Need diet/supplement advice from BTDT. Thanks!

[tjlip]

Hi all! I spent a lot of time last night reading through these threads and learned a lot! My husband has psoriasis (nearly all over but newly diagnosed) and was going to begin PUVA and the dangerous meds that go along with it, but we both felt it was wrong... I can't believe some of the side effects. (Soriatane and Oxsoralen). There has to be a better way, right?? I got Dr. Pagano's book today and have done some research online. So much is conflicting.
We spent some time at a healthfood store and $50... I was thinking that maybe some of you could help me out so we aren't starting out at the bottom. Here are some of my most pressing questions:

Tried and true diet tips? What should he truly eliminate?

What should we start to eat for better 'skin health'?

What supplements are must haves? In what dosages?

Have any of you had luck using tanning beds, moderately of course?

And other tips you can think of would be great!!!!

A little info about him/us: He is 40 and last spring started to get a few spots in ankle area. This progressed to feet (they shed constantly- huge painful sores, need to wash sheets almost daily due to skin...) Then his hands got it really bad and at least two nails. He has a couple of spots on back and butt, and most recently on legs. He has been using a variety of prescribed creams since onset. They haven't done much more than hold it at bay, and not even that...
As I said earlier, we both feel that PUVA is extreme. I don't think he should take anything that would make him an unsafe blood donor for 3 years! One even stated that if he ejaculates inside pregnant woman it is uncertain if fetus can be harmed.... come on!!! This is awful!

It is possible I am taking this too hard. We are under a considerable amount of stress right now and I am 8 months pg with twins. I am so worried about him and about what this is doing to his self concept. We are selling our home and closing on another... I just feel that I need help from those of you who have knowledge! We are getting nothing from the derm. He never even explained side effects and he knows I am expecting!

Sorry to ramble, I will stop now. I do hope to hear some specifics soon! Advice, opinions... all are welcome!

Thanks,
Jenna (very hormonal and determined to help husband heal!)

[GitOverIt]

Hi Jenna....I'm assuming you read my post on "clearing" from slippery elm?

so let me jump in here....(in case you didn't I shall give a link at end of this post)

Tried and true diet tips? What should he truly eliminate?

Dr. Pagano says no sugar! :( no nightshade members; potatoes, eggplant, peppers (except black) tomatoes or tobacco!

He pretty much outlines what to eat and what to be careful of in the book!

What should we start to eat for better 'skin health'?

For all health :D fruits veggies chicken, some beef he says none I think but I'm allergic to chicken) turkey, lamb, fish. check out his cook book too maybe recipes on line?

What supplements are must haves? In what dosages?

he pretty well lays it out in the book and I do in my link I'm going to post.... :p (its so long)

Have any of you had luck using tanning beds, moderately of course?


I was going to look into them last fall when I started clearing...maybe I will this year...others have had good results....(you can go together :D )

sounds like he has the ppp
Arl and granny have that type hands and feet...they will be along to tell you...
I know Arl cleared with baking soda and olive oil soaks in the bath tub!

here is my link to how I got clear....this might not work for everyone but we have lots of things to make life easier if not better...and we are always finding new things...welcome by the way! don't hesitate to ask or pm me....DH can come on here too you know! DH (dear hubby)


http://www.psoriasis.org/forum/showthread.php?t=12172

[misales]

I've been through a lot of the heavy P meds myself. My real relief from severe plaque has been the ultraviolet lights. A lot of things help me like moisturizers, eating better, etc....but the thing that really did it for me was the UV lights (narrowband).

My derm wanted me on soriatane with them but my tri-g's were too high so I never got them and just did the lights. I got a really heavy dose...4X per week but withing a month I was clearing incredibly and clear within 2 months.

I'm a fan of getting a heavy application of UV narrowband if you can take it and if it don't work then add the heavy stuff. I also had the correct attitude and used salt baths and moisturizers a lot during this regimine.

Theres a lot of good advice and anything you do to eat better, etc. may very well be helpful if you are working with meds or not. It's a tough thing to fix and we all seem to react different so it's a little bit of a journey too.

