess it depends. Each of us are different. When I started my diet and lifestyle change the rheumatologist was very short with me trying to make me feel stupid about wanting to get off medications. It would have been beneficial had he said something more positive. It was many years ago and taking control of your health was not common practice. Maybe a more supportive doctor at that time would have been what I needed available. Here in Canada, most things are readily available though.


Joann
Joann @joann1

No! I had to go into my doctors office and be stern about what I wanted to try, She at first wanted me to go see another dermatologist and I refused! No More Salves, Creams, Ointments that do nothing! We Need A CURE!!!!


Janice
Janice @Immy

I used the same steroid ointment for 25 years with no improvement, I said to my doctor that surely there must be something else that is better on the market by now and he said no there isn't, I don't think GP's are interested, they know it can't be cured so they aren't interested.


Susan
Susan @godcares

Janice possibly you are right. I think with all the sicknesses out there psoriasis might be the least of a GP's concern as we don't die from psoriasis. Lupus, however, for me was like a death sentence with lots of pain. I'm just happy that I found a different way for healing and am off that rollercoaster.


Gail
Gail @GiGi

I think they are there, but I think some docs are more aggressive than others in treating the condition. It is imperative to do your own research and go to your appointment armed with questions and gather as much info as possible. One doc gave me a spray and cream, another gave me shots, lotion and is r


Gail
Gail @GiGi

(Cont) referring me for laser. Sorry, dog bumped my hand and I hit post.


Marietes
Marietes @marietes

My doctor and dermatologist keep experimenting on me on the medications lol it's like trial and error, they keep saying it's DNA and diet and foods have nothing to do with it..but believe it or not no body have this conditions on my generations and ancestor lol other than me , so I decided to stop all the med and steroids cream im using i start practising clean living and learning to do breathing technique than allowing you to flow youre energy thru out my body, my flaym family it will be us will make difference for our own body ..Good day to all😊


Nan195
Nan195 @lynnie

As my P remains two patches on a knuckle and also on the side of an index finger, I feel that the available treatments to me have been sufficient.
Of course a cure would be a miracle and we are all striving for that or just to get relief and stop the P from spreading.
All the very best my P family 🌹😊


Rich
Rich @Richarino

I have been given [...] for my face for the last few years until I was sent to a dermatologist who said I’m not meant to use it on my face. They don’t care...


Phil
Phil @padavis

Most definitely. If you keep up with the science and medical care of Ps you'll realize what's available and what's coming


Susan
Susan @godcares

Marietes you are doing all the right things in my opinion. I don't even know if they will ever find a "cure". We here, who consider ourselves cured, are definitely informing our doctors that there might be a different way than drugs. That's my personal experience anyway and I have a super doctor. Blessings to you on your road to recovery!


john
john @chewbacca

hello flaym, the only creams that worked for me to keep it at bay are steriods though, i know they are bad,i decided to make a choice and my choice was to change what i was doing to make my joints worse and skin to be worse also, psoriatic arthritis what prompted me to change my lifestyle,i have never relied on derms and doctors as i know they cant help me unless i want medications that are still in the dark ages or may have possible side effects like pills etc for which i refused those also,i have been in my own bubble with psoriasis all life until i came here :)


Sarah
Sarah @sarahuk

Hi no I dont think so. I paid a large sum to see a private consultant dermatologist recently about extensive guttate coverage, who would only recommend immunosurpressant tablets. He said light therapy was my only alternative but that the waiting lists were too long. I didn't want to take the tablets, so while on the light therapy waiting list I went to my GP who prescribed a vitamin d analogue which cleared it right up in 2 weeks! It can be a bit of a lottery of what is available depending on who you see in my experience


Kerry
Kerry @kerry21

When I was having chemo my psoriasis went completely. Bit of a dramatic option ha ha, also when I was pregnant and injecting insulin (gestational diabetes) I was psoriasis free. Just need to bottle that and yay no more psoriasis. It has come back worst than before probably all the stress. X


Dave
Dave @Dave13

Hi Flaym, I think that here in the UK, not everything available os offered to us to be honest. When I used to go to the doctor for different creams, ointments etc, the firstvthing he used to do was open that book with all the medications in......then more than likely look at the price!
The NHS is good but it is still cost sensitive so if something is absolutely fantastic, but fantastically expensive....it wont be prescribed..that is the downside, that is why I believe we don't get offered the full range...cost and budgets.


