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Scleromyxedema

What is Scleromyxedema?

Scleromyxedema is a condition of mucinous deposition in the skin associated with monoclonal gammopathy characterized by a flesh-colored, papular skin eruption. The average age onset is 55 years and there was roughly equal distribution of gender.

 

Scleromyxedema is a condition of mucinous deposition in the skin associated with monoclonal gammopathy characterized by a flesh-colored, papular skin eruption. The average age onset is 55 years and there was roughly equal distribution of gender.
Acknowledgement of Scleromyxedema has not been added yet.
150.0http://www.mayoclinic.org/
Synonyms for Scleromyxedema has not been added yet.
The cause of Scleromyxedema is unknown, but is most probably autoimmune.
Symptoms for Scleromyxedema has not been added yet.
Diagnosis of Scleromyxedema has not been added yet.
Diagnostic tests of Scleromyxedema has not been added yet
Current prognosis is poor, but there is more hope with the IVIg treatment.
Tips or Suggestions of Scleromyxedema has not been added yet.
References of Scleromyxedema has not been added yet.
Survivor's stories Created by ernestdwolfe
Last updated 18 Mar 2013, 07:47 AM

Posted by shar5geo
18 Mar 2013, 07:47 AM

Hi Barb, You should go to scleromyxedema.com to get articles and find answers to your questions. Also, if you are on Facebook, the group is very active there on scleromyxedema. The group is closed and you will be accepted once you apply. Everyone is more than willing to discuss on both sites. My husband has had SMX since 2004 at age 52 and has been treated with Revlimid and Dexamethazone and is in remission but these meds tired him out. He was working during that time but it was not easy. He has other health problems besides SMX and is now on SSID. Thank goodness we have had health insurance through my job! Most members of the group are on IVIG as treatment though so you will hear more about how that is bringing relief to them. Good luck and prayers. Hoping the group can provide the help and direction from their experiences you can use. Sharon George

Posted by barbaraj564666
17 Mar 2013, 10:37 PM

I just wrote a note asking for information on Scleromyxedema. I would like to add my e-mail address. barbaraj564666@gmail.com. If anyone out there can help us with information please contact my e-mail. Thank you, Barb

Posted by barbaraj564666
17 Mar 2013, 10:35 PM

Hi, my name is Barb. My son, Joe, who is 34 was diagnosed with scleromyxedema this year. He has no job and no insurance. He has sores all over his back and fore-arms. He hasn't had any treatment. They gave him prednisone when he had an outbreak of sores but that didn't work for him. The dermatologist we saw did the biopsy and it confirmed scleromyxedema. Without insurance we don't know how to come up with the money to continue any treatment. My husband and I are retired and have limited incomes. Joe just received his CDL license and was hoping to find a job as a truck driver. Joe is extremely tired so much of the time we are wondering if he can hold down a job? No one on this site has said anything about working while having this disease. I would like to know if fatigue is part of the scleromyxedema. Joe doesn't eat much, has no appetite. Are these some symptoms of it. Any information would be greatly appreciated. Thank you, Barb.

View Full Thread (12 more posts)
Monoclonal Gamopathy Created by mahaff
Last updated 30 Sep 2010, 05:43 PM

new to group Created by dnovakowski
Last updated 19 Apr 2010, 11:59 PM

Posted by dnovakowski
19 Apr 2010, 11:59 PM

hello to the group. I am a concerned family member of someone d/x with scleromyxedema. My mom was d/x with the disease back in 2009 after seeing many doctors. Since, her symptoms have gotten drastically worse. It has been recommended that she receive IVIG but her insurance will not pay for it, we are in the process of appealing this. If anyone has any insight we would love to hear your story.

Community External News Link
Title Date Link
Community Resources
Title Description Date Link
Scleromyxedema Support Group

Support group for Scleromyxedema

03/20/2017
Scleromyxedema Survivors

An online resource for survivors of scleromyxedema

03/20/2017

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Survivor's stories

Created by ernestdwolfe | Last updated 18 Mar 2013, 07:47 AM

Monoclonal Gamopathy

Created by mahaff | Last updated 30 Sep 2010, 05:43 PM

new to group

Created by dnovakowski | Last updated 19 Apr 2010, 11:59 PM


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