AutumnLeaf's Intro

[AutumnLeaf]

Hi, I have just recently in the past week, been diagnosed with psoriasis and found this group while searching for a community that I could feel safe discussing this condition with. I am 30, female.

I mainly have scalp psoriasis but also have it on other parts of my body. Before my dermatologist's appointment I had no idea what this was and thought it was just a rash or fungal infection! I was so embarrassed because my scalp started shedding and I am a student and an intern studying to be a teacher and it just has been hammered into me that I need to professional all the time in everything! I am a bit relieved to know the cause because I was trying to treat it on my own and nothing was working!! But I am still a little concerned about scalp shedding in my chosen profession. I am worried my supervisor or a principal or mentor will think it is unprofessional and I have been contemplating telling my professors about my condition before someone says something, but it is a bit private and I'm not sure I should say anything. I have mostly been hiding it now by always braiding my hair.

Anyway, I finally went to a dermatologist and was given a month's supply of otezla (which I am not sure I will qualify for the free service in the future, but my doctor wants me to try). As well as some prescription topicals. She also suggested I use tgel shampoo.

I am now on a tapered dose of otezla and started with one ten mg dose in the morning and moving up to 20 taken in two 10mg pills twice a day today, and slowly building to the 30mg twice a day. I haven't noticed any side affects so far, but maybe it takes until you are on a higher dose?

I don't know much about psoriasis treatment, medications or anything, so any tips for a beginner would be nice.

[Kat]

Welcome!

I have scalp psoriasis as well and it can be very embarrassing. Hopefully the Otzela will help. Even though my scalp has been bad, I can usually keep it covered with my hair and I try to stick with lighter color clothing.

Glad you found us, this is a great bunch of people!

[Kat]

I just wanted to add that we have members using all sorts of treatments and they're always willing to answer questions.  

A lot of members (including myself) use a virgin coconut oil as a moisturizer.  I like to put a little in a bowl, then put the bowl in a larger one of hot water and let it melt because I like applying it better as a liquid and the warmth feels good.    

Most dermatologists start with creams and ointments, then go to oral medications and if none of that helps they go to biologics.  That seems to be the pattern anyway.

Take a look around and if you want information about anything in particular feel free to start a new thread and ask away!  Also in the off topic section [Group Specific] , there are some fun threads which is a good way to get to know people here as well as have a laugh or two.

Welcome again!

[JohnB]

Hi AutumnLeaf and a warm welcome to our club  

This is indeed a very safe place to discuss your disease. You will never suffer from the trolling you can get on some sites, they are very quickly evicted. Neither will you ever be given false hope or hammered with advertisements. All you will ever get is open honest discussion from similarly afflicted sufferers.

Please never be afraid to ask any questions someone will normally always be able to offer advice or be able to point you in the right direction - there is an awful lot of information on here so take your time to read through.

Unfortunately I can't be much help with your scalp Ps as mine is predominately on my legs. Otezla is a good start, and TGel has a good reputation in controlling the flaking. Raw virgin coconut oil is also very good as a moisturiser. Moisturising is one of the key things in helping to control the Ps. Sadly there is no cure, its all about management.

As for informing your employers, they really shouldn't make an issue of it. It is not contagious although anybody could develop Ps at any time in their life. I think it all depends upon how you feel. I know it can be very embarrassing but it would probably help if people are starting to look oddly at you.

JohnB

[Caroline]

Hello Autumnleaf,

Welcome to psoriasisclub.
In the tread Top tips for newly diagnosed psoriasis patients , you can find a number of beginnerstips.

Yes, it is good  that you now exactly know what it is. As then your treatments can be dealt with in a more effective way.
If I were you I should gather some statistics about Psoriasis and make kind of a leaflet in which you explain to your boss what it is. In the Netherlands, 400.000 people have it on a population of 17 million. I guess the same percentage holds for the US and that means a lot of people.
You can also explain that it is not contagious but also that anyone can get it because of inheritance or some other kind of trigger like an infection.