[GitOverIt]

OOOooops! Jenna, one thing I forgot to mention which I think is very important is getting a blood allergy test...3/4 months before I started Paganos diet regimen, my doc suggested the test, because I was having so much itching...best thing I ever did!
it turned out I had triggers to 12 foods...went on the 3 month elimination diet and no itching....I wasn't even thinking about those allergies when I decided to do the Pagano diet! and within 2 months was clear! I think now that I look back the combo of the diet and food elimination did the trick!

you might want to see if your GP will give it to you or DO (Dr. of osteopathy) here is the clinic she sent it to in MA I live in IN. my insurancce paid for it ...I think it was $250

[MikeK]

Hi Jenna,

Welcome to the Board! :cool: Nice to meet you. I'm sorry to hear about your husband's diagnosis and that he's going through such a rough time.

First, congratulations on being pregnant with twins! How exciting for you both!

My husband has psoriasis (nearly all over but newly diagnosed) and was going to begin PUVA and the dangerous meds that go along with it, but we both felt it was wrong... I can't believe some of the side effects. (Soriatane and Oxsoralen). There has to be a better way, right??Has your husband given any thought to going for UVB light treatments? They're aren't any medications associated with those. Some people have been burned by them and they don't work for everyone, but they can be a safe and effective way to treat psoriasis. The only other potential problem associated with light treatments is that your husband would have to go three times a week for several months for treatment. He also might run into insurance issues. (The NPF has an insurance advocacy service that tries to assist patients with any insurance issues that may arise.) Home UVB units are available and are often covered by insurance. (The NPF's insurance advocacy service also tries to assist people obtain coverage for home units.) As I mentioned, UVB treatments don't work for everyone so most doctors and insurance companies generally insist that people undergo their initial treatments at a doctors office before approving a home unit. (You need a prescription for a home unit.) Some people have posted here that they've been able to successfully waive that requirement. Here's a link to the NPF's discussion of UVB treatments: http://www.psoriasis.org/treatment/psoriasis/phototherapy/uvb.php.

It sounds like your husband's psoriasis came on very suddenly. More then a few people have posted here that either their psoriasis or their child's psoriasis was triggered by some sort of infection (usually strep) and that they psoriasis was the only indication that they had an infection because they were asymptomatic (i.e., no sore throat or fever in the case of strep) for the infection. To further complicate things, many of those same people have also reported that the psoriasis did not respond to treatment until the underlying infection was taken care of. Because of that potential issue, your husband may seriously want to get tested for strep. (Insist on a culture, because the so called "quick test" is often unreliable.) 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;

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

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

You mentioned:I got Dr. Pagano's book today and have done some research online. So much is conflicting.
We spent some time at a healthfood store and $50... I was thinking that maybe some of you could help me out so we aren't starting out at the bottom. Here are some of my most pressing questions:

Tried and true diet tips? What should he truly eliminate?One of the most frustrating things about psoriasis is that something that works for one person may or may not work for another. There are some people who post here who find that the things that eat and drink causes their psoriasis to get worse. There are other people (myself included) who do not notice any change in their psoriasis due to diet. Before your husband goes on what very well may be a wild goose chase, he might want to get tested for allergies to see if there is any food that he is allergic to. If the tests show that he's allergic to something then he can eliminate from his diet. If the tests are inconclusive, then he can try to experiement. You mentioned that you bought Dr. Pagano's book. I haven't read it, but, from what I've read here, I understand that Dr. Pagano recommends that people with psoriasis avoid nightshades. Nightshades include tomatoes, potatoes, peppers and egg plant. Tobacco is also a nightshade.

Some people have posted here that dairy products cause their psoriasis to flare. Others find that sugar causes problems.

And, recent studies suggest that there is a link between Celiac's disease and psoriasis in some patients. People with Celiac's disease can't eat foods with gluten. Here's a link to an article,from the July/August 2004 issue of Psoriasis Advance, about the possible link between psoriasis and Celiac's disease:http://www.psoriasis.org/publications/advance/200406_gluteninterview.php.

And here's a link to a previous discussion about psoriasis and Celiac's disease: http://www.psoriasis.org/forum/showthread.php?t=10301&highlight=Celiac%27s+disease. (My response in this thread will take you to yet another discussion on the subject. Unfortunately, we haven't heard from most of the people who participated in those previous discussions in a very long time. In one of my responses in the previous discussion, I also give a link to the article about Celiac's disease. That link no longer works but will redirect you to the link that I gave you above.)

