Question for anybody with p....

[Jillian1507]

I read so much information in all of the postings and how wonderful everyone has been. Not too be to negative, but we always seem to talk more about the bad (hey, trust me, I understand, as I HATE this crap), but does anybody have any stories to tell of the p never coming back? or just possibly coming back in small bouts throuhout life? I guess I'd like to know what I have to "look forward" to in my life...LOL

Thanks in advance! (I guess I just need some motivation right now and hope this stuff will just GO AWAY!!!!!!!!!!!!)

[Allie]

Jillian,

First, I doubt there are many people here who have been blessed with remission & stick around. Yes, through treatment, people have achieved sustained relief, but that's continous treatment. (Regardless if it is a life style change with Alt & Comp therapy or a physican prescribed therapy.) If anyone stops the treatment, p will revert in either a fevorous flare or a slow creep.

I think your idea is good one - in looking at the positive things p has given us.

P has helped me learn to see past the picture and see the whole person. It also helped me learn at a very critical point in my teenage development who my "real" friends were.....I am happy to say, I still talk to one of them & that is after being away from my home town for more than 10 years.

It teaches me things everyday. In my current stage of life, it is teaching me to have faith. Faith we will find a sustainable treatment for my children. When I was in high school, I HATED the idea of passing p along to my child, so I always believed I would never have any..... Then I met my hubby when I was 24. He said to me, "we are two good looking people. Why wouldn't we have kids?" I responded, "Well, duh, look at my scalp, belly, arms, etc..." He said, "honey, I see none of that when we are together - I only see you" So I relented and said I would consider it.........Now we have been married for 3 years, and I am soooooo looking forward to starting a family with my wonderful pain in my rear darling hubby.

Thank you for starting this & making me smile tonight.

[raydon14yp]

If you do not have one, find a good dermatologist and/or internist rheumatologist. Ask your pharmacist who he would recommend. He knows who the good ones are. Do not be afraid to use the meds that they are using to treat p. It is much better to have almost clear skin than being 80% covered. I know!!! I have been through the worst parts of this horrible disease & have gone from 80% coverage to about 5%. I am 78 years old & have had p for 55 years. The last 20 years have been the best of my life because I have been on methotrexate for 19 years & Enbrel for 5 years. I do not know if this info will help you, but, as one of my MDs told me, you have to take the bull by the horns & fight this disease. Hang in there. Maybe one of the new drugs (and there are many), will offer a CURE!!!

[Jillian1507]

Thanks Allie! What a wonderful hubby you have! I have also been married 3 years (in June) - how cool! I'd love to start a family as well, but I guess I'm hesitant as I'd like to calm down my p first! Keep me posted on any babies on the way!!!!! Completely off the topic, but aren't baby shoes just the cutest? I love the little Nike shoes....they are just so cute!!!!

[Allie]

Jill,

ALL BABY STUFF IS CUTE!! I have the fevor so bad, I am making my hubby nuts.

I am bad at tracking who is doing what treatments.... So please forgive me if this is redundant, but what treatments are you currently using? I came off of Enbrel at the end of March, and staying pretty clear. Slowly, I am starting to feel my aches and pain. On my creeping spots, I am using topical steroids and tanning. Closer to TTC, I will hook up with a derm that will be able to UVB treat me in office close to my work. I truly want to be free as possible of treatments when I start TTC.... The hardest part will be the PA. I was DX'd with mild PA shortly before going on Enbrel, so I really have not experienced long-term pain. When I asked my current Derm (who is located in IL, and I recently moved to IN - hence the need to change derms), She told me to "Suck it up, and deal with it" She said nothing is really safe.... And she knows - she's had two kids... I was like, yeah, but not with P & PA.

[Jillian1507]

Do not be afraid to use the meds that they are using to treat p. It is much better to have almost clear skin than being 80% covered. I know!!! I have been through the worst parts of this horrible disease & have gone from 80% coverage to about 5%. I am 78 years old & have had p for 55 years. The last 20 years have been the best of my life because I have been on methotrexate for 19 years & Enbrel for 5 years.

Thanks Raydon....It just seems to stink. I do have a great derm - the only disadvantage is that I have to drive 2 1/2 hours to see him. I can say though, if I woke up tomorrow freaking out (which I have when it was on my eyes!!! AHHH), he got me in that same afternoon - HOW AWESOME!) Anyways, it just stinks b/c I don't know what's safe and what's better to use. I don't want to live with this crap either, so I'm in a pickle - as I'm sure many many people here are! Thanks for the motivation - I'll keep you posted!

So please forgive me if this is redundant, but what treatments are you currently using? I came off of Enbrel at the end of March, and staying pretty clear. Slowly, I am starting to feel my aches and pain.

