https://www.facebook.com/groups/15865278115/permalink/10158628990338116/
Steven B, Northern California
First off I want to say thank you for the group acceptance. I have had PRP for the past year and a half and JUST was diagnosed a couple months ago. (Dermatologist thought I had psoriasis for over a year until I got a second opinion from Stanford University when I tried three different biologics with no improvement.)
I am covered from head to toe and had DEEP cuts in my hands and feet. After being on acitretin and cyclosporene for the past couple months, my hands and feet have healed. But I feel the rest of my body isn’t really improving too much in terms of redness and flakes. I was curious about others and how severe their PRP is and how long it took to clear? I just want my life back.
Martin W, Wolverhampton, England
Welcome to the group. It took me three years to recover. It sounds like you’re gradually improving but it is very frustrating I know x
Anne B, Glenside, Pennsylvania
Welcome…little over 3 years now…..big improvement though! Likewise I was on both Acitretin and Cyclosporine and they were a big help! Now I take 10mg of Acitretin
Brenda Pauline
Hi Steven. I had a similar tale. I went from a single spot on my back to fully red head to toe within three months. Feet and calves were swollen. I had to wear winter coats indoors and still shivered constantly. Derm thought psoriasis for 9 months (but in retrospect he looked shocked every time he saw me so I think he was doubting his diagnosis) and prescribed cyclosporine. After 5 months on it I had seen marginal improvement but legs less swollen – feet less cracked and shivering had stopped. That dermatologist left T\town and I got a new Derm who instantly thought PRP due to the islands of sparing. I stopped cyclosporine between the two different docs because I didn’t think it was doing much and I feared it’s effect on my kidneys. The new Derm offered acitretin but by that time I was interested in getting away from drugs. I focussed on anti-inflammatory diet, good sleep hygiene, yoga, meditation, creams and way less stress and have seen steady improvement ever since. I’m now two years and one month since my first spot appeared and my scalp still has a few crusty spots and my thighs have a scattered number of dried red patches but otherwise I feel great and look back to my old self. For me I honestly think that I had suffered a tough stress year that brought on prp. Self care brought me back.
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Brenda Pauline
One other thing…. I avoided and still avoid carbonated drinks of any kind. I basically try to treat my digestive tract gently. I have read a lot about the gut microbiome and the possible connection to various autoimmune diseases. I’m not absolutely certain there is a connection but I did have massive amounts of IV antibiotics about 6 months before the prp appeared. I may have unbalanced my microbiome…maybe? I certainly don’t claim to have the answers …. all we can do is try!! Best of luck Steven!!
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Cheryl Ramsey
steven bateman….I went thru 3 dermotologist…none had a clue,I finally got a diagnosis after a year of misery.I was a secretary in rhe ER. Every doc in that hospital was trying to figure it out. Finally went in remission about 6 months later
Carol Terry
You will get there…..just take the advice of your Dermatologist. Your story sounds similar to mine and it was a living hell. My remission started in March this year and, from 100% coverage, I am now 95% clear. My scalp and feet remain difficult to clear but I am getting there – the in-between bits are okay!!! My finger and toe nails are now normal, too. Patience is a virtue I had to learn to cultivate……I certainly wasn’t prepared for the length of time I would look and feel like I should carry a bell to warn others to give space to the unclean person!!! A sense of humour helps, too!
Carol Terry
Steven Bateman
Sadly, cos I couldn’t walk or bear clothes on my skin, I was unable to go out for 7 months. The day I could put me knickers on was a breakthrough!!!
Tim Bourbonnais
Mine lasted 18 months. I was over-prescibed Cyclosprorine and was hospitalized with Cyclosproine poisoning. Hopefully yours will clear up in the coming months.
Larry Stahley
Been about 8 months…seen big improvement with combo of otezla and 3 doses of. Skyrizi…last monthand a half about 80 percent better. ..things got real bad had gabberpentin..and an antidepressant…alprazolam..only thing made it bearable..4 months of no sleep eyes all messed up burning. itching ..flaking. peeling too much without meds. And every cream known to man. Only thing I need now is to start sweating ..good luck ..to you
Steven Bateman
Author
Larry I had very similar experience before they finally put me on Asetretin and Cyclosporene. Every other night I wouldnt sleep a wink, the itching was just unbearable with the flakes making it worse. I was on skyrizi, then taltz, and then humaria before I got a second opinion through stanford and they immediately knew I had PRP and not Psoriasis which my derm locally had done TWO biopsies which both came back as psoriasis
I was also misdiagnosed but my doctors thought it was eczema. I was on cortisone and steroids for over a year and made my skin flare even worse. I went to Mexico in Jan of this year and within 5 months I’m completely clear from my skin. With PRP every case is different and can bring along many other different symptoms such as the swelling of the feet, extreme exhaustion, thinning of the hair, hyperkeratosis of the nails. Those are things I’m still struggling with but my skin was so bad I am just happy to be clear of that. I was on Isotretinoin and antihistamines. Went back to Mexico for a refill but only to control the other current symptoms and reduced the dosage. With my redness and flakes I used CeraVe cream and cryotherapy. That helped me a lot during that stage.
Pam Adams
Hello and welcome. I am 2 years in November. Hopefully you have been through the worst of it
On your own without this group would be much harder to cope so well done
I know it’s frustrating not to see improvements
I am hoping for the 3 year plan like Martin
Ben Issuree
The 3 years plan is a good guide, PRP has it own phases, one has to go through these phases, and your own body will start to cure itself, take whatever works for you to make you feel better, be patient and let the phases of PRP through its natural course. PRP will not kill you, you have to be strong, you will get better, I have walked the PRP, there is no cure for PRP, the body will repair itself. Take care and be safe.
Bill McCue
My PRP journey began with the appearance of a red spot (size of my dime) on my forehead on August 8, 2012 and ended in March 2014 but made official by my dermatologist on April 8, 2014. Took 3 months to diagnose. Had ALL the typical problems with the exception of impaired vision. Acitretin worked for me. Also Desonide (face), Ckobetasol & urea lotion (palm and soles), and triamcinolone (remaining nooks and crannies (500g tub lasted a month). Treated at UT Southwestern. Twenty months is on the SHORT end of the time line. I was mentally prepared for 3-5.
Good luck on the journey that remains. You are obviously no alone. Welcome to the Land of Chat!