I am miserable!

I am new to this site. My father had psoriasis...mainly on his scalp and elbows. I'm getting ready to turn 61. I'm the only sibling in my family that has this affliction. Started years ago but just isolated patches on knees, elbows and scalp. 5 or 6 years ago I had a flare up that was pretty bad but NOTHING like I'm having now. It started after I moved to a new house. I think it was triggered by the stress of the move, issues with contractors, etc. I now have a pool but the drs. don't think it was related to chlorine. I got patches on the outside of my calves where I crossed my legs. I also had patches on my rear end and later the folds of my groin area. Went to derm and was given betametasone creme. Didn't work and condition worsened. He automatically suggested the shots which I felt was jumping the gun at that time. Went back and was worse so he put me on pred. 20 mg. It wasn't doing anything either so went to Mayo clinic. On Gen. Dovanex but ran out waitng for ins approv. Still waiting..out for 3 days now. Skin on back of calves , behind knees taught from dryness and very painful to stand and walk after lying down. Vani creme works for 5 min. but burns. Better after I walk around for a few minutes. It is scaring me and I cry alot the last few days. Swollen ankles and covered from neck to toe with scales and what looks and feels like severe sunburn. Don't think its PA just P. Anyone else having trouble with mobility like I describe? What can I do? Getting very depressed. Please reply. Thank you!

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Allesandra,

I'm so sorry to hear about the severity of your psoriasis and the misery you're suffering right now! I don't have the same type - mine is pustular psoriasis limited to hands and feet. I'm not sure I can truly help you, but I didn't want you to think that you were being ignored.

I've tried just about every topical out there, as well as PUVA treatment. I then started Humira, and soriatane (a pill), which cleared it completely. I moved to another state, my prescription for soriatane ended, and I then developed PsA, which flared due to a significant amount of stress. Unfortunately soriatane doesn't help that, so my dermatologist put me on a very low dose of methotrexate. Now that I have both under control, I've reverted to just the Humira and topicals.

I'm sharing this with you in hopes of reassuring you that just because you start a more drastic treatment (not the exact word I'm looking for, but I'm sure you understand), it doesn't mean that you have to remain on that forever. The main issue is to get the psoriasis under control so that you're not in pain.

As for a temporary fix for the extreme dryness, what type of moisturizer have you tried? I've found CeraVe to work best. My dermatologist recommended mixing it with the topical I'm also on in order to keep my skin from getting too dry.

Wish I could offer more - sending prayers that you find relief soon!!!

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Hi, sorry to hear you're having such a hard time with your skin, I've had P and PSA for 30 years now. Took me years to realize that good old cheap Vaseline is my saviour against the dry sore scaly buildup. Works for me: have a 1 hour long hot bath useing a light soap like Dove, let your skin soak then gently rub the scales away, it all literally comes off as you use a soft face cloth. Don't rub hard. Now after your hour is up dry off by just gently patting with a towel, very important part is with skin still damp /moist scoop out a big dollup of plain Vaseline, using your palms mix it together to warm it up making it spread easier, then smear it generously all over your psoriasis areas. put long Pjs on so best to do this before bed, climb into bed and you'll soon notice amazing relief of dry itch and soreness. It's not a cure but it sure is life changing relief. Next morning you'll notice the areas are white rather than bright red and raw. Do it every night and before long (a week) you'll have manageable psoriasis that you can live with. All this as long as you are not allergic to Vaseline. I used to have it so bad that when I bent over my skin would crack and bleed on my torso, this remedy changed my life. It may be simple and everyone may already know about it but I bet many like me never knew there was such a simple and cheap remedy. No one has to have dry sore thick scaly itchy skin if they do this!!!! However, never apply Vaseline to dry or dirty skin, then you'll get spots / zits. Must be clean and moist.

Worst thing I ever did was take vitamin B12, my Psoriasis went nuts and I could literally smell the B12 on my skin.

Anyway, hope this helps, sorry about typos and such, wrote this on my iPhone

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Thank you so much for responding. It made me cry again but sometimes a few tears take away some of the stress. I don't mean to sound too emotional but I am just a little overwhelmed by my current physical and emotional state. Until now I never dreamed that this disease could be so debilitating. I'm so sorry that there are so many people of all ages that seem to be suffering.
My dermatologist recommended a lotion called Vani creme which I found at CVS pharmacy. Prior to that I was just using Lubriderm for sensitive skin but it made me burn. My 1st visit to Mayo made me feel so much better as the derm. spent an hour and a half with me ( previous Dr. less than 5 minutes each visit and didn't really look at my body). Mayo did blood work and took two tissue samples to biopsy to rule out anything but psoriasis. All came back fine. I go back this week and will see what further treatment they recommend. Thanks for the tip on the vaseline. I'll ask my derm if I can use it with wharever else he prescribes.
I wish they had not started me on that vitamin D creme as I am still out. I live in N Fla and the weather has been in the 70's all week so I could have been going to the beach for the sun and salt water (altough the ocean would be quite cold). In the past this has helped clear up the minor patches that I have had for years. Creme says to stay out of natural sunlight! Thank you again. I am so grateful for this site!

