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Psoriasis Club › HealthHealth Boards › Prescribed Treatments For Psoriasis v
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My Journey to halt/end my psoriasis

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My Journey to halt/end my psoriasis
Sheila Offline
Sheila

100 + Member I Just Cant Stop !
Posts: 580
Threads: 5
Joined: Apr 2021
Gender: Female
Location: Manitoba
Treatment: Enstilar
#1
Thu-06-05-2021, 15:25 PM
In the early stages of my affliction, I paid it no mind. My skin was discolored, but it wasn't painful. I let it be. A year later (2017), I noticed that my knees were reddish. Again, I paid it no mind because it wasn't painful. 6 months later, It started on my elbows. Now I was concerned. I went to a doctor, and he gave me a corticosteroid cream. I used it and I was good to go. There was still redness, but the plaque disappeared. 

As time went on, I was seeing more and more inflammation. It popped up, here and there, so I used the cortisone cream and again had some results. By 2018, the cream wasn't working any longer...at all. I went back to my doctor. He gave me dovobet ointment. Wow! I was impressed. It worked so well. Inflammation was at a near zero on my body. I used the ointment. I had to scrounge to get the money to pay for this med, in spite of it costing me $250 a tube. My doctor kept on refilling the prescription for Dovobet ointment. I kept on using it. He even sent me to a dermatologist where I started to get phototherapy. That was the only thing he did in addition to the Dovobet. in the spring of 2020, the dermatologist told me to take the summer off from the phototherapy and told me to come back in the fall. When I tried to return and make an appointment, the receptionist told me that I had not been to see him in 3 months, so I had to be referred to him again by my family doctor. To date, this dermatologist has yet to return my calls, in spite of 2 referrals from my GP. 

In recent months, I have not been able to afford the ointment, due to being unemployed (government shut down my job due to Covid). My psoriasis exploded! Hands, arms, back, legs, chest, behind the ears, in my ears, on my forehead/eyebrows, eyelids, nose and cheeks were affected. Now I am constantly scratching causing lesions on my body. Blood on the inside of my shirts and pants is a common occurrence because I can't seem to stop itching. Everywhere I go, I leave a trail of skin flakes. When I get up from the couch, get up out of the bed, get out of the car, I see tons of flakes and I wasn't even scratching! I feel so ashamed. 

Passersby stare, kids point and ask about it. I have had the experience of having being singled out at work because of the mess I leave behind, unintentionally. I am embarrassed and shattered by this disease. I feel depressed. I secretly wonder how my wife can even stand to be around me, because I can barely stand to be around me. As a result, depression is a large part of my life.

Fast forward to today, and I am working to remedy my psoriasis. There is actually a new dermatologist in the practice that my general practitioner (GP) is in. I have an appointment on the 13th and am looking forward to it, anxious for it. I am learning lots here and now have some info about what I might need or want for treatments. I am actually feeling hopeful for the first time in a long, long time. 

My commitment to you folks, is to document my journey in hopes that it may help someone else in the future. If I can do that for someone, then all my suffering will have been worth it.

Cheers!
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Turnedlight Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 6,076
Threads: 62
Joined: Apr 2015
Gender: Female
Location: Uk
Treatment: Skyrizi
#2
Thu-06-05-2021, 15:59 PM
I don’t know if it helps, but a lot of your story is so familiar to us. Ok, here in the uk there isn’t the issue of crazy prices for prescriptions of an ointment which probably costs very little to produce.

But the psoriasis suddenly getting a lot worse, itching, leaving skin everywhere and bleeding on clothes, being stared at etc definitely resonates with a lot of us.

It’s hard to know whether feeling depressed is because of having a condition that’s difficult to control, feeling unattractive and embarrassed and wretched or just from the sleep deprivation - I think probably a combination of them all. It might seem like this is a skin thing but it’s actually got a lot more effect over your whole body than you might think.

However, I do think you will get things moving in the right direction with some help, and will feel much better overall.

