[mwRob]

vasculitis and gi distress

by mwRob on Thu Mar 22, 2012 11:34 am

My wife was diagnosed with multiple myeloma in April 2011. She also had two different bouts with breast cancer in 1995 and 2007. She received an auto stem cell transplant in October 2011 and was in remission until Feb 2012. We were hoping for much longer. She is currently being treated with Velcade, Revlimid, and Dex. Her main problem, which has become quite serious, is associated with vaculitis flareups which seem to be affecting her intestines also. These are severe one to two day attacks with intense upper abdominal pain, nausea, and diarrhea. These terrible episodes started about three years ago (before multiple myeloma dx) and seemed to disappear after the transplant until the last six weeks. It appears about once a week and has resulted in one recent ER visit for morphine and an abdominal ct scan. The ct shows inflammation throughout her small and large intestine.

She has had every gi scope and test possible. All of her doctors have been baffled by this and are frankly not doing much about it. Does anyone know a multiple myeloma patient with vasculitis? My wife's manifests as very distinct red purpura lesions all over her body, but mainly arms and legs. They flare very quickly , almost like an allergic response. One biopsy of these lesions revealed abnormal proteins as in multiple myeloma. The doctor involved in this called it Henoch-Schonlein purpura.

We are very frustrated and have been to many doctors in search for answers. Any input would be appreciated.

[suzierose]

Re: vasculitis and gi distress

by suzierose on Thu Mar 22, 2012 11:06 pm

Dear Rob.

Sorry you and your wife are having such a difficult time with her health challenges.
I can understand your frustration and having to visit many medical experts. Your wife has a truly rare condition, only thirty one cases, have been reported WORLDWIDE and the condition is not really understood medically. All of which accounts for your frustrations. Hopefully, knowing the answers are unknown will alievate some of your frustrations and visits to medical doctors.

Here is some info I located:



"Cutaneous manifestations are rare in multiple myeloma and consist of multiple erythematous or violaceous nodules or plaques. LCV is even rarer in multiple myeloma. In a study of 2357 patients with a diagnosis of multiple myeloma, only eight patients were found to have LCV.[4] Leukocytoclastic vasculitis has been reported twice as the first manifestation of multiple myeloma.[1],[5] Marini et al . reported two female patients who presented with recurrent palpable purpura, ulcers and necroses on the extremities who were later diagnosed to have multiple myeloma.[1] Birchmore et al . reported a case of a man with IgA kappa multiple myeloma presenting with a five-year history of relapsing Henoch-Schonlein purpura and polyarteritis nodosa as early manifestations of the disease. The patient also had multisystem large vessel vasculitis (ANCA negative) producing aneurysms of renal and hepatic arteries.[6]

Leukocytoclastic vasculitis is a rare histopathogical finding in cases of multiple myeloma and indicates a poorer prognosis and short survival independent of the therapy.[7] This report highlights the importance of simple investigations such as plasma proteins in the evaluation of LCV and emphasizes the need to investigate patients who do not respond well to conventional therapy."

http://www.ijdvl.com/article.asp?issn=0378-6323;year=2006;volume=72;issue=6;spage=437;epage=439;aulast=Kembre

http://www.ncbi.nlm.nih.gov/pubmed/8630124

http://www.bioline.org.br/pdf?dv06150


"Malignancy is a well-known cause of cutaneous vasculitis. The occurrence of neoplasia and Henoch-Schönlein purpura (HSP) is rare and poorly understood in adults. A total of 31 cases have been reported in the world literature of adult malignancy-associated HSP. Patients were overwhelmingly male (94%) with a mean age of 60 years and presented predominantly with solid tumors (61%). The most frequent tumors were lung (nonsmall-cell) (n = 8), multiple myeloma (n = 5), prostate (n = 5), and non-Hodgkin's lymphoma (n = 3). The majority of patients (55%) developed HSP within 1 month of cancer diagnosis or detection of metastases. We present 3 cases of adults who, in the absence of known precipitating factors, developed HSP within 2 months of diagnosis of a solid tumor or metastases. We recommend that adults, especially older men who present with unexplained HSP, be evaluated for occult neoplasm. We also advise that patients with a known history of malignancy who present with HSP be evaluated for metastatic disease. "

http://linkinghub.elsevier.com/retrieve/pii/S019096220503241X?via=sd

[mwRob]

Re: vasculitis and gi distress

by mwRob on Fri Mar 23, 2012 7:51 am

Thanks so much for the info, Suzierose. We will check it out further. My wife is trying a drug prescribed for Crohns disease called entocort ec. Not much relief so far.

[Kolkina]

Re: vasculitis and gi distress

by Kolkina on Tue Mar 27, 2012 12:40 pm

I can relate to what you are going through. My husband was diagnosed in 1997 with Multiple Myeloma after lesions began to appear on his legs and did not respond to topical treatments. After much investigation, multiple myeloma was discovered. I won't get into his treatment, but he did respond. Remission was achieved for about 4-1/2 years, and a new treatment regimen began. Vasculitis flared up again, and was treated once again, and he was followed by a wound doctor for several months. About three months prior to his death, vasculitis once again heralded the return of multiple myeloma. This time, he was prescribed gabapentin (Neurontin) which was very helpful in treating the sharp, shooting pains associated with the vasculitis. He did not, to my knowledge, have the internal issues your wife does, but he did have a chronic issue with nosebleeds which we believe were related to unhealed lesions.

Your wife has been through a lot of battles already and I wish her well. My husband lived with multiple myeloma for over 10 years (although we suspect it was lurking for a couple of years before diagnosis). I hope for a good response for you both.

[Ladywolf1]

Re: vasculitis and gi distress

by Ladywolf1 on Sat Oct 20, 2012 4:14 am

i have just been diagnosed as probable multiple myeloma. i am seeing a specialist on monday,

is there anything other than narcotics that will ease the pain in my fingers? i have purpura in all 4 fingers with worst in pinky, ring, and middle fingers. the doc put me on dilaudid 2mg to help ease pain, but doesn't seem to be helping much.