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Hello, new to this

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Hello, new to this
Pete Offline
Member


Posts: 24
Threads: 2
Joined: Jun 2016
Gender: Male
Location: MA
Treatment: Remission
#1
Mon-13-06-2016, 20:08 PM
Hey all.   I have recently been diagnosed with Pustular, Guttate, Scalp, and Nail Psoriasis.   Started with being sick, a poison ivy rash, losing sleep and stress from work, and im guessing excess drinking from stress also.    The poison ivy and cold went away, and about a week later i started breaking out everywhere, bumps, blisters, rashes, etc.   

I went to my Dr and he thought maybe I had reinfected with poison ivy and prescribed Prednisone.   That did clear up my palms and bottom of feet, and everything else seems to kind of stay at bay, until i started tapering off. Then it came back with a vengeance.   

Its been about 2 months now, and i was officially diagnosed about 2 weeks ago.   Been having trouble walking for about 6 weeks of it.   I have been using Desonate, Clobetasol Propionate, going out on my porch in the sun in bathing suit for 15-20 minutes any time i'm able(since ive been diagnosed its been sunny about 4 days, my typical luck) using Anumed Vitamin D ointment, and I have used a standard Centrum multivite which has Vit D daily.   A few days i took a Vit D pill with 1000% daily, thinking it is overkill so stopped.

There has been a little clearing of the guttate, i believe from sunlight mostly, as i find the creams/foam annoying to apply and unless a spot is really itching i dont use at all.  I tend to lean towards treating things naturally and avoiding prescriptions if I can just as a habit.  

I know if i could reduce my stress it would help, however my current work situation just wont allow it, and it should be back to normal in a few months, so i plan to tough it out.   It is a good job and pays well.

And lastly I have been looking into UVB therapy and I hope I am not chewed out for considering building my own light kit (I have many years of electronics training and experience)  I am trying to research wattages and the appropriate usage time and really just want to clear up my feet.   Small lights are readily available online for a few hundred, looking at parts required and just bulb alone could be built for under $50.    Feel free to tell me im way off here, im new to this and and comfortable accepting my idea may be a terrible one.

If anyone is curious about me im 36, married with a 3 year old daughter, used to enjoy mountain biking and kayaking, but mostly not sit in a chair with my feet up playing games on my PC.    Have been working as a Network Engineer for about 10 years now, with prior jobs in PC repair, Network Administration, Electronics repair, and a grocery store.

That was a bit long and i apologize for that.   If anyone has the patience to get through it I appreciate it.
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,597
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
#2
Mon-13-06-2016, 20:17 PM
Hello Pete,

Yes most of us will read through your story Smile, that is just how we are.

Welcome to psoriasisclub.  Smile

We are a group of people all with the same kind of problems and on this forum we have gathered a lot of experiences on psoriasis and psoriatic arthritis.  

As far as I read from your story, your problems are already that big that ointments nor UV will help you. UV also has the effect of damaging your skin, you don't want to get cancer in your later life.
For me there is only few doubt that you will be heading for the systemic treatments if not for the biologicals.

More on these treatments you will find on the forum and in conversations with others.

In the mean time enjoy yourself with us.
Caroline
Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,208
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#3
Mon-13-06-2016, 20:18 PM
Hello Pete  Welcome to Psoriasis Club.

I read through it.  Glass

I wouldn't recommend building your own light treatment, you need to get it right and you should also be monitored by a dermatologist. It's also not recommended to use Vit D reams and go out in the sun.

As for the Vit D this may help: Vitamin D the natural way.

Also if you're against prescription treatments, we do have the Natural Treatments For Psoriasis board. You may find something of interest, but it's not for me.

Regards.

Fred.
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
#4
Mon-13-06-2016, 20:30 PM (This post was last modified: Mon-13-06-2016, 20:31 PM by jiml.)
Hi Pete and  a big  Welcome  to the forum, you have come to a great place for advice and support we are a growing group of sufferers sharing information and experiences,

This platform was given to us by Fred who also  keeps the psoriasis boards  up to date and as we are all in the same boat he makes sure we are not troubled by spam,or other internet nasties.  so you can post here in confidence that you are just among friends

Your idea of a uv lamp for home use I would suggest if you do go that route ( which I would advise against) but if you do go for a reputable brand like Philips rather than something from an auction site,, which may not be accurate in the wavelengths emitted

With me natural sunlight is always a good way to get clear ...but it's a short lived clearance..you would be better seeing a dermatologist and getting one of the oral treatments that would probably give you longer term clearance.

