PLC - diagnosed 6 months ago and getting married in August!!
Posted , 7 users are following.
Hey all, I really do hope that one of you is able to help!
I was diagnosed around 6 months ago with pityriasis rosea, which then progresed and my derm said that I presented more like I had PLEVA. The lesions continued to change and they say I now have PLC. This was confirmed after a biopsy. I initially used topical steroids, which seemed to help. My loesons went brown, fell off and left me with lovely white spots! The liesons then came back but seemed to be a lot less aggressive than the first time round.. I have now had at least 3 'waves' of the unsightly rash!!
After the topical steroids they put me on 3 months of doxycycline. Again, initial improvement and then back again!
I have now started UVB phototherapy and am on my 15 (of 30) sessions. My rash was from head to the soles of my feet! Extremely wide spread. It has cleared my upper body almost completely. My legs are still covered but I have noticed an improvement. They are now raising me in the 'booth' so the rays get my legs more. It seems to have largely inhibited new liesons. Has any one had good success with phototherapy before??
I get married this August and feel so low about myself. I wondered if there was any advice anyone could give me. Perhaps lifestyle choices also that can help?
I previously had a rare form of cancer when I was 21. I'm 26 now and I'm remission. I had lots of chemo, radiotherapy and a stem cell transplant ... could this have caused this? No doctors seem to know!
All guidance is helpful, I unfortunately have lost hope that remission will be achieved! I'm usually very positive and I feel like the PLC is taking over!!
Thanks in advance! Sorry for the long post!!!
0 likes, 13 replies
Radha88347 charlotte1989
Posted
Maybe you are eating something which triggers it. My son of 6 got pleva last year. He is allergic to soy sauce . Eggs. And I'm also not giving him seafood and canned food.. try to see with what you can have allergies. But my son too is still having pleva but I try to control with steroid and cream.
charlotte1989 Radha88347
Posted
Thank you! I have actually just been to see a man named John Ogden. He runs a clinic in preventative medicine on Harley street but comes to the north (where I'm from) once a month. He did some initial tests and saw that I wasn't digesting food properly I.e my fats and proteins. He also saw toxins in blood so I was thinking about a gut detox and he said the toxins can come out in your skin! I will let you know what treatment he suggests.
I have seen a massive difference with the phototherapy though. Perhaps you could suggest this! I saw the light therapy consultant recently and she said she has seen 100's with PLEVA/PLC and has had 85% out into complete remission with it!!
This forum doesn't seem to give me any further hope though unfortunately as it seems no one can get rid completely of the pesky buggars! I just want (as I am sure we all do) to see a positive story!
When it first came, I used head and shoulders shampoo as a body wash and went on a few sunbeds and that cleared me up, but t did return!
X
louiselost charlotte1989
Posted
PLC is an autoimmune disease which I have had for the past seven years. Only 1 in 2,000 people have this condition (usually in males and the young).
I have gone through all the medications, light treatment, etc., with no success. If there ever is a cure, please let me know because it drives one crazy after a time.
The white blood cells mistakenly attack your skin, and with all the new technology, you would think some dermatologist would somehow research into redirecting these cells. I've had viruses in the past that have gone away, but this is unbelievably tenacious and I am absolutely tired of covering up my body.
charlotte1989 louiselost
Posted
Hey Louise,
Thank you for replying!
I am still going through phototherapy and I have seen a massive improvement. Did yours respond at all? I would say that nearly 80% is cleared. I had it really severe and wide spread (head to toe literally). They have just given me a further 10 treatments which will mean I will have had 40 in total by the time I'm done. I had another flare up during treatment but definitely not as severe. What was your experience with phototherapy like? My consultant has been really positive and said that she has seen 80% go into full remission but then I read stories on here and doubt that it's true!
Did you change your diet? I have little will power but have read that eating clean helps. I also went to see a dr called John Ogden who believes that there has to be a cause. He is looking in to it for me so I will keep you updated.
Xx
louiselost charlotte1989
Posted
Hi Charlotte,
I'm glad you had success with the phototherapy. I went around 52 times, and it was quite a while ago. My condition must be truly stubborn because it didn't seem to help in the long run.
I have it mostly on the legs, arms and chest. Sometimes it comes a bit on the face and hands and the only area spot-free is on the back.
I saw the dermatologist a few weeks ago, and he suggested to try the light therapy again so I might consider it. He prescribed Dapsone 100 mg, along with Acitretin 25 mg, but yesterday I looked at my neck and saw two familar welt-like spots! (always seem to come in pairs)
I DID read where eating clean (no sugar especially) might help. What is really frustrating is that an area will clear up only to resurface a few weeks later.
