Comments
Steve Denny wonders if anyone has tried CBC oil?
Cathy Hoover — You sound so much like me when I started on this terrible journey seven years ago. The itching was excruciating. Sometimes Noxcema or ice packs would help with itching. I was so exhausted that it took me an hour every morning to get the energy to get out of bed.
Teri Rosalez — You really brought back the memories. It absolutely will get better. Although not completely eliminating it, I found a product called SARNA that helped somewhat with itching. Wet wraps help also. I remember the pain trying to shower.
Lorna Roberts — Have you tried mixing some Vicks in your body cream. Have your tried Benadryl topical cream?
Sandi Hartman
Hang in, it will get better. Very awful disease. Effects every part of you, inside & out. Please know that you are not alone. Drink lots of liquids. Sleep all that you can, and dress in inexpensive comfy cotton clothes. Slather several times a day with Eucerin, Aquaphor, or a coconut oil based cream. Wear nitrile gloves over the lotion on hands. Do the same w your feet w soft socks. Shower every 2-3 days quickly & reapply. Invest in a good vacuum cleaner and a hand-held one if possible for all the skin you shed. Take care of yourself. Sending hugs.
Sherry Redman Shafer
The itching will drive you crazy. I remember this stage. I took Benadryl to help calm it.
Have been on Acitretin for a year. It has kept me clear but I still don’t have much energy.
Marion Mulligan
You are at worst stage but will get better in time. I feel your pain. Moisturise all the time with Vaseline type cream and drink lots of water.Keep going to your Dermotologist .Keep safe.
Azucena Rblcv
My doctor prescribed antihistamines along with the use of CeraVe cream. It helped a lot. But I feel you. During my worst stage my hands were awful. I couldn’t bear to have them uncovered without something tight on my skin. The itching and burning would drive me crazy. Cryotherapy and oatmeal products helped me as well.
Carol Terry
I understand completely as I was there – grabbing chunks of skin until it bled in an attempt to stop the itching. I remember when I saw hair on the floor of the shower and it wasn’t from my head!! The amount of flaking skin that was produced and collected in every crease, fold and orifice on my body (and I mean everywhere!!!) amazed and horrified me in equal measure. My inch-long fingernails came in very handy at times – I kept them for as long as I could in order to get to those hard to reach places – until they dropped off. The swelling……now that did frighten me. The lower half of my body was SO swollen I was afraid my skin would burst like a pricked sausage. My Dermatologist prescribed and advised – Antihistamines for the itching. Diuretics for the swelling and also to elevate my legs above waist height. Drink 2 litres of bottled water daily. Moisturise repeatedly to keep my skin moist (yuk!). Get plenty of quality rest and sleep. Surprisingly, my body returned to “normal” eventually. Until it did, I could only wear a loose cotton hospital gown. 8 months later, the day came when I could actually wear knickers again for the first time. Today – 19 months since onset – only my hands, feet and scalp remain problematic. My hands…….wonky and worsening arthritic fingers. My feet…….swollen and worsening arthritic toes and a “pins and needles numb feeling” under the balls of my feet. My scalp……..scaly patches on the crown requiring regular treatments to clear. The Acitretin and all other meds were stopped in March and now I only take CBD oil – which I have taken since my hip replacement surgery in Jan 2018 for the pain and to wean myself off of the Tramadol, Morphine and Paracetamol. Before PRP I was in constant pain with an ongoing degenerative back condition and was taking Tramadol daily for that and my hip but the CBD oil is managing to control any pain I may now have.
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Peter Moran
See if you can get lyrica (pregablin) or neurontin (gabapentin). Both act on your nerves and tge itching with PRP is essentially nerve irritation not a histamine reaction. You need a prescription but they can really help.
I found that removing as much of the old flaky skin as possible made it more bearable. And my feet in ice water, but then I was always too hot with PRP not cold.
Kim Rowley
Gabapentin was my savior.
Linda Nessa Bradbury
Hi Lynn, so sorry to read you are suffering with PRP. This is the acute stage of the disease and also the most difficult, which the people here can relate to. My legs were also very inflamed and painful during this stage, and after showering I applied heavy duty emollients before putting on Skinnies therapeutic leggings for comfort and to help my skin to retain moisture. Skinnies are available in both the UK and USA, and their gentle, viscose clothing products are so soft to wear next to inflamed skin. Hope this helps.
http://www.skinniesuk.com/product/57/Leggings
Kym Shepherd
Hello I am so sorry. I have a pair of size small Skinnies that I could mail to you. I only wore them briefly. I was as miserable as you. I wrapped my body in cold packs. It was the only thing that helped. I too was freezing but the cold packs helped my hot, itching skin. I would then cover with lots of blankets. You can get a case of Aquaphor once a month for FREE. The information is included in the PRP Survival Guide. I purchased a gel cold pack dog bed that I would freeze and then lay on or fold and put wherever I needed it the most at that moment. I can mail mine to you. I too lost my hair, my eyelashes and eyebrows. They have all returned. Keep your eyes moisturized with preservative free eye drops. I wish I could be more helpful to you. Kym
Judi M. Taylor
Lynn, I identify with you 10000%. 2 yrs in and I don’t know how much more I can take. Its on my feet n hands. Sometimes I don’t know which is worse, the itching or the pain..I have fissures so bad on my feet I cannot walk. I use a power chair to get to my bathroom. This week has been so horrific I never bothered to get dressed. Nothing has helped with the itching. Tried so many things I have lost count. The costs are financially draining me. The meds are expensive.. Everyday O pray they will find something to get me in remission n I will pray the same for you. Hang in there..God Bless you.
Elizabeth Tom Breedlove
It is an horrible disease. A year ago I felt exactly like you did. You are not alone and this group is so awesome to get support when you feel you are at your lowest. I at such a different place than I was a year ago based on all the advice I gained from these people and my wonderful doctors in my corner.