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ejtauri

Pansclerotic Morphea

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Hi all,

 

I was just diagnosed by the Mayo Clinic with an extremely rare disease called Pansclerotic Morphea.  I just confirmed how rare it is by searching this blog and only came up with one thread.  If it was anywhere you would think it would be here.

 

Anyway, the recommended treatment right now is with Prednisone, CellCept, and UVA1 photo therapy.  I'm in the process of acquiring a home light unit, but in the meantime I'm considering treatment at a University hospital down in Dallas (UTSouthwestern).  Does anyone know of any UVA1 treatment facilities closer to Tulsa, OK?  I can't seem to find any by Google searches.

 

Thanks!

 

Eric

 

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Hi Eric,

 

Welcome to Sclero Forums!  Yeah, you scored really rare form of really rare disease...apparently without even passing "Go!". 

 

It only took me a few weeks to get my home UVA1 unit, through insurance. The key is the doctor submitting the form quickly and properly.  Once I received the unit, they sent out an installer from the factory to unpack it, set it up, and verify the settings.  I'm fortunate in that with my insurance and Medigap, it was covered 100%, because I had a verified diagnosis that UVA1 is indicated for (as I'm sure it would be for pansclerotic morphea, as well.) 

 

To find UVA1 factilities, you need to call and call and call.  Try the largest medical centers and the largest dermatology clinics. And really press them for thorough answers.  The doctor that is in that facility will also need to verify the condition and treatment plan. I must warn you, nearly every place that I called that said they had UVA1 in reality had only UVB. So learn the difference yourself to be able to query them properly.  Also see:  Pansclerotic Morphea and UVA1 Phototherapy

 

:hug-group:

 


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Eric,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with Pansclerotic Morphea. As Shelley's said, it's a pretty rare disease; I certainly can't compete with that, only having limited scleroderma! :wink:  :lol:

 

Shelley has given you some really good advice and I hope you'll be able to sort out your UVA1 treatment without too much hassle.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thanks all.  I have an appointment with a dermatologist in Dallas that is an expert in Morphea and UVA1 photo therapy.  I'm also in the process of ordering my home UVA1 unit, so I'm hoping it helps.

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Ejtauri, you know, a fun thing to do might be to document the whole process involved in getting your UVA1 equipment.  Like, take photos of the equipment set up, explain things from the patient's perspective. Nobody around here has done that before.  

 

Also, if you're game, you may want to consider donating some pansclerotic morphea photos for our ISN Photo Repository.  

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I received my home UVA-1 Photo Therapy unit yesterday. I can't wait to get started.

 

However, there is a bit of confusion over dosage protocol that I'm waiting to clear up with the Dermatologists at Mayo Clinic before actually starting the treatment. I spoke to someone at Mayo today (she has several patients that use the Mayo machine) that is going to sort it out for me, and she also gave me advice and instructions on proper technique to bathe in the radiation and not cause harm. With my unit (National Biological Panasol 3D UVA-1) I'm supposed to stand 8 inches away from the bulbs for a set amount of time and cover the body parts that aren't affected by the PSM. For me, that's my face and groin. She actually advised to wear a paper sack on my head (yeah, no kidding) and some swimming trunks like a Speedo (no pics of me!). Also, the dosage protocol is to start off with minimal dosage and increase dosage by 10 seconds each time 3 to five times per week. The goal is to work your way up to a maximum value that is just short of giving you a sunburn effect. The goal is to find that max value and keep repeating treatments for an extended period of time. If you burn yourself, you are supposed to dial back the setting on next treatment until it doesn't burn. Plus, if you intend to go outside and get sun exposure, then good sunscreen is required or else you may burn easily.

 

I've had lots of comments on other posts (Facebook) where people complained of burning. If this happens your dosage was too high for your skin type.

 

 

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