Husband of Sufferer, New and Need some Help in CA!

** Originally posted by BrentRT **

Hi there, I happened across the foundation today much to my surprise and relief! My wife is suffering from what I would imagine to be very very severe Psoriasis..it covers her from head to toe, extremely red and inflamed (often leading to bleeding)...she's young, beautiful and we have a 3 month old son...we've just moved back to Southern California (Orange County) from Brasil (She's Brazilian and speaks little English as of now)..I could use any help you have including but not limited to the following...come one, come all!
- any materials I can read to get me educated and taking control of her diet (I just ordered JOhn Pagano's book)
- any clinics, doctors or resources in California?
- any 'list' of foods that we can eat or avoid?

We've been together for a year and a half but now that we are here in the U.S., I need to do as much as I can to help...thanks in advance to all of you..
Brent

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6 replies. Join the discussion

** Originally posted by Mikel **

Hi BrentRT,

Welcome to the boards & I'm sorry that your wife is having a tough time due to Psoriasis.

I would suggest that she should see a dermatologist as soon as possible.
I'm sure MikeK will come around soon and share some helpful information specific to CA.

There are lot of treatment options and all are listed on the NPF Website:
http://www.psoriasis.org/home/learn03.php

All the best and do come back and let us know how she is doing.

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** Originally posted by MikeK **

Hi Brent,

Welcome to the board. :cool: Nice to meet you. I'm sorry to hear that your wife is going through such a rough time. :( (sigh) Thank you for being there for her.

I'm at work ( which means that I shouldn't be here :rolleyes: ) so I'm going to have to keep this brief.

I don't want to alarm you, but based on your very brief description it sounds like your wife may be suffering from a very rare but very serious (it can be fatal) form of psoriasis called erythrodermic (http://www.psoriasis.org/about/psoriasis/erythrodermic.php). If she is in fact erythrodermic (you'll often see erythrodermic psoriasis abbreviated as e-dermic here) then she needs to be seen A.S.A.P. by a derm who knows something about psoriasis and not a cosmetic dermatologist (the kind of derm that we sarcastically call Dr. Botox here). She also should not be relying solely on Dr. Pagano's recommendations. Here's a link to a thread that discusses a dermatologist named Gerald Weinstein:
http://www.psoriasis.org/forum/showthread.php?t=34596&highlight=weinstein. (It also has recommendations to two other LA area derms, but I would see Dr. Weinstein if I was in your wife's situation.) Dr. Weinstein is on the NPF's medical board:
http://www.psoriasis.org/aboutus/inside/medical_board.php.

Sorry for the rushed response.

I hope this helps. I'll post some additional comments and suggestions later on today when I get home from work.

Mike

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** Originally posted by BrentRT **

Wow, thank you both for such a quick response..it's certainly comforting to know that I can get some information and resources here in California. I really do appreciate just this information to get me/us started...I will get on it ASAP!

keep it coming and thanks for the compassion!
bt

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** Originally posted by BrentRT **

I just took a look at the e-dermic info and it does not look as bad as that but she is covered head to toe in scales...oddly enough, when she was pregnant with our son, it was so under control that it basically cleared up for almost the entire pregnancy, not one flare up but now that our son is here it is back with a vengeance...we are also trying to make sure that anything we do does not get passed along during breastfeeding...i really am so grateful to have found this site..
xbt

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** Originally posted by MikeK **

Glad to hear that she does not appear to be e-dermic.

She probably has plaque psoriasis (http://www.psoriasis.org/about/psoriasis/plaque.php).

A lot of woman clear while their pregnant. Unfortnately, their psoriasis sometimes flares out of control after they deliver. It sounds like that's what's happened to your wife.

Following Dr. Pagano can't hurt, but I suggest (SuzanneT's negative experience notwithstanding) that you try to get your wife an appointment with Dr. Weinstein. The fact that his patients are also seen by a resident means that a second pair of eyes will be examining your wife.

The safest treatment for someone in your wife's situation is UVB light treatments ( http://www.psoriasis.org/treatment/psoriasis/phototherapy/). Light treatments can be a pain (literally -- some people have been burned by them) because your wife would have to go for treatments three times a week for several months for treatment. (You may also run into insurance issues -- the NPF has an insurance advocacy service that goes to bat for people who are having insurance issues.) Home light units are available and are often coveredy by insurance (usually after a deductible). Unfortunately, not everyone responds to light treatments so most doctors and insurance companies generally insist that most patients undergo their initial light treatments at a doctor's office. Some people have posted here that they've been able to convince their insurance company (sometimes with some help from the NPF) to convince their insurance company to pay for a home unit without their having to get their initial light treatments at a doctor's office.

