PRP Survival Guide

From the Editor

When we think about the treatment of pityriasis rubra pilaris, we think retinoids, immunosuppressants, biologicals or no meds at all. Every so often a new members asks about the efficacy of prednisone and the Land of Chat comes alive.

Initially posted in December, 2018, it occasionally “pops up” when someone stumbles upon it.

Of the 45 respondents, 42 (93.3%) registered a negative comment. While a cohort of 100 would have been more desirable, the response from the patient perspective was clear.

From the patient perspective,
prednisone is contraindicated for PRP

PRP patients and caregivers are familiar with the PRP treatment mantra: What works for one doesn’t work for all. However, the question is not whether prednisone is a viable treatment option for PRP. A better question may be: Should prednisone ever be prescribed to patients diagnosed with PRP?

The insights and experiences of PRP patients and their caregivers must be harvested and shared. The PRP community must develop effective channels of communication to the following:

  • All dermatologists currently treating patients diagnosed with PRP
  • Dermatology departments in teaching hospitals
  • Society of Dermatology Physician Assistants
  • Dermatology Nurse’s Association
  • American Academy of Dermatology

As of August 15, 2021 there are 2,623 members of the PRP Facebook Community representing 2,272 PRP patients. If you are a “PRP Facebooker”, you may CLICK HERE to access the original post. However, for the 341 PRP patients who are not not members, the following is a recap of the feedback. Feel free to Leave a Reply below to add your insights and observations regarding prednisone.


INITIAL POST

 

Eva B (Georgia, USA) My dermatologist wants to start me on 5mg of prednisone. Anyone have advise on if this is advisable for PRP? Don’t want to take it if it won’t help. I’m in early stages of another round of rash after being in remission for a couple of years. My original dermatologist retired.


41 NEGATIVE  COMMENTS (93.2%)

(1)  Bill M (Texas, USA) 👎 I was misdiagnosed with seborrheic dermatitis in early September 2012, and prescribed ever-increasing amounts of prednisone for two months. At 3:00 AM on November 8, my first 60mg dose of prednisone “kicked in” and  I was visited by a 20-foot rubber duck and hospitalized for six days. Twenty days later I was properly diagnosed with PRP. A misdiagnosis can, too often, result in mistreatment and incarceration…I mean, hospitalization.

(2)  Jan T (New Jersey, USA)👎 I went to the doctor so early. My rash was limited to a few spots on my chest and neck. I was prescribed prednisone when they didn’t know what I had. Hence the trial of prednisone. Apparently prednisone works like magic on many rashes. In my case it was  stopped when they determined I had PRP. Prednisone is not good if you have osteoporosis and can cause or worsen cataracts. Not worth it in my case, as I have both — especially since it didn’t help the PRP rash one bit. Prednisone didn’t do a thing — either bad or good. I didn’t develop erythroderma until I’d been off the prednisone for a full two months, so I don’t think they were related in my case.

(3)  Lorna R (Oregon, USA) 👎 If indeed you have PRP, conventional wisdom seems to be, steroids are not beneficial. Steroids are not effective in the treatment of PRP. It will be effective perhaps if you have some other inflammatory disorder. It is crucial you have the correct diagnosis to begin with. I trust all other causes have been eliminated?

(4)  Diane S (Arizona, USA) 👎  Before I was diagnosed with PRP, they thought I had eczema or psoriasis and prescribed the prednisone. When I went to the doctor who diagnosed me, he said the prednisone was the wrong drug. Ditto to what people are saying above. My derm told me that it would get worse before it got better once I went off the prednisone. And it sure did. But at least then the diagnosis was definitive.

(5)  Glen M (Illinois, USA)  👎 Prednisone is counter indicated for psoriasis a very close relation of PRP as it can truly exacerbate it ie erythroderma. Amazing consistency yet so many get this as treatment. The big question we need to ask the dermatology community is why is this being used since it is counter indicated according to treatment guidelines and derm experts?

(6)  Gayle F (California, USA) 👎  Before doctors knew what it was, I was on very high dose of prednisone for the itch. It did not work at all and made me in a huge fog. weaned myself off.

(7)  Holly K (Pennsylvania, USA) 👎 Didn’t do much for me

(8)  Ellie W (England, UK) 👎 May be a coincidence but husband ended up in hospital with full body erythroderma not long after starting prednisone.

( 9)  Lidia G 👎 Didn’t do much for my husband, dermatologist said it may have made it worse for my husband

(10)  Nathalie C (Ontario, Canada) 👎 Ended up a full body rash when the prednisone wore off about a week after tampering off it. Not worth it.

