My Journey to halt/end my psoriasis

[Caroline]

Well, after a night of sitting with this information and diagnosis, I got madder and madder as the night rolled out. I was angry with myself for not going to the doctor relentlessly until I got seen and diagnosed. I am angry with the previous specialist for putting me on Dovobet for so long and not giving me the right information that I needed, so I could understand how serious psoriasis really is. Mad at my GP for not following up and educating me. Just a whole lotta mad going on. I mean, If I had known how serious psoriasis could be and that it attacks not only the skin but it attacks the organs and causes arthritis, I would have taken the bull by the horns and dealt with it in a more aggressive fashion. Guess that is part of the joys of being a procrastinator! 

Anyways, rant is done. I would probably have a drink right about now, but I am at work. lol

Cheers everyone!

Wintrman

I understand your rant completely and certainly an occasional rant happens over here. Psoriasis is one of the diseases that does not seem very serious in the beginning, but can develop badly. It is good to know a lot about it if you are having it.

You may think that we are a very serious bunch, but that is a great cover.
Drinks you can find in [Group Specific]. Regularly there are people over there, Dave drinking his gin, Jim consuming some pink cocktail and if you are searching for Fred he probably will be away getting a bucket of Merlot.

Cheers
Caroline

[Sheila]

Just got back from my appt with the derm. What a disappointment. Young. Thinks she knows it all. Not listening to me or my needs or wants, whatsoever. Unfortunately, she is my last hope in this tiny burg I call home. There is another derm, but for whatever reason, he is not responding to me or my GPs request to see me. So SCREW HIM!!!

This new child that is attempting to treat me, gave me a prescription for a new topical called Duobrii (Halobetasol proprionate 0.01% w/w) and tazoratene (0.045% w/w lotion) . $260 per tube. But with a multi use card she gave me, it was free. So that's not too bad. She also loaded me with samples of tropicals to help. One has steroids in it which I told her I wanted no part of.

So all in all, after I told her 3 times I didn't want tropicals in a polite way she over ruled me saying she wanted me to try this shit for 8 weeks. I am in no mood to be a guinea pig for anybody and their best guesses. I am so tempted to just throw this shit out and wait the 8 weeks. Did I mention I hate tropicals? 

Next appointment I am going to put on my Poppa bear pants and lay into this over confident little lady and show her I am in no mood for her trial and error shit. 

Did I mention I am super pissed? Raging is more like it. I am sick and tired of the itching, the pain and embarrassment I feel. I mean I wear a navy blue uniform. I am CONSTANTLY brushing off the flakes of skin off my shirt, my shoulders and my pants so I look reasonable and professional while at work. I go through soooo many lint rollers at work because of the flakes. The never ending flakes that fall off me like Pig Pen has dirt in Charlie Brown. 

I just took some meds for when I am anxious because of my ptss. It's no longer called ptsd. It's a syndrome, not a disorder.

Anyways, thoughts on the med? Anyone hear of it before??

Cheers from an irate Wintrman,

[Fred]

First off I would say though your dermatologist is young she is a dermatologist and has gone through the training, this is better than seeing just a family doctor. You could also look at it another way, a young dermatologist may be more up to date on treatments than an older one that is maybe stuck in their approach.

Next I would imagine most dermatologists would want to put you on creams that you have not yet tried as they have to try all avenues and follow protocol before offering light treatment or an oral medication, yes you have been through it with your GP but your dermatologist has to build up their own picture of what works for you.

I understand your frustration of being offered another topical, but now you have started jumping through the hoops with a dermatologist the sooner you will get to try other things. If you back out now you will only make things worse for yourself and probably end up begging to see another dermatologist in a few years, who will by the way want to start you right at the very beginning again.

So my personal opinion is that as much as it pains you I would try a different approach and try to get on with your dermatologist, who knows you may build up a good relationship and in a few months time think she is the best thing that ever happened. Work with them and get them on your side and you will find you get treated better, have a negative approach and they will probably just keep fobbing you off.

Duobrii like you said contains (Halobetasol proprionate 0.01% w/w) and tazoratene (0.045% w/w lotion) .............. Halobetasol is a highly potent steroid. Tazarotene is a compound similar to vitamin A. The total dosage should not exceed approximately 50 g per week and should never use on the face or genital area.