Kim
Kim @Foody

Thirty years ago, yes, I was given everything the NHS had to offer. I wouldn't like to try now.


Guy
Guy @gqf

Certainly. However, because of my other health issues I am unable to take advantage of them. Specifically , oral and injection treatments.


Linda
Linda @linda1011

I have no problem with up to date meds...I'm against most of them. When the warnings are possibly risking my life...I say no. Lived long with this disease and I plan to live a lot longer.


Debbie
Debbie @debbie1956

We have discussed the different treatments I can have. Right now I take several medications trying to gain control but many days I feel bad and am not sure what to do. I don't want to take anymore meds. I am really tired of being sick and feel like it's a punishment for some past son. I am just not sure what. Actually I went through some really bad times and had to make a decision for a family member that broke my heart.


Sharon
Sharon @sharonld

No, because the insurance companies are determined to tell you what you can try, and you must try and fail several before being allowed to try the new meds.


Cindy
Cindy @cjb

Yes my rheumatologist is very thorough and explains my options well, at least so far. The only limitations are insurance at this time. My Doctors are getting good at clearing things with insurance. Very blessed with my current doctors.


Susan
Susan @godcares

Debbie it's not a punishment for a past sin in my opinion. It's just your/our life journey. Most of us who did a diet and lifestyle change found our conditions got better or healed. I do not take any medications and eat very differently than I did. Please notice some of the posts about diet. If it doesn't work for you then at least you will know you tried. I share all the time my diet so ask about it when you are ready. Blessings to you.


Lorna Penner
Lorna Penner @lornapenner

Because Doctors want to keep you sick and coming for more appts--its their business! They don`t tell everything..The doctor who was replacing my doctor told me they don`t make Cold Tar lotion anymore?? No true--the commpound pharmacy can make it up but you need the right perscription from Dermatolgist for you..It might be differant for someone else. Just an example.


Joel
Joel @joel

Considering a pharmaceutical company created Playm. This seems like a loaded question. Asking about access to treatments.


Nan195
Nan195 @lynnie

Hi Joel, who and what is Playm?
Take care 🌹


Mike
Mike @mike46

my co pay is $50 and blood tests are only covered after I pay my $2600 deductable. I found out this same plan will cost me over $300 a month with no co pays and with a $7000 deductable,I dont know what I am going to do


Brenda
Brenda @brendawylde

No, our provincial government insists we do the step system and try every level of drug first. Some have serious side effects on the way up to the ones that have least side effects. Not worth taking the chance.


Jacqueline
Jacqueline @jholly

You know...I've been thinking lately...I'm going to try one potential remedy I don't think any one's tried...I'll cast some White witch spells to clear my psor up...I'll get back to you on the results.
😝


Susan
Susan @godcares

Jacqueline Maybe a witch spell might work. Who know's? Your life, so Rock on! LOL


Bambi
Bambi @bambi

No! I had a NP that work great with me. Listened to me about what I've tried and what has worked. We found the best treatment for me. It was Steroid shots under my lesions. Cleared them up within a couple days and stayed clear for months. I only needed to get them done 2-3 times a year, but she left my area and no one at the office is willing to learn how to do the procedure. I went to a dermatology clinic and asked if they would do it for me and they said it is not a treatment they use for psoriasis any more.


Angie
Angie @angie191

No! So frustrated!


Susan
Susan @suki

They are available, but the cost is outrageous and my insurance will not cover. I've been able to try many different drugs but cost is a. Issue.


Ingrid
Ingrid @Lana

No...there is no treatment for psoriasis because wrinkle creams, Botox, peeling, etc gives more money. So what's the point to do research on it ? No point since just a "few" million people has it. (angry)


Lorna Penner
Lorna Penner @lornapenner

My doctor gave me perscription today for water pills for water retention and wrapped my legs ---he did a good job today--gave me a new perscription for thyroid and told me to come back in a couple of days and he would wrap my legs again--dermatolagist gave me a big jar of allergy cream for P--and some pills for sleeping--we will see if it helps. Apo_Hydroxyzine FOR SLEEPING---Allergy cream is betaderm. I hope I can sleep tonight.


