Fighting PsA

Glad to find your board. After 6 months of testing I was diagnosed with seronegative RA last fall. Around Easter this year I noticed small "spots" on the bottom of my foot. Now June I have severe Palmoplantar Pustular Psoriatic Arthritis with other types of psoriasis scattered about. I am on my third biologic looking for the right one. 56 years old and knocked on my behind by this blow from life.

12 Replies

  • Hi seahorse02 so sorry u r going through this hard u r going through third biologic treatment until u find the right one,ironically I've got palmoplantar pustular psoriasis (first time in my life I m 48 now)as a result of starting and stoping humira for my ancolysing spondylitis,five mths. just shows how different we all r.i didn't try anymore biologic or any other immunosuppressant treatment,going through it with painkillers and exercise,and for ppp balms and creams(mainly eucerin).all of us in this forum know what u r going through and how hard it is,so I wish u find very soon which treatment works for u best,because once u find this somehow u get into a routine and of course u r going to have flare ups and remissions,but somehow at least me,I find it easy to deal with all of it now.

    I wish u best possible outcome with your treatment and condition

  • Bless's awful, wishing you well..x

  • Thank u Tgdn & Eileen01. Yes it's awful. Funny mentioned ur timing Tgdn. My first little spots appeared right after I stopped Humira & mtx for reheat we thought was RA. Derma marked that up to coincidence when I mentioned that was a side effect of stopping humira. That derma of 15+ yrs retired after 5-6 visits for this PsA, unhappy with new derma - too rushed & he misses a lot. Any references for a good psoriasis derm on N side of ATL appreciated!

  • Hi seahorse02 hope u r coping rheum. said that it's very unlikely that it was because I stopped humira,but I did a lot of research and found out that humira in some cases causes Ppps(like my case since I never had it before) or in other cases makes it worse or causes it to spread in new places.and since I didn't change anything in my diet or lifestyle at that time only logical explanation was that this was caused because I stopped humira.not worth talking about the cause anymore but I just hope it doesent come back anymore and that I found treatment that works in managing it or takes it away for long time at least.good luck in ur search for right treatment and good rheum.

  • Sorry I meant good derm.all the best

  • Hi seahorse02 how r u doing,I hope much better.just to reiterate what I said before about getting Ppps after stoping humira,I saw derm. first time today and after she saw photos of my feet and hands (how they were,because now they r much better just a bit of redness,itching sometimes and dry skin),she said it is psoriasis and humira does trigger it in some cases.but she was glad it was over,it may flare up again in future or not(hope not),but since I found what works for me to continue with that and she discharged me.also she thought like me that food doesn't trigger it(I was tested for dairy and gluten intolerance because of my stomach problems long before I got Ppps and didn't have reaction to them).i hope u found treatment that is working for u too.i wish u all the best and everyone else on this forum

  • Hi Tgdn, so good to hear yours went into remission - gives me hope! Cosentyx isn't working yet, Rheumy has doubled dosage to 300mg, am still taking Soriatane, all the creams plus added tar soak. Dermatologist is weaning me off prednisone because I have been on it SOO long - Rheumy not happy with that due to that is the Only thing keeping swelling in ankle and foot down (at least somewhat) but my skin is in such a mess he is not complaining very loudly. The OA is mangling my left foot though. The PPP just keeps flaring over & over - wearing gloves when out in public now. Latest flare last week came with strep, 2nd case of that in 4 months - pustules arose in inside of bottom lip & even had one on tongue. My poor dog thinks we are never walking again ! ☹️