I would say give it a try, but at the end of the day it has to be your decision as it's your body.

Good luck. 

[Sheila]

First off I would say though your dermatologist is young she is a dermatologist and has gone through the training, this is better than seeing just a family doctor. You could also look at it another way, a young dermatologist may be more up to date on treatments than an older one that is maybe stuck in their approach.

Next I would imagine most dermatologists would want to put you on creams that you have not yet tried as they have to try all avenues and follow protocol before offering light treatment or an oral medication, yes you have been through it with your GP but your dermatologist has to build up their own picture of what works for you.

I understand your frustration of being offered another topical, but now you have started jumping through the hoops with a dermatologist the sooner you will get to try other things. If you back out now you will only make things worse for yourself and probably end up begging to see another dermatologist in a few years, who will by the way want to start you right at the very beginning again.

So my personal opinion is that as much as it pains you I would try a different approach and try to get on with your dermatologist, who knows you may build up a good relationship and in a few months time think she is the best thing that ever happened. Work with them and get them on your side and you will find you get treated better, have a negative approach and they will probably just keep fobbing you off.

Duobrii like you said contains (Halobetasol proprionate 0.01% w/w) and tazoratene (0.045% w/w lotion) .............. Halobetasol is a highly potent steroid. Tazarotene is a compound similar to vitamin A. The total dosage should not exceed approximately 50 g per week and should never use on the face or genital area.

I would say give it a try, but at the end of the day it has to be your decision as it's your body.

Good luck. 

Fred,

I do respect your opinion. However, fixing the skin, doesn't fix what's going on inside my body. How does a topical fix that? How does it lower the white blood cell count so that my immune system isn't attacking my skin and internal organs.? Am I missing something here? I have no faith in topicals. I just got finished with dovobet, a steroid, which is only a short term use topical. Wouldn't this steroid be the same thing?? If it's a short term measure, then why start it at all?
Sincerely,
Wintrman

[Fred]

I do respect your opinion. However, fixing the skin, doesn't fix what's going on inside my body. How does a topical fix that? How does it lower the white blood cell count so that my immune system isn't attacking my skin and internal organs.? Am I missing something here? I have no faith in topicals. I just got finished with dovobet, a steroid, which is only a short term use topical. Wouldn't this steroid be the same thing?? If it's a short term measure, then why start it at all?
Sincerely,
Wintrman

I 100% agree with you Wintrman but unfortunately a dermatologist has to follow protocol. We have seen it so often where people would rather go for something like a bio, but that rarely happens until you have failed on one or two oral treatments.

You could refuse the topical's, but I don't think many dermatologists would start a new patient on an Oral treatment. You could try asking for light treatment and explain that you refuse to use a topical, it's worth a try.

Failing that you are going to be left with self treatment with something like DMF or Natural. *If you wish to go that way these may help:

Natural Treatments For Psoriasis

Dimethylfumarates and Psoriasis

[Turnedlight]

FUUUUUUCK!!!!!

Just got back from my appt with the derm. What a disappointment. Young. Thinks she knows it all. Not listening to me or my needs or wants, whatsoever. Unfortunately, she is my last hope in this tiny burg I call home. There is another derm, but for whatever reason, he is not responding to me or my GPs request to see me. So SCREW HIM!!!

This new child that is attempting to treat me, gave me a prescription for a new topical called Duobrii (Halobetasol proprionate 0.01% w/w) and tazoratene (0.045% w/w lotion) . $260 per tube. But with a multi use card she gave me, it was free. So that's not too bad. She also loaded me with samples of tropicals to help. One has steroids in it which I told her I wanted no part of.

So all in all, after I told her 3 times I didn't want tropicals in a polite way she over ruled me saying she wanted me to try this shit for 8 weeks. I am in no mood to be a guinea pig for anybody and their best guesses. I am so tempted to just throw this shit out and wait the 8 weeks. Did I mention I hate tropicals? 

Next appointment I am going to put on my Poppa bear pants and lay into this over confident little lady and show her I am in no mood for her trial and error shit. 

