Psoriasis??? - Let's chat

[auntie k]

I have had Psoriasis for about 38 years...and I'm only 41.

This past week while I was at the dermatologist with my FIL....I asked about the new drug Enbrel....OMG - it's $30,000 per year!!!

Just curious - is anyone using it....and if not, what are you currently using to keep yours in check. If you are, tell me about it.

I'm on 8 tablets of Methotrexate a week. Have said to heck with any creams or ointments - such a waste of time!

Also, what's the worst reaction you've ever had when someone notices it and can't help themselves but to blurt out some rude comment?

 

[powellrj]

my oldest DS has it and the worst he ever had said to him were the kids that said he had AIDS when his arms were all broken out.

He has found what helps him the most is old fashioned pine tar soap and shampoo. He has tried most of the presciption medication and none of if helps as much as the pine tar. When he is having a flare-up, he also has found that the tanning bed helps. His dr. told him that she has never suggested anyone use a tanning bed before, but she was amazed at the results!

Good luck, its not pleasent.

 

[Pooh67_68]

I do not have it real bad, its only on my elbows, so I have never had people say rude comment.

Yes I have used Enbrel, but I have a prescription plan so its not real expensive.


http://www.psoriasis.org/publications/advance/free.php?PHPSESSID=fa609aac3eac03b55df67ea36364fd68

 

[dadtoagirl]

Gold Balm medicated ointment anyone?

 

[auntie k]

I do not have it real bad, its only on my elbows, so I have never had people say rude comment.

Yes I have used Enbrel, but I have a prescription plan so its not real expensive.


that's interesting...I wouldn't think they would give it to you if you only have it on elbows...my understanding it was for severe cases....and according to the derm. - insurance companies aren't easily accepting it.
Did it give you good results?

 

[auntie k]

Gold Balm medicated ointment anyone?

Thanks for the suggestion Dadtoagirl, but Gold Bond won't touch this stuff!

 

[Pooh67_68]

that's interesting...I wouldn't think they would give it to you if you only have it on elbows...my understanding it was for severe cases....and according to the derm. - insurance companies aren't easily accepting it.
Did it give you good results?

Yes it gave great results, cleared it up in only 2 days, but remember its not a bad case of Psoriasis.

As for my insurance, back when I was getting the cream we had a really good plan. If I would try and get it now they probably would refuse(the plan as been changed a couple of times).

 

[auntie k]

Yes it gave great results, cleared it up in only 2 days, but remember its not a bad case of Psoriasis.

As for my insurance, back when I was getting the cream we had a really good plan. If I would try and get it now they probably would refuse(the plan as been changed a couple of times).

Was your's Elidel? Enbrel is injected (once a month I think) not a cream.

 

[*NikkiBell*]

My mother used Enbrel injections for Rheumatoid Arthritis. It nearly killed her about a month ago because it lowers your immune system and you can develop infections such as pneumonia. While the percentage of people who experience this is small, it still can happen. She was hospitalized for over a week and nearly died as a result of this medication. We are looking for other treatments now.

 

[Aurora63]

I deal with it too, mild to moderate, they call it. I have it on my scalp, elbows, and various other patches here and there. Luckily the really bad places are not in public view (i.e., my scalp). Coal Tar shampoos have worked best for me.

I'm also trying Evening Primrose Oil as a supplement, I read it has had good results for people with many different skin ailment. Let you know what I notice as I get further into it.

 

[vacanut]

I was recently diagnosed with this. I've noticed after I swim in the pool I get outbreaks, is this normal?

 

[hygienejean]

I have it too... I would say mine is mild to moderate...somewhere in the middle there. I mostly have it on the edges of my hairline, not all over my scalp. I also have it on my lower back and a few tiny spots on my tummy. The only noticable spot is one near my hairline that is down on my temple a little. I have had a couple people mention that they have acne too... Oh if only!

I use Tar shampoo and Dovonex. I can't say that they work great b/c I still have it! It seems to worsen when I am pregnant. (which I am now!) My next step is the UV bed at my Dermatologists office. It is a little different than a regular tanning bed.

I too would LOVE to hear about any other remedies!