Hope things go well on the 13th. Don’t hold back explaining how much it’s affecting you - looking at your skin isn’t their only way to understand how bad it is right now, sometimes how your skin looks isn’t an accurate indicator of how it feels.. sometimes though it looks worse than it actually feels!
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,850
Threads: 3,885
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#3
Thu-06-05-2021, 19:49 PM
Good luck with you journey Wintrman I have subscribed to this thread for updates and I will put it in next months newsletter.  Thumb

As TL said your story sounds very familiar but at least now you know you are not alone.  It may be worth you trying our PQOLS it's not recognised by medical professionals but it will give you an idea about how psoriasis is effecting your life.

I will say "Don't be ashamed" that you have psoriasis, there is nothing wrong with having it and it can hit anyone at anytime in their life. So if anyone ever talks down to you about it, just remind them that they could be next.

Your wife can stand being with you because you are partners and you support each other, you would support her if she had a problem so share it with her. Yes it's a shame she can't go with you for your appointment, it's the same here due to covid but there is nothing stopping you asking your wife for her thoughts to take in with you to the appointment.

At the end of the day you have found us and as you have already found, there is a lot of support and we are here for you.

Smile
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Caroline Offline
You must hurry if you ever want to catch a chicken...
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Forum Helper
Posts: 26,472
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#4
Thu-06-05-2021, 21:06 PM
Eh.. guys and girls, did we mention coconut oil already to Wintrman? In the hope that is may reduce the itching?
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,850
Threads: 3,885
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#5
Thu-06-05-2021, 21:09 PM
(Thu-06-05-2021, 21:06 PM)Caroline Wrote: Eh.. guys and girls, did we mention coconut oil already to Wintrman? In the hope that is may reduce the itching?

No we didn't and yes it could help. Coconut Oil

Won't get rid of psoriasis, but can help with soothing.
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#6
Thu-06-05-2021, 21:53 PM
I hope you get a good response from the new dermatologist wintrman and now you've found us you have had some great advice from members here and should be armed with information to help in the discussion and hopefully you will get a good treatment .
But as Turnedlight has said do tell them how badly it's affected your life and the effect mentally on you and as Fred has said do the PLQL and if possible print it and take it with you to remind you of the answers .
As has been said by others your story is very familiar and resonates with me ... But these days there are so many treatments available and should be possible to control it and if you're lucky enough to be prescribed a biological and there is a cost I believe that most manufacturers have programmes to make it affordable to you so do ask about the assistance that they might be able to offer
Good luck at the appointment
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KatT Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 5,775
Threads: 50
Joined: Sep 2019
Gender: Female
Location: Canada
Psoriasis Score: 1
Psoriatic Arthritis Score: Off the chart!
Treatment: Simponi + hydroxychloroquine + MTX
#7
Thu-06-05-2021, 23:38 PM
Please don't be ashamed!  Lots of people have conditions like psoriasis or other.  People who stare or single you out are simply not aware/educated about psoriasis 

Hope your appointment with your dermatologist goes well and you can start a new treatment as soon as possible 

Put your wife on speaker phone for the appointment   Wink
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Sheila Offline Author
Sheila

100 + Member I Just Cant Stop !
Posts: 580
Threads: 5
Joined: Apr 2021
Gender: Female
Location: Manitoba
Treatment: Enstilar
#8
Fri-07-05-2021, 00:07 AM
I have learned more here than I had hope to. It has provided me with a great deal of info I will take into my appt. I just hope this doc is a good listener and ready to work hard.  I am more optimistic than I have been in a very long time. So thankful to have found this place.
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Raxyl Offline
100 + Member living the dream

100 + Member I Just Cant Stop !
Posts: 7,373
Threads: 35
Joined: Nov 2017
Gender: Male
Location: Launceston, Tasmania
Psoriasis Score: 2
Treatment: Cosentyx
#9
Fri-07-05-2021, 05:00 AM
That's great to hear, chin up Wintrman, we are all here to support each other.
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Wooley Offline
I'd be unstoppable if I could just get started!

100 + Member I Just Cant Stop !
Posts: 2,645
Threads: 7
Joined: Jul 2017
Gender: Female
Location: Spain
Treatment: Nothing currently
#10
Fri-07-05-2021, 19:04 PM
Good luck with your appointment Wintrman  Thumb
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