PRP Survival Guide

PRP Survival Guide

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Issues related to flares

The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we are best positioned to harvest that knowledge.

Share what you have learned about flares and setbacks. Share articles you feel might be worth reading or websites worth visiting. Here is the first question we ask.

According to MedicineNet.com, a FLARE is “an exacerbation of a chronic disease. Sometimes referred to as a flare-up, a flare occurs when symptoms of a disease that has been present for a time suddenly worsen. A flare is a transient worsening in severity of a disease or condition that eventually subsides or lessens. For example, in many arthritis conditions the joints can flare with worsening of stiffness, pain, and swelling.”

For our purposes, a flare is NOT the initial onset of PRP.

How have you handled flares and setbacks? 

 

Barbara F (St. John’s Newfoundland, Canada)

I am having a flare. Does this mean I am starting all over again with PRP and the progress I have made since May 2018 has been lost?

McCue B (Plano,TX)

In my case I have never had a flare. Onset 08/2012, Diagnosed 11/28/2012, Remission 04/2014. In response to question #3, I am mindful of the possibility of a FUTURE FLARE and try to keep stress in my life at a minimum. It did not stop me from taking my annual flu shot.
 

Tierney R (Virginia Beach, VA)

I have had flares too numerous to count. And the duration of the flares varies from episode to episode. My latest flare was caused by a case of tonsillitis and three antibiotics to cure it. I’ve gotten used to having “bad” skin. Going from remission to a flare isn’t as traumatic as it would seem. I have sort of resigned myself to not being clear after all these years.

Ginny M (Lexington, SC)

I want to find the time to try and define the level or stage of a flare. Especially for Juvenile Onset PRP . Things work differently for us at the different stages.

Aziz T (Laurens, SC)

Bill, how do you count a flare caused by an increase in my acitretin dosage? I am really interested in how often, and how severe the flares are after you go into remission. 

Sandy K (Dearborn, MI)

I’m still on a very low dose of acitretin, so by definition I’m not technically in remission. However, I feel close to 100% clear. That being said, there’s barely a day goes by that I don’t worry about a flare. I also try to keep the worry to a minimum.

Lindsay S (Charlotte, NC)

I’ve currently been in remission (not experiencing a flare up, but do get spotting thanks to stress and cold weather, however autoimmune issues remain) since 2005. My last flare I don’t know the reason for, but I went from a two year long remission to a flare almost overnight when I was 15. It occurred during the winter. It was treated with Accutane and Vanos topical steroid. I was back in remission at 16. I’m extremely concerned about potential flare ups, as I haven’t had many hormonal changes since then (such as pregnancy), something Tierney and I have talked about being a possible trigger. Only time will tell.

Kathleen T (Dunedin, FL)

Juvenile onset. Too many flares to count, and my PRP IS flares. They vary in severity, duration, and triggering factors. Sometimes no trigger. They are worsening as I age and getting closer together, more severe, and covering more area of my body. Even when I’m not “flaring” I still have affected areas, they never go away completely, they just aren’t as bad. I’m lucky because I’m not covered completely, just arms and hips and a few other small areas.
 

Ginny M (Lexington, SC)

I believe one of the best things ever for juvenile prp patients is a good therapist! My kids love going….unfortunately we end up sharing the extended family drama and never really discuss our illness, anymore.
 

Brenda M (Kent, England)

I have experienced a FLARE – the only one I’ve had – began in July 2015 due to an injury but I was also on long term antibiotics at the time. Not as severe as initial outbreak, it has receded now to just being on my lower legs. The area that received the injury is taking much longer to recover and is not acting in the same way as the rest. Overall mental wellness – confidence knocked and increased concern over longer term i.e. will this turn into something more sinister etc…
 
Diego T (Barcelona, Spain)
 
It’s funny because It’s true. I’m from Spain, living in Barcelona, I’m 41, I have had  PRP since 8, 20 years with acitretin, 25mg/day. I was almost clean once, but my palms, soles and nails never were completely clean. I have PRP type V, flares always came after a stress period, I remember, but in summer, if I can spend time in having sun in the beach, my skin looks great, I look great.
 

Bill M (Plano, TX)

Considering the fact that everyone has their own version of PRP (duration, intensity, what works and what doesn’t, you will always be in the learning mode with your son. But there are over 100 parents in the PRP Facebook Support Group. You are definitely not in this alone.
 

Claire G (Phoenix, Arizona)

I have been in remission for nearly a year, after having PRP for just over a year. I have yet to experience any kind of flare and sincerely hope it stays that way! However, I’m fearful of it returning, particularly as I was never really able to pinpoint what caused it.

Deborah B (Deep Gap, NC)

I have had PRP for 1year and eight months. It is still over my whole body . I had flare ups every three weeks, like clockwork,and they lasted from 3-5 days. When I hit around 1.5 years with the disease, the flare ups lasted less time- 1-3 days. Stress, not resting when I feel tired (pushing myself, usually in social settings), and showers are what triggers flare ups now. The impact a flare up has in my mental wellness is a shut down.

John J 

There is definitely a cycle. I turn real red. Very hot feeling. My body pulsates. A burning sensation. Then im ready to come out of my cocoon. Skin is sensative. Itching like mad. I will lightin like switched off. Then in few days a few showers it starts over. II will lose skin from head to toes.

Laura B (St. Cloud, MN) 

I experienced 1 extreme flare in June of 2014, which took me out of my nearly 2 year remission… It spread quickly all over my entire body, and burned/itched beyond anything I had ever experienced… No matter what I did, I could not keep my feet and hands from cracking open in several places each day… It felt like each hour brought a new obstacle to overcome, and it weighed heavily on me. I felt like I was failing my kids and my husband by being so immobile throughout the day… I would push my body to the point of tears, to try to keep going.

That flare-up lasted with intensity for about 6 weeks… Then slowly came back to “normal” PRP symptoms, which I am still dealing with, nearly 2 years later. My new normal. It is MUCH better than it was, and I’m grateful.

The flare-up occurred about 24 hours after getting a barrage of mosquito bites while being outside on a summer evening in Minnesota…I am adult-onset, Type II.

Christine G (Zurich, Switzerland)

Molly had her PRP outbreak after two treatments with antibiotics short after each other. Since now she has had 5 flairs: two after treatments with antibiotics (the first: full bloom over night!, the second less bad and only short in time), 2 flairs after lack of sunlight (winter season) and 1 after the reduction of the medication.

Should the PRP global community research the topic of FLARES?

  1.   Have you ever experienced a flare or flare-up?
  2.   How many SEPARATE flares have you experienced?
  3. How long do the flares last?
  4. Was the occurrence of a flare preceded by a trigger, e.g., stress, injection, illness?
  5. What was the impact of a flare on your overall mental wellness?
  6. For those in remission, how concerned are you about a flare in the future?