You mentioned:A little info about him/us: He is 40 and last spring started to get a few spots in ankle area. This progressed to feet (they shed constantly- huge painful sores, need to wash sheets almost daily due to skin...)I don't want to alarm you, but the shedding of skin is one of the symptoms that is associated with a very serious form of psoriasis called erythrodermic psoriasis. Erythrodermic (e-dermic) psoriasis requires very aggressive treatment because it people who are e-dermic are vulnerable to infection. Approximately 200 people die each year from psoriasis and most of those people are e-dermic. (Here's a link to the NPF's description of Erythrodermic psoriasis: http://www.psoriasis.org/about/psoriasis/erythrodermic.php.) In my opinion, before your husband embarks on whatever treatment regimine that the two of you decide is appropriate for him, he needs to rule out the possibility that he is e-dermic. It sounds like his current derm isn't very helpful in that regard. It's time for a second opinion. What city do you live near? Perhaps someone who posts here can recommend someone. You can also find a derm by using the NPF's physician's directory. The directory is basically a list of derms that have contacted the NPF and expressed interest in treating psoriasis. It's not an endorsement by the NPF, but it's a great place to start. It's searchable by zip code. Here's a link to it: http://www.psoriasis.org/treatment/directory/.

I hope this helps. I hope your husband feels better soon.

Once again, congratulations on the babies.

Good luck. Keep us posted and please don't be a stranger.

Mike

[Dulane]

I will agree with everyone here so far, but I will add that candida is a factor to be considered, as some of us had the infectious variety of P and it wasn't strep that brought it on.

Also I am going to quote one of our graduates of 'Psoriasis No More'.

This is Jor-El's plan to get healthy and get control over P -
http://www.psoriasis.org/forum/showthread.php?p=174439&highlight=Jor-EL#post174439

We're rooting for your husband, it is wonderful that you are by his side and supporting him through this.
:)

[ARL]

Jenna,, I did see you read the thread on baking soda and pure olive oil,,,I posted on this subject again,,,my legs wa very bad,,,my hands and feet were horrible,,,,I soaked everyday or in the evening,,,FAITHFULLY FOR 30. MIN FOR A COUPLE OF MONTHS AND I AM CLEAR,,, the itching was helped immediately,,,,, at first he'll see anywhere he has the P,,,it will be very red after the soaks,,,that's ok,,,that goes away,,,,some people give up,,, I didn't,,,and tell him not to give up,,,just tell him try it,,,hopefully he'll see an improvement..And don't forget the pure coconut oil ( not greasy at all,,,drys very quickly)

Congratulations on your twins,,,and both of you are sure stressing,,,calm down and everything will work out... Once the twins come,, both of you won't have time to think of anything but the babies.... :)

Oh and don't forget,,,try and use a soap that has no chemicals,,,some pure natural,,,( but read the ingredients,,,, I use Dr. Bronner castile soap,,,it contains no additives and is all natural. Good Luck to the both of you.... I'm sure he'll find something that works,,,, Sally and Dulane will help you ...

[ARL]

Dr. Bronner's Magic Soaps 18-in-1 Hemp Pure-Castile Liquid Soap, Aloe Vera Baby-Mild, 16 fl oz (1 pint) 472 ml
Amazon.com
$4.89
Dr. Bronner's Magic Soaps 18-in-1 Hemp Pure-Castile Liquid Soap, Tea Tree, 16 fl oz (472 ml)
Amazon.com
$4.89
Dr. Bronner's Magic Soaps 18-in-1 Hemp Pure-Castile Liquid Soap, Almond, 4 fl oz (118 ml)
Amazon.com
$2.79

There are many natural soaps,,,carefully read the ingredients..... I also don't use anything that contains alcohol.

[tjlip]

I was so encourged this a.m. when I saw there were responses to my posts!

I guess I will just print out your advice, thoroughly research the links, etc. - and compose a binder of info.
I will encourage DH to keep a food diary, although this may be tough! I do prepare most of the food, so I can be as accurate as possible.
He soaked his feet and hands in a warm water/tar solution last night and said he will start baking soda/o. oil baths. (Any particular amounts??)
We willl definately look into new derm and allergy testing, possibly strep test, etc.