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I can relate to how you are feeling. I have had
P for 23 years. I have never gotten used to it.
The stares still hurt but I am stronger now.
I keep reminding myself that I am not my
P. That I am much more than that.
I will try using vasaline tonight.
Hang in there.

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I have been where you are before. The only thing to clear psoriasis when it gets this bad is a trip to the dead sea in either Israel or Jordan. You must go for at least 3 weeks and it WILL calm your skin down. Some people get better results than others. I've made the trip twice and it's saved my life both times (quite literally the first time I was badly ertythrodermic). If you can afford it go. Hope this helps.
Also try using organic moroccan argan oil it really helps me.

Good luck

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Hi Allesandra ツ I'm so sorry you are having a miserable time right now. We so understand! If you have PsA, it will flare along with a p flare. It doesn't take much for me to ache all over.

Please look into an anti-inflammatory diet. Its nothing difficult, all you do is avoid foods that increase inflammation, which we have a lot of anyway because of autoimmune disease. That's where most of the pain & stiffness comes from. There are many foods that actually reduce inflammation. Try taking a fish oil supplement...I take 1000mg 4 times daily. Turmeric is excellent too.

There are good moisturizers too, like coconut oil, equal parts glycerine/witch hazel (alcohol free) that you can mix & spray on, vitamin e oil, olive oil, & some I'm not remembering. Pine tar products help a lot of people too.

This is a miserable disease and every little thing we can do adds up & can give us relief. Let us know what helps you.

Kay ツ

Ps, let me know if you're interested in anti-inflammatory diet and I will give you some links for more information.

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Thanks for all the posts! I have heard about the visits to the Dead Sea but I'm sure that right now that is financially out of the question. Wonder if there have ever been any cheap group rates for P sufferers!!!! Yes, Kay, I would love some links to anti-inflammatory foods! I'm trying to change my diet eliminating red meats, nightshades, most dairy and eating organic vegetables. Had seared red cabbage last night fresh from the garden. Read that it is anti-inflammatory. Also had fresh organic sweet potatoes. Where does one find the organic moroccan argan oil? Thanks again for all the replies! This site is really helping my mental health improve.

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Hey girl sorry for ur probs. I have a major scratch/pick problem can't resist it's like chocolate to me. Anyway after one of my zone out sessions I use a script called silver sulfanilamide cream. Comes in a big tub not expensive and it keeps soreness away, softens the scales and fights any infection trying to get in. I supplement with lavender oil cause it smells good relaxes me and the fragrance doesn't bother it. Just an idea but I'm new at this too.

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This forum has helped me a lot too! I've met some very nice people here who are very supportive & encouraging.

Here is a link to one of my posts with a list of all the anti-inflammatory foods I found.

http://www.inspire.com/KayFallon/journal/not-a-fad-diet/

Here's a few more links that were very helpful to me

http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet

http://www.wethechange.com/how-to-reduce-inflammation-in-the-body-and-why-y ou-need-to-do-this/

http://www.genesmart.com/pages/win_the_war_within/245.php

http://www.natmedtalk.com/f55/19281-alternative-answers-psoriatic-arthritis .html

That should get you going! There's lots of info out there.

Wish you the best!

Kay ツ

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Thank you so much!

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I was going to get on tonight and say I am Miserable and can't stand it. Then I read your post. I am so sorry to hear about what you are going through. The best thing I have found for my skin is to cover my self with a mixture of 1/4 vaseline, 1/4 vitamin E lotion and 1/2 baby lotion I put this in a bowl and use a hand mixer till incorporated. I put this on every morning after my shower. I also have problems with my hands so I use it all day long I pretty much carry it with me all the time. I am broke out in my hair and my eye's and face I use Prescribed meds plus vaseline all day and night. When I get broke out I can't seem to get rid of the spots they have been there for years. My ears are broke out right now and the left one it sounds like I have static in it. It is driving me nuts!! I have an appointment at Mayo with a dermatologist I hope I find something out for that. I hope you start to feel better soon. :)

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Starlab, that static sound in your ears has got yo be miserable! Has that ever happened before? Would be like to know what that is. My left ear has felt like numb just around the opening & that drives me nuts. I can't imagine what would cause that static sound. Glad you have an appointment.

