From the Editor…
The challenges we face while being treated for PRP
As PRP patients and caregivers, we play an important role in the treatment of PRP. Collectively, the PRP community has a wealth of information from the patient perspective. No one asks what we know.
During the period February-May 2015, 28 members of the PRP Facebook Support Group helped identify some of the basic challenges we face — as patients or caregivers — while being treated for PRP. The following is just a sampling.
1. Finding what works for you
Nicola G (Central Otago, NZ)
I had been using steroid creams and ointments since I was a baby. Then they stopped working. I was med free (not by choice) for around 10 months with undiagnosed PRP. When I was finally diagnosed, my dermatologist felt my liver tests were good enough to try acitretin. While it did work very briefly, it eventually made me worse. Next, I tried methotrexate. After a year of taking it and a couple of dose increases, finally something that works for me. Now the doses are being decreased.
Diane A (Montreal, Canada)
Medical profession that is ill-informed about our disease in general, drugs that work and don’t. Seems to be a bit of trial and error
Bob H (Sierra Vista, AZ)
Finding the correct drug that works and having topical ointments that promote skin healing and comfort.
Heidi P (Tamworth, NH)
Opting out of ingesting steroids. My focus was to find a medication (ointment) which would aid in the relief of my rash. When I did visit a dermatologist, I had her read our PRP information. From that, she culled using PROTOPIC ointment. It was a life saver for me.
Kathleen T (Dunedin, FL)
The biggest challenge with treatments is that they have been ineffective for me. Also, that there is a trade off for possible serious side effects and lifelong implications from treatment. I’m never sure if certain things are because of PRP or not. For example, I get overheated, tend to run low grade fevers and get fatigued… And I don’t know anything to do for it.
2. Cost of medication & Insurance Claims
Diane A (Montreal, Canada)
Insurance challenges of prescribed drugs that don’t align with Health Canada’s “listed approved diseases” per drug
Tierney R (Virginia Beach, VA)
My insurance considered Remicade (at $13,000-$15,000 a dose) to be experimental and cosmetic for use in PRP. While we were in the appeal process I developed Crohns disease which is covered. On the other hand, I also take methotrexate and I can get a vial of it which lasts slightly over a month for less than $10 and I don’t use insurance to get it.
Lorna R (Eugene, OR)
Health insurance is a real problem now for people taking the upper tiers of drugs. What insurance plans paid last year, they are not paying this year. The co-pays have gone up considerably, for some prohibitively. You can work with your doctor and pharmacist to claim a hardship. You have to have a doctors order,. Some pharmaceuticals have programs to help provide medications for those with a hardship.
3. Finding a PRP-Savvy dermatologist
Bill M (Plano, TX)
I was lucky. My diagnosing dermatologist had been the chief resident of dermatology at the University of Texas Southwestern in Dallas. He referred me to UTSW for ongoing treatment.
Karen Bu (Mold, North Wales)
First and foremost, find a PRP-savvy dermatologist.
Tierney R (Virginia Beach, VA)
A teaching hospital is usually the best place to find a dermatologist who knows anything about PRP. I see the head of dermatology at Eastern Virginia Medical School and I am very pleased with the care I get from her and her staff.
4. Self-managing treatments
Kev H (Blackpool, England)
For me the biggest challenge has been managing the treatment. So many emollients, pills and creams, many of them needing to be ordered by the chemist. I work away from home three days a week so it has been a struggle to fit in GP, dermatologist and hospital appointments as well as making sure I have enough treatment to last for my time away.
5. Dealing with side effects
Aziz T (Laurens, SC)
I was on Humira and 25 mg/day of acitretin. I was healing slowly, life was getting better. I was managing sides effects (Allopurinol to control gout, indomethacin to reduce swelling) but my dermatologist kept insisting on doubling my acitretin. I finally agreed to taking an additional 17.5 mg on Fridays and Mondays. The very first dose flared me up in 24 hours and I had to stop acitretin totally. After a couple of months the rash started to get even worse. It seemed that I was going back to the acute phase. My PRP-savvy dermatologist has reintroduced acitretin at 17.5 mg/day and I am once again healing rapidly.
