Please Help Me!!!

[pmb123]

Hi to all!  I have been suffering from the hand and foot psoriasis called Palmer Plantar psoriasis for 10 months now. I have been in a constant flare to where iI can barely walk and use my hands because of the pain where the skin just splits and tears off in huge hunks 7 layers at a time.  I am a school cook so you can see that poses a serious problem for me. I just had my first Stelara shot on April 6th. I had read wonderful things about this drug that it even worked within 48 hours after injection. Well it has been just over 2 weeks now and I have noticed no improvement at all. Does anyone out there suffer from this type of Palmer Plantar Psoriasis? This pain is killing me!

[Hidden]

Hello there!  

You must be desperate for some improvement, that sounds horrible.  Psoriasis and patience don't really go together do they?  Bad psoriasis makes me crave instant results. 

However I've been doing a little bit of internet wandering ..... looking at the the manufacturer's site and some other forums and it seems like the 2nd shot is when quite a few people see a difference.  And even though Stelara can work quite quickly for psoriasis, some have had to wait a little longer for results.

Have you had your 2nd shot yet?  I hope you see some real improvement .... looks like you're on a good drug so your dermatologist is looking out for you.  Please let us know how it goes.

[pmb123 in reply to Hidden]

Thank you postle2! This gives me hope! I am due for my second shot in 12 days. My husband said that because mine is so severe that maybe it will take a little longer. As you already know, a day seems like a year in our lives when we are suffering from pain and embarrassment with this disease.

Thank you again postle2 for responding to me! I will keep you posted in the coming weeks!

[Hidden in reply to pmb123]

Yep, I just did a quick sweep of forums etc. and I too got the impression that the more severe the psoriasis is, the longer you might have to wait to see results.   

I don't have much experience of psoriasis ..... until last year when it all kicked off big time.  But I didn't have palmar pustular which is why I hesitated to reply to your post.  However I can definitely relate to the desperation for something to just WORK!  And also it is hard to keep the faith that something will work .... I started going bald due to psoriasis and a part of me believed that the big bald patches would never recover.  Amazingly the hair did eventually start to grow back and then there was no stopping it.  So I guess if my psoriasis does ever get severe again it'll be easier to tell myself that it is likely to calm down in time / with the right treatment.

I bet a ton of people have seen your post and secretly wished you well but just didn't have experience of PP plus Stelara to share.  

[pmb123 in reply to Hidden]

Thank you postle2. I truly was starting to feel very alone in this. I am new to these forums. Maybe nest time I post something I should put the name Palmar Plantar Hands and Feet Psoriasis as the heading so possibly it will grab someones eye that maybe suffers from this rare form also. I so appreciate you helping me and your kind words! I am so glad that you are doing much better and that your hair came back in. I had a flare that was all over my head and came down onto my face about 10 years ago during the time that my husband and I along with our 7 year old son had my mother living with us. She suffered from Alzheimer's disease and I was at a maximum stress level at that time. It is so terrible to have it on your head and it sounds like yours was just horrible! I am glad that your medications and diet have helped you with your battle. I will keep you posted on my progress!

[flow4]

Oh pmb, I'm so sorry you are suffering so much, and sorry you haven't had other replies! I know palmar plantar psoriasis is rare, so maybe no one here has it, or the few that have it haven't seen your post yet. Hopefully someone will be along soon who has better ideas than me... My only suggestions are things you have probably already thought of: talking to your doctor again, increasing your pain relief temporarily, and 'detoxing' your diet so you eat only fresh food and no sugar, wheat, dairy or additives, to see whether some food is triggering a particularly bad reaction. I do hope you get some relief soon!

[pmb123 in reply to flow4]

Thank you flow4. I was wondering why nobody was responding to my post. I am at my witts end. I don't wish this form of nightmare on anyone but I guess I thought maybe someone out there could help give me some encouragement.  Thank you again for responding. Does diet really have an effect?  I am definitly going to try this! I will do anything at this point!

[flow4 in reply to pmb123]

I have found giving up refined sugar has had a noticeable effect. I did it as a sponsored thing in November, and then when I ate sweet things again in Dec, I had dramatic inflammatory responses (swollen knuckles within an hour on one occasion; hangover type symptoms and swollen knees the next) so I decided to stay off it... It was tough for the first few weeks - there's sugar in SO many things - but now I'm used to it, and i feel better, and I have less inflammation (though that could also be the meds) - so it's worth it! I'm not 100% sure about the wheat/bread, but it does *seem* to cause IBS-type symptoms, so I'm steering clear of that mostly too...

Like you say, when things get tough, I'll try ANYTHING!

[pmb123 in reply to flow4]

Yes flow4, I am ready to try anything at all! Thank you very much! I have given up sugar, breads, starches such as rice and pastas in the past and I always felt better. When I would start adding it back into my diet I would begin to feel just sick all over. So I will take your advice and cut that out of my diet!

