PLEVA, Mucha-Habberman's disease
Dave

Newport News, VA

#325 Dec 10, 2009
I have been dealing with Pleva for 3 yrs. now. I have had so many blood tests/CT's derm biopsies. Was on so many creams/antibiotics (biaxin 500mg a day. Finally found what works. Went on Prednisone for chiggers (red bugs) in June. Then two more small doses for poison ivy. And one more for a hornet sting (i am allergic to all of the above. However, pleva cleared up pretty darn good. Went to a derm at VCU per my internist.in Richmond, VA. She put me on doxycycline 100mg twice a day. Spots came back. Prednisone is the best. However, you cant stay on that stuff for a long period of time. So does anybody else have anything that works without steroids? Plus this pleva gives me headaches, chills, and truly feel rough. Sometimes I feel so bad I dont know if I will make it. Anyone with help would be greatly appriciated. Doc's dont know nothing about this stuff.

Since: Jan 09

Valdez, AK

#326 Dec 10, 2009
Please take a look at the links I wrote on the two previous posts. I strongly believe the 'feeling so bad' is the autoimmune hemolytic anemia that is there, but not easily found unless doctors look at the same info in a different light: what harm to suspect from glycol ether. "The chills," rapid heart beat, shortness of breath are 3 of the basic 8 signs of AIHA or IMHA. Do you recall a serious flu or several 'smaller' flu symptoms? What were you doing differently right then? Do you have abnormal body temp?... blood sugar?... blood pressure?
Ivy

New York, NY

#327 Dec 12, 2009
Dani wrote:
I’ve had PLEVA for a little over 9 years now. I found that my first breakout was by far the worst, with over 3,000 lesions. I first was diagnosed with PLEVA not long after having MONO which very much affected my immune system. I do believe PLEVA has something to do with low immune systems. Whether it may be MONO, HEP B ect. I find that I suffer from PLEVA more after getting sick with your common cold/flu, just at the time my immune would be low. After MONO was first diagnosed with SHINGLES which is a form of chickenpox, I have been told by several dr’s that PLEVA is also a form of the chickenpox. I did use a topical steroid which did not work. I also used tetracycline which also did not work. I have found that natural sunlight and UV light works best but still does not alleviate my breakouts. PLEVA has come and gone throughout the years but has recently come back and is PAINFUL, ANNOYING AS HELL and COMPLETELY EMBARRASSING! At times it even controls my life. I don’t feel like going anywhere, doing anything, and constantly feel as if my skin is all people see. I feel for all of you and do hope someone can come up with a cure or at least an understanding of what causes this rare disease. I would love love love to try methotrexate (the oral chemotherapy) but am afraid of it making me sick as well as being dependent on it. Thank you all for posting your testimony on living with PLEVA seeing this reminds me that I am not the only one going through this.. 
I to was embarrassed when I had the pleva this past summer. I was also depressed. I hated to go out. When I did go out I had to cover my pleva because I didn't want people to see it. Here I was covering my pleva with long sleeves in the summer (90 degree weather). I suffocated wearing long sleeves in the summer, but I got through it. I did a lot of research on the medicine you mentioned (the oral chemotherapy). It's a very strong medicine with to many side effects. When I was at my worse with pleva I was tempted to tell my doctor to prescribe it for me. However, I was afraid that I would lose my hair and then I would be even more embarrassed. Tell your doctor to prescribe an oral steroid medicine for you (prednisone). Steroids seem to help a lot because they shut down your immune system and for some reason the pleva seems to subside. Try bathing with Hibiclens every day it should help dry them up. I would also recommend that you take a multivitamin everyday. I hope that you are doing better. Take care.

Since: Jan 09

Valdez, AK

#328 Dec 12, 2009
Do you have a tired-all-the-time feeling like Dave? There is a Dave in city mentioned in Canada who is an airline safety inspector. I think that would cause various exposures to glycol ether as well as those we get 2nd hand from others AND in our own homes. http://www.valdezlink.com/re/paint/painterswi...