Did I mention I am super pissed? Raging is more like it. I am sick and tired of the itching, the pain and embarrassment I feel. I mean I wear a navy blue uniform. I am CONSTANTLY brushing off the flakes of skin off my shirt, my shoulders and my pants so I look reasonable and professional while at work. I go through soooo many lint rollers at work because of the flakes. The never ending flakes that fall off me like Pig Pen has dirt in Charlie Brown. 

I just took some meds for when I am anxious because of my ptss. It's no longer called ptsd. It's a syndrome, not a disorder.

Anyways, thoughts on the med? Anyone hear of it before??

Cheers from an irate Wintrman,

Yup it sounds like your system is a bit like ours in that you do have to try things in order to move on.
If she’s the only one around, it might be a good idea to take a deep breath and make friends with her - you may as well..

However, can I ask are the flakes big or really tiny and do your patches look white and thick or quite red and hot to touch..
also, funny question but I’ve actually had this - did she actually inspect your skin or did she just chat to you with your clothes on?

[Sheila]

FUUUUUUCK!!!!!

Just got back from my appt with the derm. What a disappointment. Young. Thinks she knows it all. Not listening to me or my needs or wants, whatsoever. Unfortunately, she is my last hope in this tiny burg I call home. There is another derm, but for whatever reason, he is not responding to me or my GPs request to see me. So SCREW HIM!!!

This new child that is attempting to treat me, gave me a prescription for a new topical called Duobrii (Halobetasol proprionate 0.01% w/w) and tazoratene (0.045% w/w lotion) . $260 per tube. But with a multi use card she gave me, it was free. So that's not too bad. She also loaded me with samples of tropicals to help. One has steroids in it which I told her I wanted no part of.

So all in all, after I told her 3 times I didn't want tropicals in a polite way she over ruled me saying she wanted me to try this shit for 8 weeks. I am in no mood to be a guinea pig for anybody and their best guesses. I am so tempted to just throw this shit out and wait the 8 weeks. Did I mention I hate tropicals? 

Next appointment I am going to put on my Poppa bear pants and lay into this over confident little lady and show her I am in no mood for her trial and error shit. 

Did I mention I am super pissed? Raging is more like it. I am sick and tired of the itching, the pain and embarrassment I feel. I mean I wear a navy blue uniform. I am CONSTANTLY brushing off the flakes of skin off my shirt, my shoulders and my pants so I look reasonable and professional while at work. I go through soooo many lint rollers at work because of the flakes. The never ending flakes that fall off me like Pig Pen has dirt in Charlie Brown. 

I just took some meds for when I am anxious because of my ptss. It's no longer called ptsd. It's a syndrome, not a disorder.

Anyways, thoughts on the med? Anyone hear of it before??

Cheers from an irate Wintrman,

Yup it sounds like your system is a bit like ours in that you do have to try things in order to move on.
If she’s the only one around, it might be a good idea to take a deep breath and make friends with her - you may as well..

However, can I ask are the flakes big or really tiny and do your patches look white and thick or quite red and hot to touch..
also, funny question but I’ve actually had this - did she actually inspect your skin or did she just chat to you with your clothes on?

She did inspect my whole body....almost, if you know what I mean. She did seem engaged in that respect. She estimated coverage on my body to be 40 to 50 percent. and the flakes can be bigger is some spots, but the majority of it is small white flakes that seem to fall off at random. When I scratch the itchy area, it's this instant white cloud that falls to whatever is below that is around me. I mean a huge cloud of flakes. I have open sores on my arms and midsection due to scratching those areas that cause me to itch incessantly. There is the odd spot, like the midsection where it is warmer to the touch. So that is me in a nutshell.

Sincerely,

Wintrman

[Fred]

Could be worth alternating between the Duobrii and coconut oil during the day. You can read more about it here: Coconut Oil

[Sheila]

I do respect your opinion. However, fixing the skin, doesn't fix what's going on inside my body. How does a topical fix that? How does it lower the white blood cell count so that my immune system isn't attacking my skin and internal organs.? Am I missing something here? I have no faith in topicals. I just got finished with dovobet, a steroid, which is only a short term use topical. Wouldn't this steroid be the same thing?? If it's a short term measure, then why start it at all?
Sincerely,
Wintrman

I 100% agree with you Wintrman but unfortunately a dermatologist has to follow protocol. We have seen it so often where people would rather go for something like a bio, but that rarely happens until you have failed on one or two oral treatments.

