I have not posted for quite some time. In my head, I told myself I would wait until February to make another post. February is the beginning of 5 months with PLEVA. I figured if it had not cleared up by February it was not going to clear up ever.
I am happy to report that it has cleared up.
In my previous posts I stated that I was going to be scheduled for light therapy. Well by the time I was called with an appointment date my PLEVA had cleared up to the point that I did not think light therapy was necessary. To be clear, if I thought it had been at all necessary I would have gone. However, that was not the case and I felt like my skin belonged to me again.
Currently I'm dealing with the scarring. The worst areas are my forearms and inner thighs. The scars on my forearms have slowly started to fade and I believe with some summer sunshine they will fade completely. The scars on my inner thighs I think will take many more months to disappear. I don't mind as this area is hidden, even in a bathing suit. There has been no scarring on my face, or at least none that I notice through the minor scars left behind by my teenage acne.
After 5 months of having to deal with PLEVA I think I can say it is finally gone. I do not know if the tetracycline had any impact on the disease or if my PLEVA just ran it's course and my body finally clued in and balanced itself. My body still remembers how it felt and often, as I lie down to go to bed for the night, I will feel the 'itch' sensation of PLEVA coast over me. It doesn't usually happen all over my body, but in areas that were more heavily attacked. Last night I felt the itch on my mid section, but a couple nights before I felt it down the sides of my torso. I suppose if muscles can have memory, then so can your skin. When I feel it, it scares me for a second. Has my PLEVA returned? I can't help but touch the area and look it over with my fingertips for new bumps that have cropped up. So far I've been lucky and I haven't discovered any. I find I also give myself a quick scan in the mirror before jumping in the shower and I pause whenever I see something even remotely unexpected and examine it that much closer than I would have before.
For me there was light at the end of the tunnel. If you are suffering, I hope you will also find relief soon. Please ask questions through this blog. I am still monitoring it and I am willing to help anyone out that is going through this same disease.
Good luck. God bless.
Hi Tim..
ReplyDeleteReally nice to find your blog, as i am too diagnosed with PLEVA, been dealing with it for about 5 months now. It's not too mild like you, but it's killing me for sure. So, really know how hard it must be for you too. Just want to ask you, how is your treatment? because don't really get that in details from your blog, did you do the light treatment? what treatment that is most working for you? Thanks :))
Hi Marlisa, at about 5 months my PLEVA started to clear up. I used topical corticosteroid cream (Betamethasone Valerate Ointment USP, 0.1%) to relive the pain. This stuff is pretty much like a paste. It's colourless, and almost odourless. I applied it to any affected areas twice a day. Normally after my morning shower and right before I went to bed for the night. This cream really helped me deal with the pain, especially when the bumps were red and sore. It also helped with the skin flaking as it tended to stay wet. It wasn't really comfortable rubbing it onto my skin, but it was a lot better than dealing with the pain from the PLEVA. I used the cream for nearly 3 months.
ReplyDeleteIn addition to that I was prescribed Tetracycline (Antibiotics). I had to take it twice a day. It was a standard dosage (I don't remember how much), but your doctor/dermatologist will prescribe what ever they think is safe. Tetracycline is mainly prescribed for severe acne. The tetracycline dried out the red sores and helped just in general with everything. It occasionally gave me a headache, and nausea but again it was worth taking. I took the tetracycline for 4 months.
I did not go for light therapy so I can't comment on that. My dermatologist suggested I go, but by the time a slot opened up for me I did not feel it was necessary. So unfortunately I can't comment on that. I did try using a tanning bed once, but the bulbs used in tanning beds are harmful to your skin. I felt better after tanning, but I think it was just a placebo effect. I never went to the tanning bed a second time. Light therapy uses a different type of bulbs which are safe on your skin.
Make sure you see a dermatologist. Doctors can only do so much, you need to see a skin specialist.
Please write back and let me know if any of this was helpful to you. I want to help people through this horrible disease. I wish you all the best. Good luck!
Hi Tim,
ReplyDeleteMy name is Kelly. I've been dealing with Pleva for three months now. What an incredibly frustrating roller coaster ride it has been! I'm in antibiotics, too. And for about three weeks I did a round of oral steroids. The steroids were rough, but I think they helped calm the Pleva down.
I hate being in the antibiotics for so long though. Doesn't feel right to have drugs in my body for so long. I read you felt occasional headaches and nausea from it. I've got the same experience. But you continued on with them? Did you ever change to a different antibiotic?
I think one of the most difficult things about this disorder is that it's so rare, & those rare cases are all so different: treatment, resolution, beliefs about dietary changes or drug use...
Thanks for sharing your story.
Kelly
Hi Kelly, sorry you are having to deal with this. PLEVA just plain sucks. I stayed on Tetracycline the entire time. My wife swears it reduced the redness, but I'm not sure. PLEVA has so many stages it's hard to tell what had an impact. The steroid cream definitely did alleviate the pain though and it was almost instantaneous. The steroid cream was the thing I was worried most about. The idea of rubbing steroids all over my body was not something I was comfortable with. Goes to show you how comfortable PLEVA is I was willing to continue applying the cream.
DeleteThe most difficult things I found was the psychological factors. I like to think I have a very strong mind and that I don't let things stress me out or even bother me, but PLEVA really puts that to the test. It's so rare. People haven't heard about it and that even includes doctors. I think I was very lucky to have a GP that nearly recognised it and a Dermatologist that recognised it immediately.
Like any rare disease people are willing to go to great lengths to try and get rid of it. Snake oil cures like going gluten free, or using Head & Shoulders shampoo to get rid of it give people false hopes. People think that because they went gluten free that PLEVA went away, but the reality is that the PLEVA was on it's way out before you went gluten free. For me, I find now that I'm avoiding certain shampoo and body wash. I'm worried that I'll "trigger" the disease to return. It's ridiculous I know. If PLEVA wants to come back, it'll just come back.
Good luck with your battle. I don't pray, but for anyone with PLEVA I do. It's not the worst disease out there by a long shot, but I can relate to it, and it deserves at least a short prayer.
I don't know if you still check this but I've been suffering for over 2 years now and summer of 2015 where it hit me the hardest. there was bumps all over my skin and now it's starting a bit but I was wondering how you got rid of the scars because I did everything it's all over my arms and legs.
ReplyDeleteHi person, the scars faded with time. I can still see areas where the PLEVA was but it's not nearly as terrible as it once was. I did try using Bio-Oil to help the scarring along. I think it helped, but time was the biggest factor. I know that isn't what you want to hear, but it was the thing that helped most.
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