Yes, I think you are dealing with an autoimmune issue (many of them) HELP? http://www.valdezlink.com/pages/autoimmune.ht...
... things like gamma globulin, Rituxin (if cancer shows up), and OPC-3 and glycolnutrients may be helpful. Transfusion of whole blood if seizures are showing up because of the anemia (Lack of oxygen is a cause of seizures)
Ivy

New York, NY

#329 Dec 13, 2009
Please email me if prior to developing pleva you had been prescribed any type of Betalactam antibiotics, penicillins, cephalosporins? or NSAIDs, both oral or topical? or Sulfonamides? As per my skin biopsy the only differential diagnosis would be a drug eruption. Also called drug Hypersensitivity Syndrome. It is defined as the triad of fever, skin eruptions and sometimes internal organ involvement. It is always caused by a drug. The reaction usually begins 2-6 weeks after the drug was started. Treatment, which may be required for weeks or "months", may include high potency topical corticosteroids. Starting to sound familiar?(My pleva took 7 months to clear up). The mechanism for this reaction may involve a number of factors including: genetic inability to break down particular drugs, immune mechanism, viruses specifically, HHV-6, HHV-7 & EBV. Prior to my pleva outbreak I was prescribed SMZ-TMP DS for several weeks. SMZ-TMP is a betalactam antibiotic and it is very powerful. I found out that is can sometimes suppress your bone marrow, which could explain why my wbc was so low during my pleva outbreak. This is another theory that I found, which can be the root cause of pleva.
paul e hampstead nh

Farmington, NH

#330 Dec 18, 2009
I would like to ask everyone if they can remember getting any kind of innoculation prior to
their outbreak .. like a flu shot, pneumonia shot, tetnus shot, etc..etc.. If yes, what was the
injection and how soon did you get it before the outbreak . I believe this information could be
very helpful . Thank you
Joel

United States

#331 Dec 19, 2009
I can relate all three of my worst pleva outbreaks to the influenza vaccine. First year I recieved it was the worst. I've assumed it was my immune system reacting and building antibodies to this. The hospital I work for required us to all get the vaccine and lo and behold, it came back. From the time I was injected, probably week or so until I started noticing my skin react.
Ivy

New York, NY

#332 Dec 19, 2009
Joel, Sounds like you had an allergic reaction to the vaccine. Also known as "Hypersensitivity Syndrome". If you get a chance read my previous posting dated Dec. 13th. If I were you I would not get any more vaccines. Just load up on vitamin c (3000mg per day) and wash your hands a lot to avoid getting sick. Tell your private physician to give you a letter stating that you had an allergic reaction to the influenza vaccine. That way next time your employer demands that you get the vaccine you can give them a copy of the letter and hopefully you will be excused.
Good luck.
paul e hampstead nh

Farmington, NH

#333 Dec 21, 2009
I have just read Robyn's reply on page 2 about her using
Photochemotherapy UV-B, PUVA rays . It was very helpful.
Has anyone else used this treatment and if so, how did it work
for you. I am trying to make the decision with my Dermot. about
doing this. The sores are now reaching my face. Just terrible...
Any more info about this treatment would be helpful, especially
side effects if any.. Thank you all and best of good luck...
paul e hampstead nh

Farmington, NH

#334 Dec 21, 2009
Robyn wrote:
Hi all,
I have had PLEVA for almost two years now and have been on several different types of treatments including methotrexate--which didn't work for me--and I agree with the sentiment above that it's really nasty stuff. My sister, a chemist, found out for me that methotrexate works a lot better and doesn't cause you to get sick if you take it with a very fatty meal so that helped a lot. At my worst, I had about 3000 PLEVA lesions. I've been on photochemotherapy (oxsoralen + UVA light, aka PUVA) for almost a year now starting with 3 sessions per week and am now on a maintenance cycle of one treatment every other week. PUVA has been miraculous for me--I'm now down to about 30 active lesions at any given time and, though my doctor is frustrated that he can't cure me, 99% better is a-ok in my book. PUVA has the added bonus of getting rid of the white scars/areas
without pigmentation that PLEVA often leaves behind. I just thought I'd let you all know since no one else had mentioned PUVA above.
Hi robyn: I am considering this type of treatment. Can you add anything else to what you have
already explained, which has been very helpful to me. How are you now. Were there any bad
side effects..? Thank you for any additional info.. Paul
dott

Kingston, Canada

#336 Jan 1, 2010
[does anybody have the big ulcerated sores? what do you do for them? they are big and fluid drains out of them if they break. they have a big dark middle in the centre of the sores and they take days and days to go away. other pleva sores are just the small red dots . pleva seems to come in different forms of sores. I am just learning about pleava. thanks

Since: Jan 09

Valdez, AK

#337 Jan 2, 2010
dott wrote:
[does anybody have the big ulcerated sores? what do you do for them? they are big and fluid drains out of them if they break. they have a big dark middle in the centre of the sores and they take days and days to go away. other pleva sores are just the small red dots . pleva seems to come in different forms of sores. I am just learning about pleava. thanks
Wounds do not heal / can be ATLL
http://www.valdezlink.com/re/cancer/atll.htm