Lorna Penner
Lorna Penner @lornapenner

mY DOCTOR GAVE ME TODAY THYROID MEDS AND WRAPPED MY LEGS PLUS GAVE ME WATER PILLS--AND DERMATOLAGIST GAVE ME A BIG JAR OF BETADERM FOR ALLERGYS FOR P--AND SOME PILLS FOR SLEEPING-APO-HYDROXYZINE--i HOPE IT WORKS AND I CAN SLEEP TONIGHT.


Lorna Penner
Lorna Penner @lornapenner

COST IS AN ISSUE FOR ME TOO.


Dave
Dave @Dave13

Hi Joel, not a loaded question at all as not all treatments are pharmaceutical. I don't think cynicism like that has any place here. Thank you.


Nan195
Nan195 @lynnie

Hi Everyone, please share with us all your experiences with a new Treatment etc. every bit of info helps and arms us to get better.
Thank you all for the fun and laughter, we will improve and fight P together ❀️🌹


Mike
Mike @mike46

There are drug programs out there for people who cant afford them but your doctor should be telling you about these programs.


Lorna Penner
Lorna Penner @lornapenner

I think when we go to the doctor -and have already been diagnosed of p--then we think that he should fix it and he should know how to fix it,,if he dosen`t tell us of new or old treatments that we might not be aware of then how would we know?


Nan195
Nan195 @lynnie

Hi James,
Amber's after you πŸ˜€πŸ˜€


Linda
Linda @linda1011

I saw this on a different site...I feel the need to share.

I am sick of seeing this kind of reporting about the "Newest" and wonderful drugs for psoriasis. The latest is a biologic called " tramya" at WALMART this drug cost over $ 10,000.00 ! Are you kidding me??? The drug companies are more in control of this countries health than the medical field. And doctors don't check into the long term effects of these "new" drugs. I was on a biologic for 12 years. While it did clear my psoriasis, never, as time went on was I informed that new side effects had surfaced through the years of use. I am no having to undergo radiation to my legs. This is extremely painful. I was not told that this drug could (and in my case) and did cause skin cancer. Now they are prescribing this medication for many different health issues. Be viligent people. Your best defence is you. The doctors and the drug companies DO NOT CARE, AND DO NOT POLICE THEMSELVES.


john
john @chewbacca

why i chose lifestyle changes :) its safer and makes one healthy over time and be a better weight,better skin, better joints if one wants to make changes:)


Julie
Julie @julie8888

I tried a new treatment, it was the first one that made life unbearable, i was able to reverse the effects, thankfully. Sticking to old school, meds.


Bambi
Bambi @bambi

I have done diet and I've always been an active person. I even did the diet that is "spot free in the 30 days" it did not work at all and it is very hard to maintain when you are the only one in your house or office on it. I am disciplined enough to maintain a diet over a long period of time but the juice hasn't been worth the squeeze in my case. Linda I completely agree with you. They would rather experiment on us with drugs that do us more harm than older treatments(which I understand have their own risks) because they are in the pockets of the drug companies. I should be able to decided which side effects I'm willing to risk having not be forced to do a treatment that I find extremely dangerous. I'd rather have psoriasis than risk the outcome of these new drugs.


john
john @chewbacca

hello bambi, it is impossible to be spot free in 30 days, you break an arm,how long doesit take to heal, its the same for anything in your body, you can see improvement in weeks with diet but, the overal outcome takes months and more than likely a year with full diet changes. i am 8 months in and have let my hair down quite a few times, my skin is good and so are my joints, there is no quick fix,people do it for a weeks or months and say nothing happening, its got to heal inside first before it will help heal the outside, why people give up, some expect to be clear in a couple of weeks, not going to happen but, you see some improvements slowly in time,especially if you have psoriaic arthritis like i have,there is no crash course fast diet, we all wish there was :)i wish you well :)


john
john @chewbacca

at work bambi, wassurrounded by cakes sweets, with little faces saying eat eat me, its determination and it isnt easy at all agreed,i thought i wouldnt do it, it took 2 months to eliminate everything that was bad for us or potentially bad for us,i have had someone say to me, they dont have time to change their diet,really? its a case if one wants to, it is a choice a choice for everyone, if people dont want to do it, its fine, there are a few people here including myself that have seen big changes in diet/lifestyle and it didnt take a month, it took determination and time to achieve it, thnk you i wish you well :)


Julie
Julie @julie8888

My post button is not working???