I hope you get some good advice here and hope you will keep us updated on your thoughts and treatments

Good introduction I read it  Big Grin  by the way and thanks for posting
Good luck
Jim
Pete Offline Author
Member


Posts: 24
Threads: 2
Joined: Jun 2016
Gender: Male
Location: MA
Treatment: Remission
#5
Tue-14-06-2016, 02:57 AM
Thanks guys.   I dont think my case is that bad other than my feet.   My work requires some walking and I feel it doesnt help the issue.   My best relief there is a foot bath with some oatmeal after a long day.   Ill read more of the forums as i have time, hope that when i find relief i can share here and its helpful as well.
KyPrincess Offline
I'm a little flakey

100 + Member I Just Cant Stop !
Posts: 408
Threads: 9
Joined: Jan 2012
Gender: Female
Location: Danville, Kentucky
Treatment: Triamcinolone Acetonide Cream, Methotrexate
#6
Tue-14-06-2016, 03:31 AM
Hi Pete. Welcome to the club.
Turnedlight Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 6,178
Threads: 62
Joined: Apr 2015
Gender: Female
Location: Uk
Treatment: Skyrizi
#7
Tue-14-06-2016, 09:50 AM
Hi Pete nice to meet you!

Sorry to hear you're having a rough time, also it sounds like derms in the US are advising to avoid stress by giving up living lol but it's just as stressful having no job and no hobbies!

Not only that, I tried reducing my stress levels by not doing much at all for a couple of years (gave up part time job, gave up lampworking in case I was reacting to the metals in the glass etc) and it didn't make any difference at all.

It can take a bit of getting used to the idea of having psoriasis but there are plenty of treatments to help you, it's just finding what works for you.
D Foster Offline
“You only live once, but if you do it right, once is enough.”

100 + Member I Just Cant Stop !
Posts: 25,290
Threads: 17
Joined: Dec 2014
Gender: Male
Location: East Yorkshire
Treatment: Stelara 90mg and G&T
#8
Tue-14-06-2016, 12:19 PM
Hi Pete welcome to the forum.
I read your post and before you do anything at all I would do some serious reading about P on here, there is more information on here than you will find anywhere else so you should find it interesting. I will say one thing, don't treat it lightly and ignore it hoping it will go away you do need to try to control it catch it now. I would not go down the homemade UV route as Caroline said it can be a dangerous road to go down if not done properly and under supervision as it is a very specific treatment.
My son is in IT and works under contract ,at the moment he is running the IT department in a very large company so I know how stressful it can get.
Have a good look around on the site and ask questions which will be answered by people who will give you truthful answers from experience of the problem, do not treat P as though its just like a headache which will go away , you may be very lucky and not have to much of a problem but don't assume that will be the case.

Dave
dyorke Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 182
Threads: 4
Joined: Apr 2016
Gender: Female
Location: UK
Treatment: Acitretin
#9
Tue-14-06-2016, 12:44 PM
Hi Pete
welcome to the forum.. you will find a wealth of info here - I joined recently and have found it invaluable.

I have recently been diagnosed with Palmar Plantar Pustular Psoraisis  and have just started on Acetretin (25mg/day)
My Dermo said UV treatment was unlikely to help with this condition and would not recommend anyone to self treat with UV.
 (On Acetretin I am advised to stay out/cover up or use a high Sunscreen in the Sun)

Good luck with finding the right treatment for you 

Tink xx
Pete Offline Author
Member


Posts: 24
Threads: 2
Joined: Jun 2016
Gender: Male
Location: MA
Treatment: Remission
#10
Tue-14-06-2016, 15:51 PM
(Tue-14-06-2016, 12:44 PM)dyorke Wrote: Hi Pete
welcome to the forum.. you will find a wealth of info here - I joined recently and have found it invaluable.

I have recently been diagnosed with Palmar Plantar Pustular Psoraisis  and have just started on Acetretin (25mg/day)
My Dermo said UV treatment was unlikely to help with this condition and would not recommend anyone to self treat with UV.
 (On Acetretin I am advised to stay out/cover up or use a high Sunscreen in the Sun)

Good luck with finding the right treatment for you 

Tink xx

Please tell me how it goes.   The PPP on my feet is literally the one place im having trouble with clearing up.   As a side note those little foot baths you can buy with an oatmeal bath solution for a good couple hours of soaking does provide me some relief, if youre looking just to get your mind off it for a bit =)   I have some dead sea salts coming to try in the bath, if I find better relief ill make a note to give you a heads up.
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