There's an interesting discussion (http://www.psoriasis.org/forum/showthread.php?t=25479) about nursing mom's using a medication called Enbrel (http://www.enbrel.com or http://www.rxlist.com/enbrel-drug.htm)). Enbrel belongs to a relatively new class of medications called biologics: http://www.psoriasis.org/treatment/psoriasis/biologics/. The biologics have only been available for approximately 10 to 15 years. They're very expensive (so you may run into insurance and/or co-payment issues) and they have potential side effects that range from unpleasant to severe. Because these medications are so new, their long term potential side effects are not yet known. Most people report being pleased with the results that they have seen from using a biologic medication. Unfortunately, there have been a handful of posters who've developed some serious health issues while using a biologic medication. (More about that in a minute.) Most of them understandably blame the medication that they were using, but there's no way to know for sure. Knowing what I know I wouldn't hesitate to use a biologic medication. That said, I would exhaust all other options -- such as light treatments -- before using a biologic medication.

As I mentioned, a small number of posters have developed serious health issues while using a biologic medication. The biologics include:

The jury is still out about the effect that these meds have on pregnancy or nursing mothers. I have a friend who became pregnant while on Enbrel. She delivered a healthy baby boy. :) I have another friend who stopped taking Enbrel six months before she and her husband got serious about trying to become pregnant. She too delivered a healthy baby boy. :)

There are several other biologics that are currently in late stage clinical trials that seem very promising. Many of us are excited about the results that people are seeing from a new medication -- CNTO 1275 (its scientific name)/ Ustekinumab (its generic name)/ Stelara (its brand name) -- that hopefully will become available in the not too distant future. It's already available in Canada and in Europe. Here's a link to one of the threads where we discuss it: http://www.psoriasis.org/forum/showthread.php?t=21813&highlight=1275.

The bad news is that all of the biologics have some potentially severe side effects associated with them. Enbrel is probably the one biologic that most people post about here. There have been a small number of posters who've sadly posted about serious health problems that may or may not be related to Enbrel. (Most of them blame Enbrel, but there's not way of knowing for sure.) Fortunately, the number of people who've developed serious health problems while on Enbrel are so few and far between that their stories are easy to remember and find. Sadly, Bill (bluewater) developed Lymphoma shortly after he started Enbrel. He very understandably blamed Enbrel. (Sadly, his screen name has been deleted. Since he no longer posts here, so there's also no way of knowing how well he is doing. I hope and pray that he's o.k. I'll give you a link to the thread where he shared the sad news of his diagnosis later on in this post. Sadly, Karen (Kiki223) developed liver cancer and several other serious health problems after being on Enbrel for all of five weeks. She posted that her doctors concluded that her health issues were cause by Enbrel. She doesn't post very often and we haven't heard from her in a while. I hope and pray that she's o.k.) I'll also give you a link to the thread where she discussed her experience with us. That being said, here's the links to those sometimes very sad discussions:

http://www.psoriasis.org/forum/showthread.php?p=226418#post226418

http://www.psoriasis.org/forum/showthread.php?t=3414;

http://www.psoriasis.org/forum/showthread.php?t=4919; (Tiffany posted an update. The problems that she experienced turned out to be UNRELATED to Enbrel. Here's a link: http://www.psoriasis.org/forum/showthread.php?p=62631#post62631.)

http://www.psoriasis.org/forum/showthread.php?t=16949.

There are several posters who've posted about having severe allergic reactions while on Remicade. Here's the links to two of those discussions:

http://www.psoriasis.org/forum/showthread.php?p=140981#post140981;

http://www.psoriasis.org/forum/showthread.php?t=18975;

http://www.psoriasis.org/forum/showthread.php?t=17891.

Several people have experienced neurological problems while on a biologic medication. Deb (MrsPriz) discusses her experience in this thread: http://www.psoriasis.org/forum/showthread.php?t=23028. Tom (tpd70) and MaryJean (MaryJean713) discuss their experiences in this thread: http://www.psoriasis.org/forum/showthread.php?t=24030.

Mariov5415 reported that he developed Optic Neuritis while he was on Enbrel. His screen name has been deleted, so we don't know how well that he's doing. I hope and pray that he's o.k. He discusses his experience in this thread: http://www.psoriasis.org/forum/showthread.php?threadid=9823.

A biologic medication called Raptiva (http://www.Raptiva.com) was recently pulled off the market around the world because three patients developed a fatal brain infection after using Raptiva for approximately three years: http://www.psoriasis.org/forum/showthread.php?t=32698&highlight=Raptiva.

