Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Survivor's stories

ernestdwolfe Message
11 Feb 2009, 08:48 PM

Hi group. Just to get things rolling, here is my story: I was first diagnosed with papular mucinosis in 1996. For the next few years I continued to get slowly worse in spite of all of the usual ineffective treatments ( no surprise.) In 2004, my symptoms got really bad in a hurry. I managed to get in to Johns Hopkins in Baltimore. After much wasted time there I finally was seen by a doctor who knew what she was doing.She diagnosed full blown scleromyxedema and put me on IVIG. After 3+ years of treatment, my symptoms almost disappeared. It's now been over a five years (total of eight since diagnosis) and nothing has returned. I have a few residual things wrong, but nothing to worry about. I still get IVIG every 13 weeks. I'll be glad to share all I know with anyone who is interested. Rather than write everything here, I'll happily answer any questions. The bottom line is that there seems to be hope. IVIG is a wonder treatment. The only problem is getting your insurance to pay for it. That can be done- I'm proof. Ernie Wolfe
dnovakowski Message
19 Apr 2010, 11:52 PM

Hi to the group. I am a concerned family member looking for info regarding this very rare disease. My mom was d/x back in Sept of 2009 and has increasingly gotten worse over this short time period. She also was recommended to receive IVIG (for its effectiveness and it being the least toxic) but her insurance will not pay for it and we are going through the appeal phase. We have been seen by many dermatoligists and they all recommend this treatment which is extremely expensive. If anyone has a similar situation we would like to hear your story. I
timkosally Message
20 Apr 2010, 01:20 AM

Be sure to bring every article on ivig and smx to your ins. co. tell them about this site and good luck
irishlivi Message
22 Sep 2010, 11:29 PM

Hiya Im looking to speak to Ernie Wolfe but dont know how!! I have just been diagnosed with Lichen Myxedematosus. Im already on IVIG and had 4 doses every 4 weeks. Im in soooo much pain all the time and Im scared and lonely and was hoping u could help me, your story is the only positive thing ive read about so far!!! Olivia
ernestdwolfe Message
11 Oct 2010, 07:03 PM

Hi Olivia, I'm soooo sorry that you have Lichen Myxedematosus (LM). Scleromyxedema (SMX) is a group of conditions that all come together under the SMX name--LM, Papular mucinosis, and several lesser known variants are all names for the early symptoms of SMX The bottom line is that, if left untreated, it may progress to the much worse condition that can be life threatening, namely scleromyxedema. You are being treated with the best chance of survival that we have available today, namely IVIG. It may be painful and not fun but it sure beats the alternative. Most people respond well to IVIG and can have long happy lives, so keep your chin up and keep up with the treatments. The odds are that they will work and you will do well. If I can answer any specific questions let me know and I'll do my best to answer. Give your daughter an extra kiss tonight. She's a good reason to keep trying. Ernie Wolfe
ernestdwolfe Message
11 Oct 2010, 07:17 PM

Hi dnovakowski, Somehow I missed your post so this is late. How did your appeal turn out? If you were still denied, you should check with other insurance companies during your next open season (if you have one) and see if any of them will cover IVIG. I retired from the government and about half of the government insurance companies WILL cover IVIG for SMX. If you are still having trouble, see if you can get a referral to Dr Laura Hummers at Johns Hopkins University in Baltimore. Then get an appointment and see her. She has a good track record of getting insurance companies to pay for IVIG once she confirms your diagnosis. She has close to a dozen SMX patients and is certainly the US expert on this disease. let us know how you make out. Ernie Wolfe
irishlivi Message
11 Oct 2010, 11:07 PM

Hiya Ernie, Thanx lots for getting back to me. I woke up to your message and it feels great to finally hear from someone who has this awful illness. Ive just filmed a current affairs programme here in Perth trying to find someone who has it or a Dr who has treated it. Im supposedly the only one in Australia with it, but there seems to be lots in the States. I get very lonely here with no one to talk to about it and its taken over our lives. I guess Im blessed to have started the IVIG so quickly and to have gotten it so easily. I just really wanted to know what kind of symptoms everyone gets as mine came on so fast and Im in chronic pain everyday, my lungs are affected and I get words mixed up. My muscles are pretty weak and everything hurts. Im getting the best medical treatment and have great Drs and support family wise but its still tough been the only one!! I spend my days in hospital, having hydro, physio, tests, and see every Dr possible, for my heart, lungs, eyes, endocrinologists, dermatologists, immuneologists,etc My muscles are wasting away and now need orthothics for my shoes and knee braces, the list goes on and on. My daughter is great and defo helps me fight this horrible thing!! Thanx for getting back to me and I hope your doing good. Olivia Williams
cmgdoyle Message
28 Jun 2012, 07:51 PM