Claire G (Mariposa County, AZ)
My treatment involved acitretin and Enbrel. I found it hard not to drink alcohol whilst taking acitretin. I’m by no means an alcoholic, but I do enjoying socializing and having a couple of drinks at the weekend.
6. Dealing with no formal treatment plan
Tierney R (Virginia Beach, VA)
The biggest challenge I face regarding treatment of my PRP is that the doctors seem to go by trial and error
Aziz T (Laurens, SC)
The biggest challenge was the lack of a defined treatment plan. Due to my earlier misdiagnosis of psoriasis I was on Humira, and my dermatologist was ready to stop my Humira shots; I brought copies of technical literature to show that this was actually an effective treatment in several cases. So, if the patient does the literature search and tells the doctor what treatment plans have demonstrated success, does that give you any confidence?
7. Getting the dermatologist to listen to me
Colleen S (NSW, Australia)
I found it very hard to have confidence in the Specialist. He wouldn’t listen to me, but thought I should take and do as he said. — often without explaining why
8. Finding someone to treat psychological issues
Alan T (Broxburn, Scotland)
The biggest challenges for me were all psychological. I’d work hard to avoid letting depression take hold. Accepting that, for now, I wasn’t calling many of my life’s shots. That was tough having been a rebellious, anti-authoritarian character all my life, realising that for once I may need to just do as I’m told because I didn’t know how to fix this by myself was a serious challenge.
9. Weaning off of drugs
Karen Bu (Mold, North Wales)
My biggest challenge now is, when do I stop taking methotrexate? My PRP is definitely getting better, but I still have spots, blotches and peeling. My derm recommends patience, and I do not want it to come back, but I would love to be drug free.
10. Treating a child with Juvenile Onset PRP
Jo C (Manchester, England)
As a mum of a 9 year-old with PRP who also has ADHD, my struggle is trying to explain the condition to him. His concentration span is short and all he keeps saying is why me mum, why me again! It’s heartbreaking. Heartbreaking to have to stop his already busy routine to apply thick greasy ointment to his whole body then put a full body stocking on to keep it in place. The pulling and fidgeting and discomfort are soul destroying, especially when he asks how much longer till it goes away mum? On warmer days (granted not often in Manchester, UK) most kids go to school or out to play in shorts and t-shirt. My son goes out in a full body stocking too. He despises PRP and cannot understand why he had to get it coz he already has ADHD and he says its just not fair that he has to deal with two big problems! He’s 9! I feel for him so much.
Christine G (Zürich, Switzerland)
As a mum of a little girl with PRP, I was willing to consider any medication for my daughter, even medications I had never heard of. Even giving my child an immunosuppressive medication at the age a child to build up her immune system. When Molly was sick with a virus or bacteria, I had to explain the medication and the treatment of PRP to a GP who was unfamiliar with both the medication and PRP. As the mum you sometimes know more about acitretin and methotrexate than the doctor. But to give your child the PRP medication, together with pain killer and antibiotics, when your child has a strep throat? I am thinking to myself, “What the hell am I doing to my child?”You have to be very disciplined because you are responsible for moisturizing your child You constantly remind yourself:
✴ wash their hands to avoid sickness
✴ don’t forget the skin cream at home when you leave for a afternoon outing
✴ make sure your child has enough water to drink because she can’t sweat
✴ be watchful to ensure that she doesn’t overheat
All this is your job as a PRP parent — whether or not you are sick or tired. I can imagine the challenges faces by Ginny M with her three children in South Carolina and herself, a PRPer with juvenile onset.
Małgorzata K (Oborniki, Poland)—
For me the biggest challenge is to do everything to reduce pain and itchy skin. It is heartbreaking to see that your child, his little hands and palms in such pain, struggling with building blocks … Why, my son? I`m afraid of his future. I have no idea how will he live as an adult. Will it be possible for him to live as a normal teenager? What will he do for living? Is it possible to be healthy? I can`t stop thinking about it.