Kat’s advice is a good one. A virgin coconut oil is better than most creams and by far cheaper.
Come by with any question you have. It is hard for our community to give advice as a whole, but reactions on concrete questions are easier.

Cheers,
Caroline

[Fred]

Hello AutumnLeaf   to Psoriasis Club.

First off let me say sorry for getting diagnosed with psoriasis. Now to the second bit, it can hit anyone at anytime in their life anyone in the world could be next on the list.

And just to make things even worse (I'm known for saying it straight by the way) It is with you for the rest of your life. There is no cure so don't bother looking for one and definitely don't get sucked into all the scams out there, you will be throwing away your money.

The good news is that today psoriasis has finally been recognised as an autoimmune problem and is getting treated. It can however take time to see what works for each patient as it is still difficult to treat, but it can be controlled.

Even more good news. You have found us and although I am biased, you will not find a better place to talk with others that understand. We have a great bunch of people just like you from around the world and we all know how you feel.

I won't add more to what has already been said, apart from to say just dive on in and enjoy Psoriasis Club. We are here for you.

Regards.

Fred.

[AutumnLeaf]

Wow, thank you for all the warm welcomes!

My dermatologist did explain there is no cure so I was covered on that but thank you for the warnings! I will look into getting some virgin coconut oil too!

To be more specific I guess my main questions right now are:

If anyone else is on otezla, do they know when they first experienced any side affects and how long they lasted and intensity? I am a bit worried about the nausea and possible migraines interfering with my studies.

and for scalp psoriasis:

 What is best for scalp psoriasis after a shower? towel drying, blow drying? Something else? Or does it matter? My instinct is that blow drying is bad because of dry heat, but what about the cool setting?

[jiml]

Hi AutumnLeaf and as everyone had said   to probably the friendliest psoriasis site in the internet, we keep it friendly as we are all on the same boat and we don't tolerate unfriendliness
I'm not on otezla and can't help with your question about side effects but I'm sure someone here will have an answer for you
.Do make yourself at home here and look around the site ask as many questions as you might have ....there's usually someone close by who will answer

[Fred]

Wow, thank you for all the warm welcomes!

My dermatologist did explain there is no cure so I was covered on that but thank you for the warnings! I will look into getting some virgin coconut oil too!

To be more specific I guess my main questions right now are:

If anyone else is on otezla, do they know when they first experienced any side affects and how long they lasted and intensity? I am a bit worried about the nausea and possible migraines interfering with my studies.

and for scalp psoriasis:

 What is best for scalp psoriasis after a shower? towel drying, blow drying? Something else? Or does it matter? My instinct is that blow drying is bad because of dry heat, but what about the cool setting?

You are very welcome to start new threads to ask questions. We have no limits here on questions and encourage our members to go ahead and post. Even if it has been asked before, don't worry none of our members will put you down. We may point you to threads that may help, but psoriasis is so challenging and we have many threads but we don't expect our new members to trawl through them all.

So if you are up to it I would suggest starting a new thread in Prescribed Treatments For Psoriasis to ask about Otezla.

Then starting another thread in Psoriasis And Psoriatic Arthritis Topics with your question about scalp psoriasis.

There is no obligation and you can wait to see if anyone answers, but threads in this section "introductions" do get closed after 90 days and it could get messy.

You will probably get better answers to your questions from new threads as not all our members read introductions.  

[Kat]

I'll go ahead and answer on the scalp question (and I'll move my answer over if you start a new thread about it as Fred suggests)

I avoid the blow dryer, like you said just the idea of the hot heat makes it sound like a no. However, I have used it once or twice when I needed my hair to be dry and honestly didn't notice much difference. I don't think I'd want to use it daily but if I did it would definitely be on a cool setting.

I tried all different shampoos. None helped really. I did try a coconut oil shampoo for awhile that I liked and it worked as well if not better than the ones that said they were for psoriasis. Now I use a shampoo with Argan oil in it which I'm liking but jut to be totally honest NONE of them have helped all that much.

I have used a topical, Taclonex and it has probably done the most as far as helping with scales and itching. Sadly it's a steroid so can't be used all the time.