You could refuse the topical's, but I don't think many dermatologists would start a new patient on an Oral treatment. You could try asking for light treatment and explain that you refuse to use a topical, it's worth a try.

Failing that you are going to be left with self treatment with something like DMF or Natural. *If you wish to go that way these may help:

Natural Treatments For Psoriasis

Dimethylfumarates and Psoriasis

 I think I will suffer through the 8 weeks and go back to her without even trying this steroidal cream. Or perhaps she will read a letter where I express myself in a more direct manner in hopes that she sees my determination and changes her mind about the course we should take in terms of treatments? I mean, I am willing to try methyltrexate, in spite of my reservations about my response in terms of side effects, to the medication. But I am going to refuse to use this topical I think.  I am the patient, after all, and I have rights! I should have the right to choose which medication I take. After all, it is my body we are talking about. I mean, I have psoriasis in my ears, and I mean RIGHT IN MY EAR! And you can't use a topical there. It itches there, and all I can do is haul out dry flakes and get some relief for a few minutes after that. I spend my days trying, and I do mean trying not to itch so others don't have to deal with the mess that I leave behind. The psoriasis is on my eyelids. I rub my eyes to relieve the itch until they are sore. So I go home looking like I have been eating CBD products because of the redness in my eyes.  So you see, I do have a reason for wanting to jump straight to oral treatments. I am frustrated, because I have been dealing with it for so damn long and want some real relief. Like Forrest Gump says, "That's all I am going to say about that."
Sincerely,
Wintrman

[Sheila]

Okay....because I felt I wasn't heard or my wishes respected, I contacted the nursing station where ***** works. When I talked to the nurse there, she assured me that Dr. ***** would read it and then put it into my medical file. So here is the letter I wrote. Tell me what you think please!
 Dear Dr. ******,

 
Yesterday, when I saw you, I didn’t feel like I had a chance to express myself appropriately. I feel that I didn’t walk away with knowing what the plan forward would look like for me. When we met yesterday, I expressed to you that I was not keen on topicals, and I have good reason, I think, to not want to have anything to do with them.
 
First, what you prescribed for me was a steroidal cream. I am whole heartedly against using more steroids. I have seen enough of steroids and I don’t like what they can do to the body, or to my mind (increased anger).
 
Secondly, I have psoriasis in my ear canals, around my nose, on my eyelids, on my forehead. How can a topical treat those areas? They can’t! Those areas, at least to me, are a high priority area. I mean, my ears itch a lot. I stick a finger in my ear, do the best I can to scratch it and come out with a bunch of dry skin. Q tips don’t do any good. I have resorted to using a bobby pin to scratch, which has its own set of risks. I scratch at my eyes as best I can as well. Being that I cannot scratch hard, I get little relief from my efforts.
 
Thirdly, isn’t psoriasis an auto immune disease? I mean I respect what a topical might do for me on the skin, but the white blood cells are attacking my bodies organs as well with the liver being first and foremost. At least that is what I have read from reputable sites. Am I wrong here? I don’t know for sure, because, the internet isn’t the most reliable place to find info, but I feel that the sites I did check out, are reliable. New England Journal of Medicine, et al.
 
So in asking for something other than a topical agent, I do not make the request lightly. I am asking for a little respect and to have you value my request. I do not write this letter with the intent of berating you, or belittling your opinion. I mean, for goodness sakes, you are a Doctor! You have spent a lot of time and energy to get where you are, and I respect that entirely. I would be a fool not to.
 
I guess what I am saying is, I want to make this a partnership where I as a patient, has input into the planning of my health outcomes. I want us to make a decision together, with me getting more educated along the way about what is going on with my body and the actions we will take, together, to fight this.
 
If you have any thoughts about this please feel free to contact me. I am open to conversation about this.
 
Sincerely yours,
 
Wintrman

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Edit by Fred: Doctors name removed.