No, that's completely ok! I'm sure people don't keep a list of what everyone has tried or are using! LOL...Currently, for my scalp I have a UVB comb, Derma Smooth, I use T Gel, and mineral oil. I also have a scalp lotion that is rx, but I forget the name of it. (I'm too lazy to get up LMAO!)....For my skin - I use Aveeno Lotions, protopic and elidel (for around my eyes and ears and forehead) and an ointment that begins with a Triam.....something. I also have just began tanning.....Somebody in another thread stated that she did Enbrel for 3 weeks and her scalp p went AWAY.....WHOA!!! How interested am I in that?!?!? I'll keep you posted! Good luck!

[tonka42100]

On the issue of safe treatments...they all have some risk. I would suggest that you look through the wide array of treatments. Make a list of the ones you think might be best suited to you and your lifestyle,symptoms,medical conditions,etc. Then,take your list to your local pharmacy.Almost all of the national chains can print out a copy of the write up that accompanies the meds involved in treatment. It should give you the side effects,uses,and lots of other useful info that you can then take up with your dermatologist. I work in a pharmacy and have lived with p for 15 yrs and I wish more patients would investigate treatment options.
It's not an easy thing to live with,but,it has taught me to be more understanding of others in many ways. Education is key to finding the right treatment for you! I am currently on Enbrel and I know many others who are also. Some have had amazing results,mine have been very good so far as well. Keep smiling and best of luck to you!

[lpagano]

Hi Jillian1507:

My mother's p went into remission for aprox 20 years. Howeve when it came back it was with a vegance. Keep the faith, the treatments have improved so much in the last few years. Sometimes you need to just keep searching and trying things until you come up with something that works.

[SCCatman]

I think some people go into spontaious remmission, but I think it is rareonce triggered, P does not tend to go away on its own.

I think if you can get clear using meds or whatever, it can stay gone indefinitly.

There is a new drug, IL10 that with one treatment can make plaque P goaway for good. One treatment only covers a very small area, it only works with plaque, and is a bunch of shots in a small area (10 - 15 injections for knee), so it has a lot of limitations. There are some related drugs being tested, hopefully they can give the same results over larger areas, for other types of P, and in places where ahots are nto a goo doption.

Dennis

[docbirkman]

I have had psoriasis for about 18 years. I still have it but not like I did.
Back in 96 my Derm sent me to the UCSF Psoriasis Treatment Center for about a month of daily treatment (6-7 hours per day Mon-Fri).
I had "P" covering the entire left side of my face; a little on the right, inside my ears- outside my ears, scalp, neck, chest, back, legs, feet, arms and hands (It would have been simpler just to say-"everywhere" because it really did cover most of my body. It seems like I was one big plaque, nothing else).
I felt like I was sub-human and I just faded from much social contact for many years.

I was treated with the Geckerman Treatment after trying so many different things and being taken off methotrexate for a period of time.

Wow, I could not believe the results I got, even to this day because of it.
However, eventhough I was happy and relieved from much of the suffering, the damage was done to my self esteem. I just feel so messed up from it.

I still have "P" but it just covers the entire tops of my hands, elbows, a little on my arms but not completely covering them like before. I also have it on my knees and very little on my face (just where my sideburns are....)

So, needles to say- I am happier about it but not completely happy as my hands bother me every single day. I use my hands in the work I do and their quite important to me. I make orthotics, orthopedic shoes, shoe modifications for foot dissabilities etc... I do have to work with chemicals that probably don't help my situation but I know this industry so well.

I also wanted to say that I am sorry I have not always stuck around here.
It is good to be here again and I really need to be here.
To tell you the truth, I kind of suffer from severe depression from all of this. I feel like psoriasis has really taken my life for a ride and I really desire to slam on the brakes and take control.

It is just good to be here and I hope I can develop some friendships as well as offer some friendship and support to anyone that needs it from me.
Thanks for listening and I really hate to complain about any of my problems.
Thanks

[ohno1more]

HI docbirkman !
Glad you're here ! Go ahead..."slam on the brakes and take control" and if that means "complaining" let it rip !
When I suffered from depression I never wanted anyone to know. I didn't realise how many people would have been happy to help me carry my burden.
By the way, I'll be needing orthotics soon...maybe I'll end up with something you made !
What treatments are you currently doing, if any ?

HI Jillian 1507 !
Sorry for my rudeness in not responding to you first, I got confused as to what I was doing !
Just wanted to say there's LOTS of positive stories here. I got scared when I first came here "cause of all the problems & suffering that seemed to jump out at me...but then I started seeing the successes & uplifting stuff.
I don't have any big success to report ( YET ! ) except it looks like "getting behind the wheel" and "taking control" of P and one's approach to it seems to lead to good things !

[lindsay1982]

My grandmother had a friend who had psoriasis and did light treatments for a few years and eventually went into remission. It's never returned. Other than that I've never heard of a complete permanent remission, but perhaps that's because people with psoriasis don't usually talk about it, which is why this board is such a great opportunity for us all to share.

[wildflowerAnn]

Raydon,
Again your posts give me encouragement. I have to make a sticky note and put it on my mirror. "You have to take the bull by the horns and fight this disease." I was just thinking of retiring this afternoon, being so sick of being sick. Thanks for shaking me out of my "I quit" mood.
Ann