[healthygenes]

Hi pmb123,I also have psoriasis on the soles of my feet for about 15yrs nothing moves it, lotions and potions galore, however I'm sorry I know nothing about your meds, but this week I bought what I thought was hemp oil from amazon,it was £11-90 and called Biopurus, it's fabulous, my feet haven't been this good for years and years, you can take it internally also, it will do your poor hands as well,I am so sorry I can't offer you any more but even as a standby I would recomend this to anyone, by the way don't be put off I think it says canabis oil oil on the label, but just read up on it and see if it would help, best of luck with your meds.

[pmb123 in reply to healthygenes]

Thank you so very much for the tip healthygenes! I will check into it!

[lotsoissues]

I have palmar psoriasis and it's been treated with Enbrel and methotrexate.  It comes and goes but looking better

[pmb123 in reply to lotsoissues]

I was on methotrexate for years for arthritis. My blood counts started crashing (and I was only on a low dose) so i had to stop taking it. It was after I stopped taking the methotrexate that I developed this rare form Palmar Plantar Psoriasis. I wish that I could still take methotrexate because I felt so good on it.   So I am just taking the Stelara shots now. I have only had one and will take a second this wed. Do you have the Psoriasis on your hands and feet?  How crippling is it for you? I hope that the Embrel works for you. I had a reaction to it after the 4th shot. I got a plaque psoriasis that covered everything down from my neck along with the other on my hands and feet. Let me know how you do with it! Thank you for your post lotsoissues! 

[Hidden in reply to pmb123]

Pmb, seeing when the PPP broke out on you - it broke out on my foot after I stopped taking methotrexate and Humira. After researching, I mentioned this to my dermatologist - that I thought one or the other drug may have CAUSED the PPP. He marked it off as coincidence, but I'm not so sure. At this point I had changed rheumatologist (the first one had prescribed & discontinued those drugs) and he made no comment one way or the other. The timing seemed fishy to me, especially since I had never had any form of psoriasis before that.

[pmb123 in reply to Hidden]

I have heard that Methotrexate can cause these outbreaks. I agree that these drugs can cause reactions such as these. It makes sense that when taking these drugs your body is undergoing a huge adjustment and then when you stop abruptly I think your body gets a little upset and your immune system just reacts to it! I wish that it would please stop reacting now! Thank you Seahorse02 for your insight!

[Tgdn]

Hi there just joined and saw your post,sorry u r having such bad time.i was told (gp) that I have palmoplantar pustular psoriasis,the other doc. Said eczema don't know which but I know what u going through and I hope very soon u start to have and c improvement.i read that these treatments take some time until there is improvement,but hopefully u r already in much improved condition,as for me personally I have not tried stelara but I've tried only one injection of humira for my bones(it didn't work for pain) but noticed in few days that dry skin on my feet disappeared,but because I stoped it (I think) I've got the masive flare up of psoriasis or eczema don't know.maybe I m wrong but I wish u very quick and lasting improvement

[pmb123]

Thank you Tgdn! I know that the shots take time. My dermatologist said that I should see results by August. So it takes about 4 months to see any improvement with these new drugs. I will be patient. I hope you are feeling better soon as well!

[Hidden]

Hi pmb123, I feel your pain! I have PPP, initially diagnosed as sero-negative rheumatoid arthritis (mainly my left foot and ankle), which became palmoplantar pustular psoriatic arthritis when I developed pustules on the bottom of my left foot this past April. It is June now and the entirety of the sole of my left foot is covered with it working its way to the top. I believe it has already infected the toenails. It has about a fourth of my right sole and is working toward the top from the arch area. My left palm is completely covered and is scattered over my right hand as well. I have plaque psoriasis - that broke out after the PPP - under my breasts, under my arms, in the crotch area. There are scattered pustules on the fronts of my thighs and just a few between the knee and ankle. Since Oct 2015 when the dr thought it was plain RA I have tried Humira - did nothing, and methotrexate which made me really ill and my eyelashes fell out. After breaking out with PPP I tried Enbrel but had huge swelling with pain at injection sites, so had to stop that. Currently am waiting on insurance to OK Cosentyx, and am also taking 10mg prednisone and Soriatane plus Clobetasol. They are not doing any good. Unfortunately my dermatologist, who was wonderful in coordinating with my Rheumatologist, retired last week and I am waiting to get in to see the new one. Plus this past weekend the PPP spread considerably overnight. I am almost panicky at this point but I know it won't do any good. Sometimes - like now - anything on my left foot hurts plus I want to hide my hands in public - or not go out at all. Fortunately I do stay at home at lot as I retired after spinal surgery in 2012. I am 56 years old. This PPP is horrible - I sure didn't see it, or anything like it, coming.