(For my aunt) Looking for medical recommendations for autoimmune disorder causing horrid skin condition, i.e. giant blisters.

Hi Everyone,

I think there are two or three questions in this post. My elderly aunt lives 30 minutes from SOMA. I am trying to help her find the right doc to treat her. She was given a recent diagnosis. It is an autoimmune disorder causing an extensive rash with enormous blisters over her entire body. She has had it for two months, and it was only recently diagnosed. Is there a dermatologist you can recommend who specializes in autoimmune disorders? Or an autoimmune doc who specializes in dermatology?

Here is the second part of my question: how do I go about finding out if there is medicare coverage for a visiting nursing service that can help with her treatment, which involves cream application and bathing? Do I begin with visiting nurse services or her doc's office and if so which doc? Thank you for any help with this.


You could try Dr. Evelyn Tolston in NYC: (646) 424-0400. She is an allergist and immunologist, and I believe she takes insurance.


lisat, the other part of question us a little more complicated. Has your aunt been given a list of safe products to use? If not, even water may be a problem, let alone what she's using to sponge and wipe with.

If you can get a speedy appointment, great! Otherwise, Home Instead may have some ideas - I've always found their care coordinators to be very helpful colleagues with delicate, tricky situations even if it doesn't result in immediate business. Feel free to mention that a friend from the Gold Coast, Australia mentioned the company. grin (We network professionally, each month, with around 80 care agencies)


I can't offer personal experience, but:

Institute for Rheumatic and Autoimmune Diseases

Overlook Medical Center, Medical Arts Building 1
33 Overlook Road, Suite L01
Summit, NJ 07902
Phone: 908-598-7940


Center For Rheumatic And Autoimmune Diseases

Rheumatologists, Internists, Diagnostic Laboratory Immunology Internists

200 S Orange Ave Livingston, NJ 07039-5817 (973) 322-7400

http://www.vitals.com/group-practice/new-jersey/essex/livingston/center-for-rheumatic-and-autoimmune-diseases/#ixzz4LgO2lDLp




lisat said:



Here is the second part of my question: how do I go about finding out if there is medicare coverage for a visiting nursing service that can help with her treatment, which involves cream application and bathing? Do I begin with visiting nurse services or her doc's office and if so which doc? Thank you for any help with this.

The former. The provider of the service will (certainly) know what's required for it to get paid by the payer you mentioned.


Thank you all so much. The new dermatologist whom she saw yesterday (didn't know she had an appointment with a new one so quickly) switched her from topical to oral steroids and says she'll be much better in a month. She's feeling hopeful, and not having to slather cream everywhere will be easier for her. I did a bunch of research to the best of my ability and found interesting connections between vitiglio, IBS, ulcerative colitis and bullous pemphquoid, which all run in the family and are autoimmune disorders. What joy.

I will pass along your suggestions to her, and will keep them top of mind as I help her to the extent she wants or needs. It sucks growing old, and the alternative is usually worse. Oh well... I keep thinking it's time for me to develop the quiet internal warrior stance of a wise and intrepid older woman. But I don't feel intrepid or wise most days, and then I say it isn't easy to do, which is why it's special. I'll let you know if any bright ideas come my way.


medicare generally only provides short term home health care....if she needs a home health aide long term and owns property or has other assets, medicaid will expect those to be used first...if there is no cash on hand, they will just charge the services against the value of the home...if she is not generally home bound, i doubt either would pay for home care.


as you know, autoimmune stuff usually responds well to selective micronutrients. If it's possible, contact the specialist, and find out if there's a list of dietary do's and don'ts that will best support minimal swelling and reduced pain.


hope the meds work and don't need to be long term...I was on prednisone (steroid) for poison ivy (a little gift from my kitty)...i couldn't tolerate them..even after starting to ween down after a couple days and being off withing a week, I almost ended up in the ER.....and they suppress the immune system which can cause complications (just like the biologics for auto immune conditions)



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