Lymphomatoid papulosis

I understand the cause is unknown, and there is no cure.  Since October 1988 I have been receiving injections of Methotrexate, 25 mg, now 50 mg, at three-week intervals.  It reduces the severity of the lesions.  I do not want to receive Methotrexate indefinitely.  Is there any risk in stopping the medication?  Is there any topical medication?  I cannot take PUVA treatments due to very sensitive skin.  I would greatly appreciate any advice.

[Alan Rockoff, MD]

Diana:

I am not experienced at treating your condition.  Most likely the only risk of stopping methotrexate is to get worse.  I think your best approach is to ask the doctor who prescribes this for you about alternative means of treatment.

Good luck.

Dr. Rockoff

[Diana Struven]

Thank you for your reply.  The local Dermatologist does not have any suggestions or opinions.  I will try a large teaching hospital, in person; such as JHH in Baltimore.  But thanks, anyhow.

[Alan Rockoff, MD]

For an uncommon condition with powerful medications, that indeed is your best bet.  Good luck.  Dr. Rockoff

[Barbara]

WHEN MY DAUGHTER WAS 2 1/2 YEARS OLD SHE STARTED TO HAVE THESE LESIONS ON HER. SHE WAS SEEN BY THE DERMATOLOGIST IN MY TOWN. HE DID NOT HELP HER SO HE SENT HER TO RHODE ISLAND FOR A TEAM OF DOCTORS TO SEE HER.  WELL, THEY SENT HER TO BOSTON. IN BOSTON  THEY DIAGNOSED HER WITH MUCHA HABERMANN.  WELL, FOR YEARS THAT'S WHAT WE THOUGHT SHE HAD.  WHEN SHE WAS 12 I TOOK HER TO ANOTHER DOCTOR AND SHE HAD MANY BIOPSIES TAKEN AND THEY WERE SENT TO MANY DOCTORS.  THEY DIAGNOSED HER TO HAVE LYMPHOMATOID PAPULOSIS WHICH THEY SAY IS SOMEWHAT RELATED TO MUCHA HABERMANN DISEASE.  WHEN WHE WAS 22 SHE WENT TO BOSTON AGAIN AND THEY REALLY DIDN'T HELP HER AT ALL.  ALL THEY SAID IS THAT IF ANYONE OF THE LESIONS SEEM TO CHANGE TO GET IT CHECKED RIGHT AWAY.  SHE FINDS THAT GETTING SUN ON THE LESIONS DRIES THEM UP.  THE DOCTOR SAID THAT IT WAS OKAY AS LONG AS SHE PUT #15 SUN TAN LOTION ON. HER LESIONS ALSO DRY UP WHEN SHE GOES SWIMMING IN SALT WATER OR JUST DABS THE SALT WATER ON THEM.  I WANT HER TO SEE ANOTHER DOCTOR SO NOW WE HAVE BEEN WAITING FOR THE RECORDS FROM BOSTON SO WE CAN MAKE ANOTHER APPOINTMENT TO SEE ANOTHER DOCTOR.  SHE IS NOW 25 AND IS SO SELF-CONSCIOUS OF HER SKIN.  MAYBE IF SHE COULD TALK TO OTHERS WITH THE SAME PROBLEM SHE WOULD FEEL BETTER AND MAYBE SHE COULD ALSO HELP OTHERS. HOPE YOU CAN RESPOND. YOU CAN E-MAIL ME AT ***@****

[[e-mail]]

Diana-

I unterstand that the big research is being done in Boston at Beth Isreal.  Dr Kadin is the doctor doing research at Beth Isreal.  Let me know what else you have tried.  I've heard of Methotrexate pills taken once a week.  
Let me know-***@****

[Diana Struven]

Reply to hass' message of 9/26:  my original question had a typo; I began Methotrexate in 1998, not 1988.  The dermatologist had never seen the condition and, apparently, didn't try to learn about it.  As a result, he gave me injections at three-week intervals.  The doctor I am seeing now has experience with this condition, and he says Metho. should be given in pill form once a week -- exactly as you stated.  Since it didn't help much, and since I didn't want to continue with it, I am now getting PUVA, with my head covered, and it is helping much more than the Metho. did.  An MD in Baltimore said that [PUVA] is the treatment of choice.