New Here

[lulu'smom]

Hi!

My name is Nancy, I'm 38 and have 2 kids, 6 and 19 months (both girls). I've had psoriasis since 1985, and up until the past couple of years, it was more of a nusiance v.s. a real issue in my life. I'd always had knee & elbow spots and my scalp has been really bad. Since that was hidden by my hair, it just didn't seem to matter as much.

In July 2004, following the birth of my 2nd daughter I had a major flare of guttate psoriasis. In addition, my scalp was just plain horrible. This was so frustrating, because my p TOTALLY clears when pregnant. I attributed this flare to hormones etc. I also developed PA and it went from a slightly stiff back to not being able to turn my neck or walk in just a few short days.

Well, by December I was a total wreck. I went in and was put on Enbrel. I was still breastfeeding, but had done my homework by contacting a leading research Dr (David Hale) who indicated the molecular wt. of enbrel was too large to pass into breast milk. I had been willing to live with it in order to continue breastfeeding. So I was glad for his information.

I started Enbrel on New Year's Eve, and my clearing was really slow. But, by April or so I noticed great results and by summer I was clear and wearing *gasp* tank tops again!

The great results continued until this December. I had a serious of events that contributed:

break in enbrel due to insurance lapse
strep throat that lasted 6 weeks (daughter had peri-anal -diaper rash- strep and kept reinfecting us without knowing what it was)
longer break in enbrel due to antibitiotics.

Anyway, I'm back on Enbrel, just finished my 14th shot with such minimal results I'm annoyed. I do remeber it took a long time. But how come my body doesn't remember how great it worked LOL!

I got a new Rheumy, and she is switching me tu Humira next week.

Anyway, that is my long story. I have been struggling with depression, not being able to get dressed in anything (I'm 100% covered, only clear on my face - for now). I feel like no one really understands and my poor husband is just sick of hearing me complain.

And.. my kids don't get why I can't pick them up or play on the floor. it sucks.

So, that's me.. flakes & all. Nice to meet you! I'm glad to have ofound this!

Nancy

[SandraJean]

Hi Nancy,

Welcome to the boards, although I'm so osrry to hear of the problems you are now having with psoriasis and psoriatic arthritis. It must be very difficult and with such young children too. There is a wealth of information on the boards and I hope you have a chance to read some of the posts.

I have both p and pa and have been in a clinical trial study for Humira since Nov. 2003 and have had very good luck with it. I've heard where some start different meds and sometimes after a while they no longer work, or sometimes with a break in the meds the particular med you were on might not work as well. Maybe that is what happened with the Enbrel.

On weekends the boards are generally slower and this weekend alot of our members are in Washington DC to do advocacy work at Capital Hill on Monday. They may show up on the boards over the weekend and will be able to give you more help too.

Good luck with the Humira and I hope it will work as well as Enbrel did in the beginning for you. If you have any questions about Humira, please feel free to pm me.

Welcome again. Take care,

Sandy

[PJ66]

Nancy,
Just wanted to say hi and welcome. Hopefully the humira will work for you. Don't worry, everyone here understands what you are going through. We all go through the same thing.
Polly

[RichJ]

hi nancy,
sorry i can't help much but welcome to the p family. you will met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good night all

richard

[tmartha]

Glad you found us - I'm sorry you're going through such a rough time. Hopefully the switch to Humira will help, it sounds like it is helping many people.

I'm 38, 4 kids, p since about the same time as you but it's not too bad (knock wood), pa hit 2 years ago. In January I told my rheumy that I agreed with her diagnosis - that she given me in May. :o Was trying to deny it - I worked (poorly) through the pain, crashed at home, nothing left for my family and not much left of me...guilt, anger, depression...

Do you have other support there - family, friends? This forum is a very helpful place - and there may be a support group in your area - which would be hugely helpful. Your rheumy should also be able to guide you in this area - depression is often a component of the disease - try not to be hard on yourself about it. You know, there was another post today......

ok, found it - and it's worth quoting here - from PJ Leary:

"Welcome to the Boards, there are lots of helpful people here, and tons of good advice. Everyone who has psoriasis, with the exception of some children who do not remember not having it, goes through the same feeliongs you and the others are talking about. Remind yourself that you are a vicitm of a disease, you are not responsible for it. That will help some.

"Talk to people and tell them what it is, tell them they can't catch it. Do your research here and learn as much as you can. Post your questions, and we will answer them. Learn about the cause of the disease, this is a metabolic auto-immune disease. The problems are sometimes successfully treated at the cellular level with some medications called biologics. They are very expensive, and only used where other more traditional therapies have failed, for the most part."

(I can't figure out how to copy quotes so they have that neat blue box around them - sorry, PJ, and thank you!) But it's good stuff.

Again - glad you're here. Keep posting!
Tani

[adamalexa]

This really is a great place to vent and hear some sympathetic replies from people who share the disease. I am 42 and was diagnosed with PA 4 yrs ago after the birth of my 2nd child. I remember those days of feeling so achy that I couldn't even get on the floor and play with my kids. I think even worse that the physical, was the emotional guilt of feeling so poorly that I didn't even WANT to play with my kids. What kind of mother feels this way??

I also had very little desire to be intimate with my husband, who is just the best guy in the world. I felt so used up by the end of the day, that I had nothing left over for him. Between the rash and the aches, it is hard to feel sexy. What kind of wife feels this way?

I started taking Enbrel about 10 days ago and feel better than I have in many years. I think I have had PA for closer to 7 years, and just wasn't diagnosed till 4 yrs ago. I'd say that about 90% of the achiness is gone, with the exception of my neck. I feel like I am 20 years younger!! I hope it last a long time! I feel much more playful and less short tempered with my kids.

Good luck with the Humira - I hope it works quickly for you and you are feeling better soon.