I suspect exposure to glycol ether would cause this. It is in MANY products. Exposure 'looks like' the flu
Ivy

New York, NY

#338 Jan 2, 2010
dott wrote:
[does anybody have the big ulcerated sores? what do you do for them? they are big and fluid drains out of them if they break. they have a big dark middle in the centre of the sores and they take days and days to go away. other pleva sores are just the small red dots . pleva seems to come in different forms of sores. I am just learning about pleava. thanks
Hi Dott, In regards to the soars that don't heal you MUST get them cultured by a dermotologist to see if there is any bacteria present. You must also be careful that they do not become infected. If they do become infected it can go into your blood system and cause havoc. A wound that does not heal can be a result of a staph infection (MRSA). My pleva was never that bad. It definitely sounds like there's something else going on with you in addition to the pleva, which should be investigated further by a physician. Good luck.
dott

Kingston, Canada

#339 Jan 3, 2010
Thanks, i will make a doc appt as soon as i can to have someone look at these spots. To anyone that has used the light treatment for PLEVA, once you stopped it how did the pleva react? Did it start back up again?
ncf

New Orleans, LA

#340 Jan 8, 2010
Cal wrote:
i have recently been to a derm. who thinks i might have PLEVA- also known as Mucha-Habberman's disease. Let me tell you- it pisses me off more than i can explain, i don't even feel comfortable taking my shirt off in front of my girlfriend. Can anyone tell me what the C U R E is for this annoyance???
there is no cure but i have found that methotrexate and puva and regular sunlight has had mine under control for 4 years now!!!
dott

Kingston, Canada

#341 Jan 11, 2010
hello NCF,
Have you been on the methotrexate and the light treatment for four years non stop? thx
jae

Pretoria, South Africa

#342 Jan 11, 2010
Don't even mention 'annoyance' i have to wear long sleeve clothing in summer just imagine,.,.,, how irritating
Mini Mouse

Prairieville, LA

#343 Jan 12, 2010
Who gets pityriasis lichenoides and why?
Pityriasis lichenoides most often affects adolescents and young adults, usually appearing before the age of 30. It appears to be slightly more common in males. It is rare in infants and in old age.

The cause of pityriasis lichenoides is not yet known but 3 major theories exist:

An inflammatory reaction triggered by infectious agents
(NOT good to know)A relatively benign form of T-cell lymphoproliferative disorder
An immune-complex-mediated hypersensitivity vasculitis
Infections that have been associated with both PLC and PLEVA include:

Toxoplasma gondii
Epstein-Barr virus
HIV
Cytomegalovirus
Parvovirus (fifth disease)
Staphylococcus aureus
Group A beta-haemolytic streptococci

Since: Jan 09

Valdez, AK

#344 Jan 13, 2010
Mini Mouse wrote:
Who gets pityriasis lichenoides and why?
Pityriasis lichenoides most often affects adolescents and young adults, usually appearing before the age of 30. It appears to be slightly more common in males. It is rare in infants and in old age.
The cause of pityriasis lichenoides is not yet known but 3 major theories exist:
An inflammatory reaction triggered by infectious agents
(NOT good to know)A relatively benign form of T-cell lymphoproliferative disorder
An immune-complex-mediated hypersensitivity vasculitis
Infections that have been associated with both PLC and PLEVA include:
Toxoplasma gondii
Epstein-Barr virus
HIV
Cytomegalovirus
Parvovirus (fifth disease)
Staphylococcus aureus
Group A beta-haemolytic streptococci
I looked it up and found an article about it occurring with autoimmune hepatitis. I suspect there are a lot of 'rare' things that would go along with exposure to glycol ether ... which causes multiple autoimmune issues to begin. Exposure looks like the flu or ongoing congestion, sniffles, diarrhea. Easy to be exposed, and to have effects if a parent was poisoned prior to one's conception. I think many baby boomers get the autoimmune issue of late to show up 'diabetes'... or why we have so much loss of eyesight. We have to admit that there is an epidemic of autoimmune issues & cancers out there, and so far researchers aren't aware of the first culprit to blame.
Pam

Ashburn, VA

#345 Jan 15, 2010
Went to the CLEVELAND CLINIC again as I am at a loss. Doxyclycline and Ethromycin don't seem to work at all anymore, have had Pleva for about 8 years now. Dr. Hamrock put me on Methotrexate now and I still burn at the light therapy so they can never give me enough of a dose to really help. It's been on my face now for weeks, uck!

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