 

[DawnCt1]

I have had psoriasis on my feet (sides and parts of the bottom) for 9 years. We started with Rx Lac Hydrin and Ultravate. Moved onto Dovonex and Tazorac. All work for a while and to a point. The most effective treatment was PUVA which was a soak in psoralin and then exposure to UV light at the dermatology office. I actually achieved a 9 month remission. Sunlight of course improves it but it has to be more intense sunlight, Florida or the Carribean. Add salt water to that and that provides good improvement as well. I actually bought a UV light box on line, used the psoralyn capsules as I did at the derm office and gradually increased my exposure. The light obviously wasn't as strong as the physician's light BUT I didn't spend $75 per week in co pays and 5 hours driving to and from the appt. For the severe dryness that is a hall mark of psoriasis, I like the lac hydrin cream (you can get it without a perscription now) and Bag Balm. Yup, the stuff for cows.

 

[DawnCt1]

I have it too... I would say mine is mild to moderate...somewhere in the middle there. I mostly have it on the edges of my hairline, not all over my scalp. I also have it on my lower back and a few tiny spots on my tummy. The only noticable spot is one near my hairline that is down on my temple a little. I have had a couple people mention that they have acne too... Oh if only!

I use Tar shampoo and Dovonex. I can't say that they work great b/c I still have it! It seems to worsen when I am pregnant. (which I am now!) My next step is the UV bed at my Dermatologists office. It is a little different than a regular tanning bed.

I too would LOVE to hear about any other remedies!

Psoriasis typically worsens during pregancy. Also, Beta Blockers, like Atenolol will aggravate psoriasis big time. If anyone with psoriasis is on a beta blocker, ask your md to switch your medication.

 

[skiwee1]

I have had for the past 10 years or so and I'm 43. It mostly comes up on my elbows, knees, and under the ankle. When it first flares I use psorcon, a steriod cream, twice a day. After about a week it is gone until the next flare up. Nothing over the counter works at all.

 

[Pooh67_68]

Was your's Elidel? Enbrel is injected (once a month I think) not a cream.

Ooops sorry about that I used a cream. Is that Elidel?

 

[sharbear]

My DH is on Enbrel. He has Psoriatic Arthritis (I hope I spelled that right).

He's has Psoriasis for maybe 7 years, I really can't remember. I don't know if it's severe, he has it on about 25-30% of his body.

Our insurance pays for the Enbel, I guess that they will pay if you have PA. His PA is doing much better, no new outbreaks. I'm not sure if it is clearing up his psoriasis.

 

[auntie k]

I was recently diagnosed with this. I've noticed after I swim in the pool I get outbreaks, is this normal?

The pool and sun used to help mine...but I took the psoralens and light treatment for years and also take methotrexate now, so when I get in the sun, I break out in a red "blotches". Not sure how much fun my DCL cruise will be when I really need to avoid the sun...we'll see!

Nikkibell - thanks for the input - that is what I'm looking for. More feedback from others is most welcomed

For those of you that have recently been diagnosed - whatever you do don't take steroids! They will clear it up to the point you can't tell you have it...but when they wear off - it will come back 4 times as bad!!! Mostly family practice doctors make this mistake - so stick with a dermatologist for treatment!

 

[crs7568]

My husband has psoriasis and it can be quite bad at times. I am always amazed at how many people feel free to question him about what is on his legs when we are at the beach. Usually he wears pants to try to cover it up and I know that it is a source of embarrassment to him. He has a moderate case and has never taken any medication for the condition other than creams that have been prescribed. A week of relaxation in the sun and salt water helps clear things up for a while, but the condition always returns. I would love to know of something that works to try and help him.

 

[vacanut]

The pool and sun used to help mine...but I took the psoralens and light treatment for years and also take methotrexate now, so when I get in the sun, I break out in a red "blotches". Not sure how much fun my DCL cruise will be when I really need to avoid the sun...we'll see!


I've had more and more break outs within the past 2-4 weeks, I figured it was due to the chemicals in the pool. I have terrible rashes on my legs, butt, arms and hands. The worst in on my butt!! I've been putting cream on it my dermatologist prescribed. I'm hoping in the winter it lessens up.