My life with Pustular Psoriasis

[visrael22]

Hi, when i 1st developed Pustular Psoriasis in 2002 through 2003 was the worst time of my life. My left hand and foot worst case possible. The pain with pustular is unforgiving. Since the skin is shedding every 4 days to the normal of 28 days..in a 4 day period i maybe got 3 or 4 hours of relief. When patients talk about flare up's, pustular is a non-stop flare up. You name it..i did it. Creams made it worst and so did uv lights and laser. I was on stelara, which i had to check my liver function every 30 days..no relief and i stopped it. I sold my home in 2003 and rented a hotel on the beach for a month because my new house that i was having built wasn't ready. I sent my 2 children and my 90 year old father-in-law to stay with my mom. In 2 weeks i was clear of the most horrible thing i ever went through. It is stress related. My kids were teens and my father-in-law was a lot to care for. Now in 2020 with all we are going through with covid-19, i am 64. My husband is 77 and has had problems with diabetic ulcers on his foot. I noticed a few blisters on the heel of my foot early this year. so with all of this going on psoriasis is back on the left foot and it is spreading at a alarming rate. The flare up's are very hard to deal with. I did see my Dr and of course they gave me the cream..that's a no-no. With some medical issues at my age it's very hard to sit in the sun. But i must say, i used calamine lotion and it is a life saver. I have a jacuzzi in my bathroom. I put baby oil in it while i am in there. Then when my skin is dry i put thin layers of the calamine lotion on my foot.. let it dry and keep doing this until u don't feel anything. Also before i go to bed i use aveeno night time lotion for sensitive skin and i put it all over my feet. I don't rub it in, i let it sit on the skin. I must say, my case is not good and it is not going away. But it pretty much stopped the flareups that most people would never understand. I would love to go back to the beach for a month. But with covid-19 im afraid. I wish all of you patients with this horrible disease to do yoga exercise anything that can get you stress-free.

[jiml]

Hi Visrael22 and welcome    to the forum I haven't suffered with pustular psoriasis but do know its terrible if you do suffer with it. It sounds extreme having to sell your house to enable you to get to the beach for a while and get clearance

Is there a way you can safely get to the beach again and get some relief. Aren't there any quiet beaches in Florida with few people around. I know here in England I can find beaches near me that few people visit where I go when I want some sun without the risk of catching covid 
Have you tried other biological drugs that may work for PPP 
Have a browse through the forum and if you have any questions don't hesitate to ask meantime you might like to read this old thread Back Into Hell

[Kat]

Welcome!

Yes it is a horrid disease and with the pandemic going on it's very stressful times which doesn't help. I had some luck using Taclonex (prescription) which is an oil and it has helped me stay.... functional I guess. It doesn't clear me up but when things start to take a downward turn I use it and it seems to keep me from having a bad flare. But mine is mostly scalp psoriasis so the oil seems to work best there I think. I like Aveeno lotion as well. Coconut Oil is also very good.

Do you take Vitamin D? I ask because you mention that the sun helps and you can't get out in the sun right now. It might be something to consider.

I hope you notice an improvement soon!

[Fred]

This may be of interest to you visrael22 Imsidolimab for generalized pustular psoriasis phase 2 data

I hope you manage to get your stress levels down soon. I'll skip the yoga myself though. 

Welcome to Psoriasis Club by the way. 

Fred.

[KatT]

Hi Visreal22 

Welcome to the psoriasis club!



The link Fred included in his post is interesting and promising for those who suffer from PPP.  

Stress can be difficult to manage, especially in this time.  Have you looked into natural remedies or discussed with your doctor for something that may help reduce stress?

Hope you find something that works soon

[Wooley]

Hi Visreal22 and welcome to the club.....

I developed pustular psoriasis in April 2017 and experienced many of the symptoms you described too.  Like you creams didn't really do much for it and I went through a round of UV which just made me feel like my feet were on fire!!!  I then went onto Acitretin 10mg a day and had to have three monthly blood tests to check my liver function.  I have stopped taking this drug now for around a year, although I still have a supply 'just in case' I ever get a flare up.

Completely agree and firmly believe that mine was caused by the stress and anxiety I was going through at work along with the stress and anxiety a lot of us suffer as we get older.  I did have counselling and went on a 'worry' course to try and put things into perspective which did help to be honest and I have learnt to manage stress and anxiety a little better since then.

I am lucky enough to be in remission at the moment, but I have also been fortunate enough to remove most of the stress, caused mainly by work, out of my life now, moved to a warmer climate (although I am not one for lying in the sun all day), it has been a positive change for me, not just for psoriasis but for my mental wellbeing too.

Really hoping that you can find some respite with this awful disease soon.

Take care

Wooleyb

[Trampledrosie]

Figured I would take a shot and see if there’s still any palmoplantar pustular folks out there!

[Fred]

Figured I would take a shot and see if there’s still any palmoplantar pustular folks out there!

Always worth a try Rosie, but visrael22 only made this one post in 2020 so I doubt she will answer as she has never been back.

It's so disappointing when this happens but "pustular" is so rare, but please don't give up trying to reach out to others. I'm only answering to try and help and we need more people with pustular, so keep trying. If we all give up there will be no one to talk to.

[Trampledrosie]

Figured I would take a shot and see if there’s still any palmoplantar pustular folks out there!

Always worth a try Rosie, but visrael22 only made this one post in 2020 so I doubt she will answer as she has never been back.

It's so disappointing when this happens but "pustular" is so rare, but please don't give up trying to reach out to others. I'm only answering to try and help and we need more people with pustular, so keep trying. If we all give up there will be no one to talk to.

Yeah it super sucks. I put a frozen package of sauce in my sock earlier hahaha

[Forest Walker]

Rosie's posting about pustular psoriasis may catch the attention of someone else who has it and who's just finding our club for the first time.  Your experiences will surely help someone else while you seek help for herself.  So glad you found us, Rosie.