Julie
Julie @julie8888

I am unable to post the medication name, that's why my post button won't work.


john
john @chewbacca

hello julie,dont want names of creams put dow, put the first letter and dashes and put the last letter in for the product if you like ,maybe only way thanks


Julie
Julie @julie8888

I take pills because of how bad it gets, m_e _th_otr_ex_ate , i used to be on creams and tar therapy, it helped until the arthritis and spine problems set in. My family has psoriasis so I am the lucky decedent lol.


john
john @chewbacca

hello julie, i work in a nursing home and they give this one out to residents alot,did you get any sised effects from it ?thanks


Julie
Julie @julie8888

Good for you working in medical field! I worked in MD at NIH when in college and later at Lupus Fdn, miss it much.
At first I had mouth sores, they reduced it to control it. Mild nausea only once in a while. Sweating and fatigue are my main challenges. My Dr has me on six, once per week and with daily folic acid. Some people say they cant handle the upset stomach and diarrhea. I seem to be doing well with that part these days. I took O-t-ez-la, it was not good for me. Paralysis at six pm (weird), it was awful and tendinitis pain all over. It took a few months to get out of my system, thankful it reversed!


Susan
Susan @godcares

Bambi I have to agree with John. It took me a very long time to get healing with my diet and lifestyle changes. It took decades to get as sick as I was with all my autoimmune diseases and it took probably a year before I really got to noticing a change. I practiced though and now I don't crave sweets or carbs that turn into sugar in the body. Neither do I crave fruit juice or much fruit either. Sure it had it's tough moments but I was very determined to get off any medications at all and am happy to say I take nothing at all now. It was my self that was the guinea pig. Didn't have a single soul, friend, doctor who could help me. Now I share for those that want to try get of meds. Blessings to you.


Susan
Susan @godcares

Linda I'm totally into trying anything other than pharmaceuticals for anything. Even a simple headache. Nobody, not one doctor, told me about how thin my skin would be with continued steroid use. I found out the hard way. I am cured, in my opinion, of my psoriasis and other autoimmune diseases now. However, that thin skin might just linger. Lesson learned and now all I can do is let other's who are younger than me just try an alternative way. Might not be a quick fix, but no side effects with a diet/lifestyle change.



john
john @chewbacca

if the net was around when i was young and flaym was here then, i could had prevented my arthritis who knows just by changing my lifestyle back then instead of now but, i am thankful i did it now than not all, theres an opportunity now to be had to improve your condition and you may prevent yourself getting psoriatic arthritis and other problems assocciated with psoriasis, live healthier feel better be a healthy weight too,it is a choice though a choice for everyone :)


NS
NS @scratchy

nearly all information i've learned about psor has come from my own study. doctors are very passive about treatment, likely because it is not considered serious or life threatening - to them


john
john @chewbacca

doctors and derms do not treat the route cause of psoriasis just symptoms,that is their job,one doctor did listen to me and was very interested on what i had to say on the subject a while ago as i went regarding my hurnia, think he was impressed by my weight loss and my healing of the conditions i have, doctors can learn from us too :)


Ingrid
Ingrid @Lana

Yes there is a medication that works, cannabis !! Flaym...do some reseach !


john
john @chewbacca

hello ingrid,quite a few people say that cannabis works, i may make abig spliff tonight then i may even forget i have psoriasis? joking :),1 doctor atually advised it for my arthritis though, i didnt go down that route, i think people put it directly on the skin not smoke it thanks

Flaym
Flaym @flaym
Copenhagen, Denmark

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