Does the oil mix help your hands much? I have ppp & my hands have been so dry lately nothing seems to work. I've always had great results with eucerin cream, for the 15 years I've had this. First time it isn't doing the job. Been using olive oil, vitamin e oil, & coconut oil. Even that isn't doing much.

Your flare up sounds miserable too...aren't they always...but your eyes? I'm sorry you're having a rough time right now. Hopefully the Mayo clinic will help you past this. Winter time is always miserable for p.

Hope you feel better real soon

Kay ツ

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Hi,

I recommend buying Dr. Pagano's book" Healing Psoriasis". I'm on the 3rd chapter and so far everything he says about psoriasis and it's causes makes total sense. It's about healing psoriasis from the inside out. A few weeks ago I got some information on Dr. Pangano's diet and began following it and already I've seen a huge improvement with my lesions. I can't wait until I read the entire book! As you will come to see, topical prescriptions and biologics lose their effectiveness after a month or so and your lesions reappear. At least that's been my experience. I can't believe the huge improvement in my skin already! I have made up my mind that I'm going to tell my derm that he needs to read Dr. Pagano's book. Some people have cleared up in as little as a month, where others have taken up to 2 years to clear. But his regimen works if you follow it and don't cheat. His diet also helps with arthritis associated with psoriasis. You can purchase his book on Ebay or Amazon. Best wishes!

Debbie

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Thanks everyone. I did order Dr Paganos book on Saturday through Barnes and Noble and it should arrive today or tomorrow. I can't tell you how much I appreciate all of your responses and support. I don't know how I would've gotten through the last couple of days without it. You have been a godsend. My appt w/ Mayo is tomorrow. Still waiting on my creme refill that I requested last Wednesday and my insurance is holding up. At this point I won't refill it as my dr. may decide on another treatment. I was supposed to use the creme 2x daily for two weeks and it only lasted 1 week as so much of my body is covered. The insurance paid 844.00 for the one tube and my copay was 10.00. In my opinion they just threw away that $ if they weren't going to approve a refill for me to get the 2 weeks benefit that the dr. requested! I'm relly upset that I pay so much for my insurance and they are interferring with my treatment!! Enough for now. Thanks for letting me vent! You are truly wonderful people!

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My insurance company paid for whatever prescription my Derm wrote. If he wrote 1 tube once a week, that's what they paid for. I'd check with your doctor to see how often he wrote the prescription for. It may just be a matter of calling your doctor and asking him to write another prescription. That's what I had to do. One tube just wasn't enough for 2 weeks as I was also covered from head to toe with what my doctor thinks is guttate psoriasis. The insurance company filled the new prescription so I could get 2 tubes within a two week period.

good luck!

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My dr. did request a refill but the ins. company said that it was too soon and they would pay for it on the 27th. I can't afford 850.00 out of pocket right now or I would buy it outright. The ins. co. had to fax my dr. requesting extensive info for an over ride which my dr. has done but it could take up to 72 hrs for the over ride to be processed and sent back to my pharmacist. The request for the refill from my Dr was made a week ago Wednesday, I ran out of creme last Friday and still don't have an over ride. I see my derm tomorrow and will find out what gives. I'm hesitant to go through this again as it is a waste of time and money but most impt interfers w/ my scheduled treatment. I feel the same thing will happen again and it does not give my meds a chance to work. Very frustrating and talk about adding to stress and worsened condition! It is as though even if the Dr. requests the refill that they have to do extensive investigative research before believing that my doctor is correct that it is necessary! I'm contemplating walking into the ins. headquarters, totally disrobing and screaming "Now do you believe us???" but I'd rather suffer in my own home than in a mental institution or jail! But then again it may give me a good laugh which is the best medicine of all! Please don't think I'm crazy...just desparate for some relief right now (and this site seems to divert my mind from the itching!) My thoughts and prayers are with each and every one of you. Thanks for listening. Everyone has been so helpful and supportive at a time when I'm at my lowest.

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There's a topic on this website for itching and everyone says that using 50% glycerin and 50% witch hazel (non-alcohol) mixed together and sprayed on the body and scalp works wonders for itching. I ordered both from Ebay and am waiting to receive it. It's worth a try as it's inexpensive to purchase. Make sure the witch hazel is alcohol free otherwise it will sting and irritate your skin.

Debbie

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At mayo they think I have eczema and psoriasis which I guess you treat both of them the same. They just gave me stronger medicine. They think light therapy would help but of course I live in a small town so I wont be able to do that. I do go to the tanning bed and that does help. My ear they want me to see a ENT. I went to my regular doctor when I got back from Mayo for my ear they flushed it out and then gave my some drops that seems to be working.

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