(11)  Diedre H (Louisiana, USA) 👎 I was told that it does not help at all!

(12)  Jessica H (Georgia, USA) 👎 Prednisone did nothing for me but aggravate

(13)  Louise L (Pennsylvania, USA) 👎 We were told it is not recommended for PRP.

(14)  Karen P 👎 They put my brother on before proper diagnosis but did help

(15)  Doreen A (Florida, USA) 👎 Hubby was put on it before we had a diagnosis of PRP. Did not help him.

(16)  Vivienne P (England, UK) 👎 
Seriously question taking prednisone. It didn’t help me and many others with PRP.

(17)  Janell P (Oklahoma, USA) 👎  I was also on massive doses of prednisone before properly diagnosed. It did nothing for PRP, ended up in hospital.

(18)  Diane H (Minnesota, USA) 👎 Don’t take it.

(19)  Erica B  (New Jersey, USA) 👎 Prednisone made me worse. It was a small dose only for a short time.

(20)  Gail S (Michigan, USA) 👎 My doctor said prednisone is not for PRP. Could help if you have something additional going on.

(21)  Sandra C (Virginia, USA) 👎 Prednisone did nothing for me either

(22)  Cheri H (Nebraska, USA) 👎 Remicade helped me the most. Almost to remission but not. Now on 5 mg prednisone and it helps with joint pain and flares.

(23)  Kelli G (California, USA) 👎  Prednisone did not help me at all. In fact this week my #2 dermatologist agreed with me when I said I felt the prednisone from dermatologist #1 fed my rash.

(24)  Eileen S (Pennsylvania, USA) 👎 Do not take it! Didn’t do a damn thing for me😥

(25)  Deborah B (North Carolina, USA) 👎 Did not help me.

(26)  Abbie C (Texas, USA) 👎 I don’t think Prednisone helps PRP and if has unwanted side effects.

(27)  Keith C (Alabama, USA) 👎  My husband was on 40 mg daily for about a month or more. Blew up like blow fish ate us out of house and no help for PRP.

(28)  Mary E (Virginia, USA) 👎  Did not help me
 

(29)  Carol L (Florida, USA) 👎 Prednisone was a horrible experience for me.

(30)  Susan V 👎 It didn’t help me.

(31)  Phil W (Western Australia, Australia) 👎 No help, it possibly made it worse!

(32)   John H (Florida, USA) 👎 Don’t believe it made it worse but didnt really help either.

(33)  Burt U (Texas, USA) 👎 Prednisone made it worse

(34)  Margaret H (Australia)  👎 Yes thats what happened to me . I was taken 75mg prednisone for my flare up with PRP and erythroderma ,coming off was a living nightmare.

(35)  Wilhelmina K (New Zealand) 👎  Prednisone was the first thing the dermatologist stopped when diagnosed with PRP. It won’t do anything for

(36)  Tom P (Illinois, USA) 👎  My wife took one dose but because she is also diabetic it sent her sugar to over 400. It will effect your sugar even if you are not a diabetic, not sure how high but everyone is different.

(37)  Karen A (Florida, USA) 👎  My dermatologist at that time didn’t know what I had. I was prescribed prednisone before I was diagnosed with PRP. The prednisone made mine PRP worse and almost put me in hospital. Stopped it after a bit gradually and found another Derm who did recognize PRP


(38)  Max W (Oregon, USA) 👎  Prednisone helped me so much inflammation wise but I doubt I can deal with the side effects ever again

(39)  Russ D (England, UK) 👎  Prednisone full dose, according to my dermatologist, was the thing that made me erythmadermic so quickly. He told me that anyone with Psoriasis or PRP should never be given it.

(40)  Murray Rose (British Columbia, Canada)
👎  I was prescribed prednisone before I went to see my dermatologist who took me off it immediately.

(41)  Russ D (England, UK) 👎 👎 Prednisone full dose according to my dermatologist was the thing that made me erythmadermic so quickly. He told me that anyone with psoriasis or PRP should never be given it


 
 
 

3 POSITIVE  COMMENTS (6.7%)

 
 (1)  Suzanne M (Maryland, USA)

👍  I was a lucky one – prednisone has helped me and I am now on a lower dose and only increase if I start to flare – good luck!


2)  Frankie B (New York, USA)
👍👎  Prednisone also helped me when the itch became unbearable during a flare up Have  now been tapered to 2.5 mg every other day. The drug is vile with its horrible side effects, but way better than the itching!

(3)  Max W (Oregon, USA)

👍👎  It helped me a ton. I think I’m in the minority here— but had such intense side effects I had to stop.