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Help with Morphea treatment

Posted by gila @gila, Dec 23, 2023

I was just diagnosed by skin biopsy with Morphea scleroderma after 2 years of constant fatigue and many changing symptoms after having my second round of Covid. I was fully vaccinated with the Pfizer vaccine. My plaques are mostly my chest, trunk and upper thighs. Currently taking Hydroxychloroquine to calm immune system down and Gabapentin for the nerve pain, the pins and needles and burning skin. I also have clobetasol ointment twice a day mixed into Jojoba oil to my skin. The doctor says Morphea often “burns itself out in 5 years”, but can come back. I would like to connect with others who have or have had this disease. What treatments worked best for you? Did your disease go into remission? Did your muscles also ache and get very stiff? Did diet affect your symptoms? I seem to react to many foods now.
Thank you

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John, Volunteer Mentor | @johnbishop | Jan 29 9:02am
In reply to @anakr "@sarahintexas Hello, I've just been diagnosed and I have so many questions. My first question is..." + (show)
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@sarahintexas
Hello, I've just been diagnosed and I have so many questions. My first question is what is the Autoimmune Protocol?
I've just started with topical creams and may get the phototherapy but that is still to be determined.
Would appreciate hearing about someone's experience with phototherapy.
Thank you!
Ana

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Hello Ana @anakr, Welcome to Connect. I thought I would respond to your reply to @sarahintexas to let you know there is another discussion on your question that you might find helpful:
-- AIP diet for autoimmune illnesses: https://connect.mayoclinic.org/discussion/aip-diet-for-autoimmune-illnesses/

While you wait for others to respond I did a search of Connect for members who have posted about phototherapy and thought you might like to scan through the discussions and comments on the topic - https://connect.mayoclinic.org/search/.

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sarahintexas | @sarahintexas | Jan 31 9:17am

Hi Ana, thanks for your note! You were diagnosed with Morphea? Sorry to hear, and hope you're working with a doctor you like. At the time my Morphea was active (over 24 years ago) phototherapy wasnt offered to me, but I too tried some creams. The Autoimmune Protocol is a temporary diet, in which you restrict all known inflammatory foods and drinks for a time, and then start adding them back one by one, to test whether they worsen your autoimmune condition. This is typically done under the direction of a doctor, and I'm not sure whether it's believed to help Morphea symptoms. And in fact, my current Rheumatologist doesn't believe food restrictions will help with my autoimmune conditions (recently re-diagnosed as Lupus, MCTD, and Hashimoto's). Regardless, the removal of processed, gluten, and dairy items makes me feel better overall, so I'll keep it up for a bit. Wishing you all the best!

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