Just a recap"
For over five years now, I have had skin eruptions of varying degrees- They sometimes start as a swelling on my legs and arms, and then a pimple forms and it erupts with a clear sticky crusty liquid. It is disgusting. Occasionally I have facial swelling- twice now around my eye causing me to be hospitalized... I now have two new eruptions on my forehead---sort of like Tom Hanks in “Philadelphia”, as well as on my jowl and even on my left index finger. I count ten such eruptions of varying condition on my right leg, numerous on my left- mostly near healed, and right elbo (looks like a golf ball).
My lymph nodes are noticeably enlarged- in my upper thighs... particularly my right...however my left is gaining on it. This skin issue is what originally brought me to a CLL diagnosis.
I have gone to numerous Dermatologists as well as Infectious Disease Doctors with varied explanations of what may cause this...The only thing that seems to keep it somewhat under control is antibiotics, chemotherapy, and steroids.
The skin issue also was controlled early on with my treatments--- although the CLL was not sent into remission.
2005-Fludarabine Rituxan
2006-Pentostatin Cytoxan Rituxan
2007-Flavopiridol (also hospitalized at JCC- antibiotic IV)
2008-steroids (dexamthasone?) 4 days on 4 days off. I had to discontinue- got extremely weak.
2009-Treanda-discontinued, this treatment did not seem to make a difference...either skin or lymph nodes.
IVIG- monthly, starting last summer
I called Ohio State yesterday and spoke to them about this continuing saga....It was a year ago that OSU first started me on this treatment of Dexamethasone with pretty good results skin wise. I discontinued it in January when I felt it had pretty much beaten me up and weakened me...and caused some erratic behavior.
Because of the return and the intensity of the eruptions/lesions- I have relented to start again on a one week basis- 40mg daily...I need to be off steroids at least a week before I start treatment- supposedly Cal 101- a trial program, loosely scheduled for the end of this month to hopefully prepare me for a bone marrow transplant.
Hopefully this will keep the eruptions at bay...
Randy,
ReplyDeleteI have a question for you and hope it is okay to ask it here. It stems from Tom's scheduled appt today with dermatologist. Dr did a biopsy of one active skin eruption. He said he hopes it sheds some light on this problem. Tom asked him if he thought Vivaglobin, which is weekly sub-q IVIG could be causing the problem. Dr said probably not. But when we got home I decided to look at the Vivaglobin website and found that it can cause skin problems, i.e. reaction. But something else caught my eye. There was something said about skin eruptions caused by some hypertension drugs. Tom was put on Diltiazem CD just before all of this trouble started. So I looked up reactions to Diltiazem and lo and behold, it has been linked to adverse cutaneous reactions
as severe as skin eruptions. Are you on anything for high blood pressure or hypertension like a calcium channel blocker (of which Diltiazem CD is one)? Just wondering if both of your problems may really be drug reactions made worse by wonky immune systems.
Sorry,the skin eruptions came at a time when I was taking virually no medications...
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