Hi All, I've just been diagnosed with scleromyxedema and am in shock! I have been generally unwell for many years but it wasn't until this godawful unsightly rash appeared and I was sent for biopsies that I received my diagnosis. IVIG is proposed but I am now wondering whether indeed my insurance company will pay for it. I hadn't given any thought to that side of it until I read the above. Have any of you tried alternative remedies? And how are you all doing now, 12 months down the line? I hope things have improved for all of you. If any of you has any advice, I would love to hear from you as I am so not informed. Thanks. Catherine
ernestdwolfe Message
1 Jul 2012, 02:38 AM

Hi Catherine, Sorry to hear about your diagnosis. The important thing to keep in mind is that this condition is treatable. I could write you a book on other treatments but the bottom line is that IVIG is the magic bullet. Push hard to get it. Where are you located on planet Earth? I might be able to find you a Dr in your locale who can help. The Drs who treat scleromyxedema all know each other and work together to fight your insurance company. Do not put off treating this condition !!!!! The longer you wait the worse you will get and the more long term problems you will be stuck with. Trust me on this. Let me know, Ernie
cmgdoyle Message
8 Jul 2012, 11:01 AM

Thanks a mill Ernie for responding. It's just great to hear from somebody who knows and understands all about SMX. I'm from Cork in (southern) Ireland. My own dermatologist is confident of starting me on IVIG very shortly.The shock is wearing off now and it's great being at home, having been in hospital for a full two weeks. But I know I have a lot of hospital ahead of me and that's okay too once I'm getting the correct treatment. It's wonderful to hear that 8 years on from having been diagnosed with SMX that you are doing fine. That gives me great hope. I am hearing great things about Dr Hummers and will alert my own dermatologist to her (I'm sure they already know one another) at a case conference being held about me (I'll be present) this coming Tuesday. I will let you know I get on at that and about my progress. Thanks Ernie for making contact. I don't feel so alone any more. Kindest regards, Catherine
ernestdwolfe Message
8 Jul 2012, 03:06 PM

Hi Catherine, Its good that your dermo can prescribe IVIG. Here in the US it takes a Rheumatologist to get past the insurance companies. Be sure and ask your dermo to do a "serum protein electrophoresis" blood test looking for an "M" spike. The results together with other tests will confirm that you have smx and not something else. Here in the US after you have been infused a few times in a hospital, the insurance companies will let you get infused at home. A visiting infusion nurse comes to your home and does everything. You can still maintain some of your normal life albeit with a tube in your arm and a pump hanging around your neck. Be sure to ask after a few infusions. The bottom line is that SMX is a death sentence, but so is being born. With proper treatment you can live long enough that something else gets you first. That's no different than anyone else. Keep in touch. Ernie
cmgdoyle Message
12 Jul 2012, 02:47 PM

Hi Ernie, just letting you know that I commence IVIG on Monday next. I will receive infusions over a 5-day period in hospital BUT will be allowed home by night which I'm thrilled about as nothing can beat the comfort of my own comfy bed! :-) I am, naturally, a little apprehensive but as I write I am in so much joint pain I know I don't have any choice whatsoever but to get on with it. My dermatologist is extremely positive and that also has rubbed off on me. She is in contact with former colleagues at the Mayo Clinic and I am confident that this death sentence bestowed upon me will be sidelined within a few months. Hope you are keeping well. I will be in touch to let you know how it all went. Thanks for your support. Catherine (aka Kay)
barbaraj564666 Message
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.
barbaraj564666 Message
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. If anyone out there can help us with information please contact my e-mail. Thank you, Barb
shar5geo Message
18 Mar 2013, 07:47 AM

Hi Barb, You should go to 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