New to the Forum, and wondering about support gruops

[teresah]

i've been teary-eyed reading through some of the threads so i'm finally going to write something...i was first diagnosed with severe gp (95% coverage) in 1990 when I was 20 years old. I started with goeckerman regimen treatment at UCLA and eventually moved to home UVB maintenance treatment. I had bad flares only every 4-5 years since 1990, all of which were successfully treated with UVB and topicals. until I had twin boys 2 years ago…

Since having the twins, I've had moderate to severe flares every other month, it seems. I’m sure it’s the stress of parenting, but recently I went from 40% to 75% coverage in a matter of days and have been increasingly depressed. My dermatologist saw me yesterady and was alarmed...took pictures and asked 2 other docs for consultation and everything. depressing. but she wasn't convinced it was p...thought maybe it was an allergic reaction to something i ate? so she gave me my first-ever cortisone injection to see if the inflammation would decrease…so far, nothing’s changed. i called her today and she wants me to wait til friday morning before considering starting me on UVB (i.e. admitting she was wrong).

anyway, it sounds like there are a lot of wonderful people on this forum, so I just thought i'd make an introduction and see where it goes. also, has anyone had any good experiences with joining a p support group?

teresa

[MikeK]

Hi Teresa,

Welcome to the Board! :cool: Nice to meet you. I'm sorry to hear that your guttate psoriasisrecently went from 40% to 75% coverage in a matter of daysFirst, it sounds like you need a new derm! Second, I'm not a doctor, but more then a few people have posted her that either their psoriasis or their child's psoriasis was either triggered by some sort of infection or gets worse whenever they have some sort of infection. Many of these same people have also reported that the psoriasis was the only sign that they had an infection because they were asymptomatic for the infection. To further complicate things, these same people also report that the psoriasis won't respond to treatment until the underlying infection is taken care of. Just about any infection can trigger an psoriasis, but strep throat is the usual culprit. You might want to seriously consider getting a strep test. Insist on a culture, because the so-called "quick test" is often unreliable. If the culture comes back negative and things don't start to improve then you might want to consider getting a blood test called an ASO blood test. Julia (who sometimes posts on the Parents and Caregivers Board) reports that an ASO blood test is the only reliable way to confirm that her daughter Amelia has strep.

Here's the links to some previous discussions about psoriasis and infections:

http://www.psoriasis.org/forum/showthread.php?t=7538&highlight=importance+strep+test. (Julia -- her screen name is AmeliasMom -- discusses the ASO blood test in this thread.);

http://www.psoriasis.org/forum/showthread.php?t=3074&highlight=presentation+strep;

http://www.psoriasis.org/forum/showthread.php?t=4988&highlight=uti.

And, here's a link to the NPF's discussion of psoriasis triggers: http://www.psoriasis.org/about/living/triggers/.

Finally, you asked: also, has anyone had any good experiences with joining a p support group?I recently started attending the NPF affiliated support group that meets in New York. I've only been to two meetings. I was only one of two people (in addition to the moderator) who attended the first meeting that I went to so it was kind of a bust. There was about a half a dozen people (in addition to the moderator) at the second meeting. That meeting was much more productive. There was a guest speaker who discussed haircare issues. Everyone seemed very nice.

I also frequently attend informal social gatherings that take place here in the New York/New Jersey/Boston area. (Similar gatherings have taken place in Chicago, Portland, OR, Miami, St. Louis, Cleveland and the San Francisco Bay Area.) Those gatherings are a lot more fun, because there's no set agenda. People come and go as they please. (The New York/New Jersey gatherings have become so popular that we frequently get visitors from out of town. We had as many as 30 people who've come from as far away as Los Angeles, San Francisco, Detroit, and Portland, OR.) (I've attended get togethers in St. Louis and Chicago.)

Even though the formal support group meetings are very different then the informal social gatherings that I ususally go to, I highly recommend that you consider getting involved with your local support group. I can't even begin to describe how awesome it feels to be in the same place at the same time as other people who are dealing with the same issues as me.

I hope this helps.

Feel better.

Keep us posted and let us know if you have any other questions.

Mike

[RichJ]

hi teresa,
sorry i can't help much but welcome to the p family. you have 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

[PJ Leary]

Welcome Teresa,

Nice to meet you. Please take what Mikek said seriously, strep is often the cause of a guttate type outbreak. Follow his lnks, read and learn.

That said, I also encourage you to reach out to a support group near you. You have nothing to loose and so very much to gain. If you go once and you hate it you never have to go back. But, if you don't go when it would have helped, then you loose out on a great opportunity.

Many psoriasis patients report that there is nothing like getting together with others who really understand their problems and concerns and don't judge them for the way they look. It can be a very powerful experience.

Check it out, and let us know!

Looking forward to getting to know you, don't be a stranger!

Regards,