Some insurance companies require a medication called methotrexate (MTX) ((http://www.pdrhealth.com/drugs/rx/rx-mono.aspx?contentFileName=Met1257.html &contentName=Methotrexate&contentId=342) as initial treatment. MTX can cause birth defects so it's usually not prescribed to woman during their child bearing years. MTX is actually a form of chemotherapy that in lower doses is used to treat both psoriasis. It's a very serious medication. It has a lot of potential side effects -- up to an including liver failure and death. (I'm not telling you this to scare you or to discourage your wife from using any treatment, I'm telling you this because I believe that a fully informed patient makes the best patient.) Because it can cause liver problems, patients have to undergo frequent blood tests to check their liver fuction. Some doctors require an liver biopsy after their patients have been on MTX for a certain length of time. As I mentioned, people who take MTX cannot drink alcohol. MTX can also cause foliate deficiency so that's why most doctors tell their patients to take folic acid (http://www.cdc.gov/ncbddd/folicacid/index.htm) on the days that they don't take MTX. MTX is used as a treatment for Juvenile Rheumatoid Arthritis and there are several parents who post here whose children are on MTX. (In some cases since they were toddlers.) A lot of adults who post here are also on MTX. Most of people report being pleased with the results that they get from MTX. More imporant, fatigue and nausea seem to be the two most common complaints. Sadly, had two posters (both adults) developed serious health problems that may be related to MTX. Liz was diagnosed with kidney disease. (Here's a link to her story: http:// http://www.psoriasis.org/forum/showthread.php?t=9785&highlight=kidney+disea se.) Sadly, Midnight needed a liver transplant. (Here's a link to her story: http://www.psoriasis.org/forum/showthread.php?p=39721#post3972.) We used to hear from Liz every once in a while. (We haven't heard from her in a long time. I hope and pray that she's o.k.) She has her good and bad days. We haven't heard from Midnight since she shared her very sad experience with us. (I hope and pray that they're both o.k.)

Again, I'm not sharing these very stories to scare you or to discourage your wife from using using a treatment that might help her. I'm letting you know about them so that both you and your wife can make a fully informed decision concerning her treatment options. It's important that your wife find a treatment that both works for her and that you're both comfortable with. (That's why its important that she a doctor who is someone other then Dr. Botox.) Knowedge is power and a fully informed patient is the best patient. As I said, we're fortunate in that the number of people who've posted about developing serious health problems while treating their psoriasis have been so few and far between.

Here's a couple of suggestions (in no particular order) that will hopefully give your wife some relief from that this awful nightmare that she's been living with.

<li>Taking a bath with Aveeno oatmeal soak (http://www.aveeno.com/productDetail.do?prodid=3640).</ul>I find that the kind of soap and laundry products that I use makes all the difference in the world. Anti-bacterial and deodorant soaps, for example, tend to irritate my psoriasis and make it drier and itchier then it already is. I've had similar problems with detergent and dryer sheets, etc. ( I've even had problems with Dreft and that's marketed as being safe to use on infants' and toddlers' laundry! :eek: ) I haven't had any problems since I switched to "free and clear" laundry products. And, here's a link to a previous discussion about psoriasis and soap: http://www.psoriasis.org/forum/showthread.php?t=13629.

I'm sorry that this turned into such a novel. You're probably suffering from information overload. :rolleyes: I hope that it helps in some small way. Good luck. Keep us posted. Let us know if you or your son have any other questions and please don't be a stranger.

Mike

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** Originally posted by BrentRT **

Mike, I am overwhelmed not by the size of the email but by the generosity of your time and kindness in doing so, there is much here to absorb and pass along to my wife and we are really going to take our time and go thru it tonight and tomorrow and start to see what changes we can begin to make. Dr. Weinstein sounds like a great first step and we are committed to making as many changes as we can with food, environmental factors, etc. This board and especially your and the other Mike's replies give me great comfort. As I mentioned we've just moved back here from Brasil, and this is her first time living in the US and I was feeling a bit adrift in how to deal with it all. I am not sure what to do about the insurance since we're in the process of adding her to mine right now so all of it will be out of pocket until the insurance kicks in and even then, it's a pre-exisiting condition I would think so, we have a lot on our plate with it.
I may be so bold as to come back and ask some follow up questions as I go thru this in great detail, you've been so generous with your time and are so knowledgeable, I will try not to impose to much but will likely seek you out. Thanks again and I will post our progress...
xxbrent

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