My Psoriasis Journey

I have recently been diagnosed with Psoriasis, specifically Palmoplantar Pustular Psoriasis. This means that it is only my hands and feet that have visible symptons. I know that I am "lucky" that unlike some psoriasis sufferers it isnt over all my body and generally people wouldnt know that i have it, but this is one of the harder types to treat as it can be more resistant to topical treatments ie. steriod creams.
I have had this for over 8 years now but due to many misdiagnosis and me sticking my head in the sand about it, I have only just started treating it. The only times I have had it in remission was during my pg's. I have had flare ups were my foot has ended up with fissures across the sole and walking was a very painful thing.
As an added bonus ;) I have also starting showing signs of psoriatic arthritis, which thankfully atm is only in my thumb knuckles, but I know that eventually it will spread and as with the psoriasis itself I can only hope that I respond well to treatments and am able to get good remission periods.
I will be seeing a Dermatologist at the end of this month and a Rheumatologist at the beginning of April, so until then I am playing the waiting (and lots of goggling) game.

Currently I am only using Daivonex (a synthetic Vitamin D cream) which has calmed the severity of my current flare, but as yet it doesnt appear to be stopping the flaring.
The rest of my daily routine is soaking the affected skin and gently exfoliating the excess skin away and lots and lots of moisturising. At the moment I am using a Vaseline & Glyercine mix which is doing wonders for my dry heals.

One of the most interesting things i have read is the relief some people get from changing their diet and certain aspects of their daily life.

I will keep this updated and if anyone has any information, it is always welcome.

Thanks for reading

XXX

I have severe eczema, particularly on my hands, and i also really struggle with it. I often get fissures and staph infections (just had 2 courses of antibiotics for one infection), i wake up biting my hands until the bleed i'm so itchy etc etc... Sometimes i really get very down about it all.

Anyway, just wanted to let you know that i've been having UV-B therapy (UV light therapy) on my hands on and off for 2 years now - it has about a 60ish% sucess rate in eczema but over 95% in psoriasis. I have found it to be fantastic, better than constantly using extremely strong steriod creams which have thinned my skin beyond belief. in general you can have approx 200 treatments in your lifetime because of the risk of skin cancer, but there is minimal risk for only having the palms and soles of hand/feet done because it is thicker skin (they have a hand& foot only machine where i go).

Speak to your dermtologist about it - it has made such a difference in my treatment.

I have a lot of general information on eczema, not sure how much overlaps with psoriasis, but would love to hear what you do & don't to manage the condition and how you cope with having it?

It's a catch 22 isnt' it? For as bad as I've had it, I've never had PPP - I have had P since I was 13 and I had a nasty guttate flare in June last year which had me 80% covered. My father gets PPP and Pustular P - which is just awful. Has it ever been suggested that you take Methotraxate for it? I started on it at the start of November and haven't looked back - I would be down to 40% now I reckon and improving all the time. It's hard though when treatment is such an individual thing - I tried the natural path with an elimination diet and natural ointments, but with no success - I just didn't respond to it, so that's when I started the MTX. I use topical tar-based ointments as well as they seem to work best for me.

There are some interesting links between lifestyle and p that I've read too, I can link you if you like? And have you come across the National Psoriasis Foundation in the US? There is nothing locally based in Australia (which is a pity) but this a great resource.

Yael - :hug: Oh darl that sounds painful and dreadfully annoying. The itch gets so unbearable sometimes.
I am hoping the derm will look at UVB treatments as I really want to avoid steriod based creams as not only do they thin the skin over time, but if you stop using them it can cause a rebound flare which is generally worse than normal - not fun!
Im looking into a moisturiser atm which is made in the UK (am probably going to have to get it from Ebay) called Doublebase which from other sufferers of skin conditions comes highly recommended. One thing I am currently doing is eliminating skin contact with SLS products as they can cause skin reactions, if you dont do this already it might be worth a try.
Trillian - :hug: to you as well, that sounds like a very nasty painful flare. I have been researching mtx and the like, there is a good chance with having the arthritis that that is going to be suggested, but Im still bf and I really really want to make it to 2yrs, that said I know I cant sacrifice my health just to reach that goal as both my children need me to be as active a mother as I can be. Have you had any side effects from it? Thats another concern I have as where I currently live I have absolutely no support network to call on.
Im not sure if diet changes would work for me, but I know that alcohol and too much sugar and caffiene cause me to flare. Have you used acupuncture at all? From what I have read while it may not clear the p. it can help reduce stress which is a great trigger for it. Any links you have would be great as the more knowledge I have the better I can live with this.
And yep, found both the US & UK societies, I like the UK better. :)
Good luck with the mtx and hope it puts it into remission for you :crossfingers:

I feel for you girls.

I've had skin probs with psoriasis since I was a kid...have scars on my feet from one particularly bad time!

My scalp is the worst affected place - it cracks and bleeds, freaking disgusting. A restricted diet and NO chemical application whatsoever (shampoos, hair product, hair colour etc etc) has worked for me on my scalp.

I have a steroid cream for when it flares up on arms (also have scars from it on wrists), hands, fingers etc which seems to work however nothing helps when it flares on my BREASTS. It feels so degrading and makes them ssssssooooooo ugly. Blech!

I also get it on my nipples, vagina (especially when pregnant with more discharge).. it is horrible.

I wanted to add that i am doing meditation/relaxation for another health issue, and it has had really big side benefits for my eczema. My dermo is in fact highly encouraging of this, and says their is documented evidence that meditation improves skin conditions.

Pro-biotics are another thing that might work. I'm currently part of a probiotic study to prevent allergies/skin conditions in babies. DD is having her 1yr allergy testing tomorrow. But funily enough when i took the HUGE doses (much more than commerically avaliable here), between 36-40 weeks (assuming it was that, problem with skin coniditions is there is so many variables it might not have been, or i might have been on the placebo), but my skin cleared up and i was able to go off the light treatments for 2 months after i had DD.

Morgan, I've not had any side effects from the MTX and my blood work is still normal, so I've had a great response with it. It is possible that it will be suggested to you, but you have to be sure about your future plans for babies too as you cannot fall pg while on it because it will cause birth defects (not might, but will). But I would recommend to anyone to try all other alternatives first before heading down that path because even if you don't get side effects, it does put a heavy burden on your liver and kidneys and it robs your body of folate too

Hi Morgan78. Not sure if this is helpful, but a really close family friend used a herb called "Buchu" to treat his psoriasis. It is widely grown, harvested and used in South Africa (where I am from) and it was incredibly effective in treating his condition (had it all over his head and face and it all but disappeared!). By all means persue the medical intervention that you are seeking, but in the meanwhile it may be something you want to consider as a supplement? I imagine the herb would be available in Australia in either tea or tablet form. Perhaps it may be worth a visit to a naturopath to explore these options while you wait for you appointment? Big :hug: and I hope you find the right treatment that works for you x

Thank you Sambo, Im always interested in hearing about alternative treatments.

Had my weekly checkup today and the arthritis has now spread from my hands to my feet :cry: and I was on antibiotics for bronchitis which has caused my skin to flare :wall: April cant arrive quick enough so I can see the specialists.

Morgan78, so sorry you have had such a bad run and that the arthritis has spread :(

Thinking of you and hoping that April comes around really quickly! :hug:

That's awful that you've had a flare and the PsA has spread. I think you should give Sambo's suggestion a try, because if you can find something that works that isn't going to be as ravaging as the MTX, then go for it. But the PsA will need addressing with something heavy duty though.

Trillian & Sambo :hug: Thank you both so much. :)