  • Hi seahorse02 so sorry to hear u r having such a rough time and makes me feel guilty now for sharing my news.but do u know that after six mths. waiting to c derm. it was only ten min. session without asking at all about family or my personal health issues history,didn't even look at my feet,scalp or nails,dx. based on photos and discharged without even one follow up appoitment.a bit strange but what can we do,but my point is I m very discouraged to even ask to c derm. in future if God forbid flares up again.but I m glad I decided to stop steroids it made all the difference for good in my future if I need steroids I m going to use them once a day for one week only and then continue with this Bria balm it made tremendous improvement for continue to wean off steroids and because u used them long time it will take long time to c any improvement but it will improve trust me I tried it and it worked just be very patient,and think about me, I went through it and came on the other side much better so u will too,just persevere. I used to wear gloves all the time but not anymore,or couldn't walk from split and sore feet,couldn't sleep from itching.but all in the past for now hopefully it stays like more thing for my ears and scalp I used pure coconut oil and in my case it was very effective if u didn't try already worth a try for face.and the other thing I noticed excersize is helping me a lot with pain and swelling of joints(I have ancolysing spondylitis and the support group gave me list of excersizes I can do),and really helps long beginning I found it hard work to ezcersise but now that I've got into a routine is easier and I feel much better,I have good and bad day's,but it does help with reducing swelling and pain.sorry for long reply I wish I could help u somehow to overcome ur hard times,I wish with all my heart u start feeling better and get long term good results with ur treatment too.if nothing else I can always read and reply to ur wishes to u and everyone else

  • Tgdn , don't you dare feel guilty for sharing your good news - I am Happy to read your and anyone else's good news on these boards!! There has been a fast change in my case. On advice of dermatologist & her partner I went to see a dermatologist Specialist who specializes in stubborn & rare psoriasis (a research scientist who does a lot of work in clinical trials & patients who have been told there is nothing more that can be done for them). She asked at what dosage prednisone was keeping ankle swelling down & maintaining SLOWer growth of rash - 15mg - she told me to stay at 15mg. Took me off all other steroid creams added Halbitasol ointment, added Clorox bleach 1tb. to bowl of water soaks for feet, hands to cut any bacteria growth, stopped anti fungal powder, changed cholesterol med, stopped Cosyntex & was really angry Rheumy did not start me out at 300mg vs 150, and applied for pre-auth for Cyclosporine (the biggie). Said diet must be totally low fat because should my cholesterol go up I have to stop Cyclosporine immediately. I had to sign about 7 or 8 possible side effect waivers (irrepreparable kidney damage/failure, vascular damage, lymphoma, etc.). Scary stuff. She has a wonderful bedside manner tho - she is a patient too - she has to to have transfusions for her own autoimmune disease tho I do not know what disease. She has written a book about being a physician as well as a patient at the same time - title escapes me right now. Anyway, I have to go in once a week - after insurance allows me the Cyclosporine - for blood tests as dr. increases the mgs. I have high hopes, along with fear. But prayers for that will do fine. I apologize too for lengthy post but sleep is elusive & it helps to put this down on paper (electronic paper:) ) & thanks for reading. And once more, I am truly glad for you & thank you for sharing your good happy news!!

  • Seahorse02

    So glad to hear things r moving forward with ur treatment and hopefully very soon u will have good news to share we all know since every case is different so the treatments should differ from one case to the other,but one thing I noticed (in my case at least) is that positive thinking does a lot of good too,I think we all need a bit of placebo effect in overcoming the hard continue with hope,and belief in ur derm. and treatment,because I think that this belief in my treatment worked miracle in my case.but for how long,that is a million $ question?i wish u all the very best result and outcome in longest possible term.😀

  • Tgdn - Thank you for the well wishes - same to you!! I agree - a positive attitude helps everything, tho hard to maintain sometimes. I went for the 2nd lab work yesterday & blood tests are all good. Maintaining the low fat diet, no simple carbs, no red meat. The only letdown I found this morning. Did not have any psoriasis on backs of thighs before - found several patches I didn't know had appeared. Well at least I got through one week without hands & feet flaring - knock wood!! We'll just trek along & see how it goes.........

  • Hi seahorse glad to hear some good news from u,I hope it goes away soon for u like it went for me.actually that's all we can do trek along and hope for the best.i take one day at a time,remission or whatever it is,and hope it doesn't flare up for very long time,or even never again(wishful thinking).lets hope the treatment works for long period of time and u get some quality back into ur life.kindest regards x

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