Yes, please keep me updated on anything John Ogden finds! I would really appreciate it. Take care.
charlotte1989 louiselost
Posted
Hey Louise,
I would also suggest taking bromelain supplements. They seemed to calm things down for me. I would defo tryblight therapy again. I certainly have had success with it, albeit with minor flare ups intermitently.
When I saw John Ogden, the first thing he noticed from my blood was that there was toxins in it. He then said I wasn't processing my fats and proteins properly. I think it's something about the toxins coming out through your skin. I promise to keep you updated! It's a really horrible disease and there is not enough research because it isn't life threatening!!
Wishing you all the best.
Charlotte
louiselost charlotte1989
Posted
Hi Charlotte, I'm going to see the GP today and ask about getting a blood test to check for high levels of strep in blood as you previously mentioned.
The pills (an increased dose) are doing nothing and it actually seems to be getting worse. I'll try the bromelain again also.
Would appreciate greatly if you keep me updated on John Ogden and what is the name for the blood test about too many toxins?
Your John Ogden seems to have better insights in PLC than my clueless dermatologist.
Thanks in advance - going crazy with this awful disease to say the least.
nikkib1013 louiselost
Posted
HI Louise,
My dermatologist sends me for blood work every 6 months due to the medication I'm on, however once a year he orders a ESR and a C4 blood test which specifically measure the levels of sedimentation in the blood.
Sandy2017 charlotte1989
Posted
I have had this condition for the last 6 months. I have tried Tetracycline, steroids, several topical creams. Nothing worked till i changed my diet.
I have stopped all sugar and gluten. I eat mostly green vegetables, rice, quinoa, legumes, beans and some chicken. My condition which was widespread from head to toe, is 80 % gone. It doesn't get better than that, its been at 20 percent for the last 2 months...keeps going back and forth between 20--25%.
If anyone has a 100% recovery, i would love to hear about it.
Hope you are doing better with your treatment.
charlotte1989 Sandy2017
Posted
Hey,
Glad to read that you have managed to get it to about 20%! Mine is probably at about 10% now and I notice that each time it flares up it is never as bad as the time before. The sun works wonders and can completely clear it for me!
Phototherapy was really the thing that cleared it all but I am still probe to occasional flare ups, mainly when I am run down.
You should try bromelain supplements - they seem to help!
Not sure there is a cure per se. It's about accepting it and finding out what works best to keep it at bay! Hopefully it just burns itself out!!
X
Sandy2017 charlotte1989
Posted
Thanks for your encouraging reply Charlotte1989. I am glad you are almost getting clear!
Sun always makes my skin irritated and inflamed with more spots so i didn't try photo therapy.
Which brand of Bromelain do you use? I did get some from the vitamin Shoppe, had them for about 1 month, then stopped since they didn't seem to be doing anything...
I know, i wish i could accept this and move on, but i keep trying to go back to normal... i do hope it burns itself out soon!
Speedy healing to all of us!
lama91151 charlotte1989
Posted
My daughter 8 years old developed Plc more than a year ago and the diagnosis was confirmed via a biopsy .. The rash was so bad all over the body. One day she had acute tonsillitis and therefore the doctor prescribed Augmentine 1g twice daily.. I noticed that the rash used to disappear after the course of antibiotic which is a week time only .. but reappear shorty after .. Thus happened twice already . Its pretty clear to me that what she has is related to an infectious agent in her body .. the doctor said lets try to find out if she is a strep A carrier since she gets better on antibiotics. I will get her tested shorty.
The amazing part is coming up , I found a bottle of original pure black seed oil that I bought a while back to help with joint pain ..I thought I’d give it a go and massage it over her body as I know that it’s a natural strong anti-inflammatory .. so on daily basis I rub it all over her body . On day one I noticed a change in color , the redness was less intense . In one week the size of the lesions were very small . After 2 weeks she is spotless!!!! I can see white marks where the lesions were .. To us this is miraculous
She is happy to go to school not needing to try to cover up all the time and explaining to the other kids it’s not chicken pox !!I will continue to use it daily until we try to figure out what is causing them.
Make sure you look for the original black seed oil . It is very dark oil with a distinctive smell .. If the oil is green or yellow then it’s not it or probably fake .
I hope my post helps some of you out there because it’s a very frustrating condition .
Momotaro charlotte1989
Posted
I know we are very frustrated and depressed when we have PLC.
I would like to share that my skin is better from PLC By trying to be under the sun in the morning and I have put cold pressed virgin Sesame Oil on my skin and it really helps me. It improves my skin in very short time.
If you never try cold pressed virgin Sesame Oil, Maybe you should give it a try. It works for me.
Go search benefit of Cold Pressed Virgin Sesame Oil.
I wish it will helps you.