Last night after my post I found some links for 'miracle products'. Of course I am a skeptic, but wondered if any of you have tried the following:

Kalawalla
Psoriaid Tablets
Miraderm

I will definately keep popping in! I am a teacher but haven't been able to work yet this school year due to high risk pg. That gives me time to do this for DH! He usually works 11 hour days and wouldn't have the time to do this research. He also would not have been able to make the PUVA treatments anyway, so we really did need an alternative!

thanks again,
Jenna

[misales]

If you dh is doing uvb my advice is that compliance is important. I failed them the first time because i didn't give it a fair shot.

The second time I was 110% compliant and man did they work. Let me tell you this that if he is severe and trying to just fix the skin and not PA and is receptive to the lights I don't think there is a better feeling to see them work.

When I did it I really had to compromise my schedule but dang it was worth it in the end.

I hope he comes out ok, it's so much nicer being clear!

[RichJ]

hi jenna,
sorry i can't help much but welcome to the pfamily. you have meet 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

[grannyfranny]

Hi Jenna and welcome,,,,,Congratulations on your twins, that's so exciting. I had two boys,,,14 months apart and I often wondered if it would have been easier to have twins. You are going to be vey busy!

I have the pustular psorisais only on my hands and feet. I have responded to an antibiotic,,,,which no one understands.

The others have given you wonderful advice. I would try "standing on my head" before trying any of the drugs. Some of them do-or-can have bad side affects,,,,however, everyone does not respond the same way. Everyone responds differently to psoriasis drugs. I am one that can not take any of them,,,I've tried several and always get sick.

Start with getting your DH on a very healthy diet and the UVB,,,,that would seem to be the least dangerous.

Good luck to you both and be sure to tell us about the babies. :) do you know waht they are,,,boys, girls or both?
I am a Granny of 3!

[Al]

Grannyfranny, I noticed that your P responded to antibiotics. Have you looked into whether or not you have mycoplasma? I'm sure you already know about it but if not, google it.

Allan

[GitOverIt]

sounds interesting.....

http://64.233.167.104/search?q=cache:e626-L1MMagJ:www.digitalnaturopath.com/cond/C670329.html+mycoplasma+psoriasis&hl=en&ie=UTF-8

[grannyfranny]

Al,,,thanks.
Sally,,,,,it is interesting. I have been reading about mycoplasma,,,I have never heard of this.

Would my PC know about this?

Al,,,,the reason I am on an antibiotic was a staph infection brought on by Enbrel and MTX.

I was on Ancef by IV for 7 weeks. Then Keflex---500 mg.2xdaily for 4 weeks.
now I am on 250 mg, 2xdaily. I see my surgeon next week and will find out what's next.

The only other problem I have,,,,that I know of,,,,is osteoarthritis.

[LottieBay]

Soooooo, If You have mycoplasma, (and how do you find out?) What can be done? I mean, I read the list of things that can be caused by mycoplasma and I have several. I'd like to learn more about this nasty little bug! I have
Leukemia, fibromyalgia, diabetes, psoriasis and arthritis among other pain in the a** ailments.

Margaret

[GitOverIt]

http://www.digitalnaturopath.com/cond/C670329.html#H7


Recommendations for Mycoplasma Infection:
Drug Antibiotics Doxycycline, tetracycline, clindamycin, lincomycin, and ciprofloxacin were found to be effective against Mycoplasma incognitus. But erythromycin, the antibiotic most commonly used to treat mycoplasma infections, was not effective and penicillin, streptomycin, gentamicin, and others also had no effect. Treatment is very long term compared to the typical course of antibiotic use.


Lab Tests/Rule-Outs
Test Platelet Culture Testing for mycoplasma by PCR can result in false positives, which should be confirmed by culture. PCR testing may be useful as a screening test. Once Mycoplasma get inside the cells as a parasite it is very difficult to cultivate them in-vitro. It takes at least 10 days to grow the culture.

[johnma1956]

Also I am going to quote one of our graduates of 'Psoriasis No More'.

This is Jor-El's plan to get healthy and get control over P -
http://www.psoriasis.org/forum/showthread.php?p=174439&highlight=Jor-EL#post174439
:)

I am on the Perricone diet. It is very similar to Jor-El's plan. Only more focus on protein-consumption.
This diet worked for me. P cleared up entirely.

[Dulane]

I finally got to doing a little research on the Perricone diet. It is pretty interesting.

There's a quick example here.
http://www.everydiet.org/perricone.htm

Thanks for the tip!

:)