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new member

kenny1959 Message
12 May 2018, 08:14 PM

Dear Auturo, 

i just discovered this website and I am esger to get information from you and the other members ! I was diagnosed just a few months ago here in Houston. My biggest probem is my legs ! They have a lot of edema. I can walk but need a walker some of the time. I just started seeing a doctor at the Houston Medical Center who is trying to get gamma globulin for me, bit it is very difficult through Medicare. In the meantime, I am taking Humera, and it has not helped my edema. It did help my leaking i my legs.

I would appeciate any and all information you can give me particularly about procuring the IVIG treatment. I am most eager to talk with other people with SCLS as I feel so alone not knowing anyone with this disease.

I will be waiting to hear from you and other members. I will be happy to answer everyone who writes to me.



aporzeca Message
13 May 2018, 11:37 PM

Welcome to our community, Annette!  There is a lot of information for you here, so take the time to acquaint yourelf with the sections "Community Details," "Disorder Details," and the last dozen or so threads under "Discussion Forum."

Please fill out your profile page providing as much detail as possible on how you came to be diagnosed with SCLS, because we are still learning from one another.  One thing you should know is that there are a number of swelling disorders which are NOT manifestations of SCLS.  Ours is an episodic disease where if there is swelling, it comes and goes within days -- but it does not linger.  Therefore, I suggest that you ask your main physician that he/she gather your medical history and send it to Dr. Kirk Druey at NIH -- see "Disorder Details" for his contact information -- in order for him to provide (or not) confirmation of your SCLS diagnosis.  The last thing you want is to be treated for the wrong illness!

As concerns procuring IVIG treatment, this is indeed the recommended preventive therapy for confirmed patients with SCLS, but it is not yet an FDA-approved indication, and thus, since IVIG is extremely expensive, it is often rationed or even denied.  In the case of the Medicare program for the elderly in the USA, up until now Medicare's contractors have routinely denied coverage of IVIG for SCLS, so the only ways to get it are (1) for your prescribing physician to make no mention of SCLS and attest that you have one of the several illnesses for which IVIG is FDA-approved; or (2) for your prescribing physician to make mention of SCLS, whereupon you may get the treatment but likely only by your assuming personal financial liability, followed by your having to appeal the Medicare denials that will come.

I am working on a solution to this problem with Medicare, so get in touch with me again if/when your SCLS diagnosis has been confirmed by Dr. Druey.


dallen Message
14 May 2018, 03:50 PM

Arturo, In June, 2016 I sent you Medicare Insurance coding information from my husband's (Gene Mahaffey) doctor. They provided it in order to help any other patients with SCLS and said it contained all the information and codes they used to receive approval from Medicare for my husband's many IVIG treatments. They even included name(s) for you to contact if you had any questions. Their only request was that only one person contact them as it is, in fact, a small doctor's office and they don't have the personnel to receive calls from multiple people. When I sent it to you it was with the understanding you would head it up for everyone.

Did it not work? Do I need to resend it? Just curious as to whatever happened with the situation.


aporzeca Message
15 May 2018, 01:42 AM


I did pursue the matter to the very end with the information you provided, and after a lot of back and forth I still wasn't able to figure out how Gene managed to get coverage for his infusions.  However, the country is divided up into 13 Medicare jurisdictions, each handled by a different private contractor -- and they rotate them after a few years -- so he may have gotten lucky in a way that others haven't been.