Suffering from scleredema diabeticorum (Buschke's disease)?

#1

I have just recently been diagnosed with scleredema diabeticorum (Buschke's disease). It's a painful skin irritation on my neck and shoulders, and comes from glucose build-up over the years within the collagen in my skin.

Yes, my sugar's haven't been under control as much as they should - but things changed this summer and I am well under control, and bringing my A1C's down from their existing level (over 8).

This skin condition is painful and I have been losing sleep, waking from the pain. My dermatologist is doing injections within my skin every few weeks, but even she indicated that this can take a long time to remedy - if at all.

Looking to see if anyone else might have it - and maybe build a conversation around the topic. If so, please message me.

Thanks!

Chris

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#2

I don't have this particular issue but suffer from Necrobiosis lipoidica diabeticorum along with granuloma annulare. I have a discussion on this website, but cannot find it. No pain, but UGLY and nothing to cure it. I think this the reason why I hate diabetes the most as it was also a physical sign of the disease for me for decades.

#3

Hi, Karen. I followed you on Twitter (didn't realize you were the same person here). So pardon the redundant tweet. :)

I looked up Necrobiosis lipoidica diabeticorum online - wow, that is horrible. I am so sorry you have that. My skin is discolored as well (neck is grey/purple, which I hide with colored shirts, but no successfully). In addition, for me my skin is thick and tight and really hurts at night. I can't put any pressure on it, which is difficult to do (I never thought a 46 year old would have to fall asleep sitting up).

Anyway, I could imagine your condition is very debilitating. Where are you affected? And don't you hate the fact that these things are virtually uncurable? You would think that with all the money people invest in other disease management, that more attention would be spent on curing diabetes. Sigh.

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#4

I find it interesting all the complications that are rarely talked about in the medical community. I was always worried about eye and kidney issues, and was shocked when I was diagnosed with gastroparesis. I successfully avoided other common complications but was hit hard by a stomach complication with very limited treatment options. Your condition is another complication I’ve never heard about. Hope you find others who can assist with your condition.

#5

Christopher, on my legs since I was young so avoided dresses and shorts most of my life. The NLD finally faded a bit but then the Granuloma Annulare really kicked in this year, so my recent trip to FL and the beach this year were a struggle, but I LOVE the beach. To top it off I got bit up on the last day of our trip by sand bug bites (no see um bugs.) I was a royal mess, so I went to dermatologist last week and she gave me cream for the granuloma annulare(which I have used before)and it is a bit better, and the no see um bug bites are clearing up. We did not even discuss the NLD as we both know that nothing can fix that. I used some heavy duty makeup one year , but that was a pain. Going back in a month for a skin biopsy for something that I still don't see on my back. I guess in the long wrong I am grateful for no pain from my issues. Keep us posted.

#6

Still no luck finding others that have it. My dermatologist and I spoke yesterday, and she had to refer me to someone who does PUVA treatment. That may help...we're taking it day by day. Sleeping is becoming quite an endeavor now - elaborate pillows and makeshift contraptions to prevent pressure to my neck. Think I might have to get a Barcolounger. :)

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#7

Barcolounger, ha. I am hopeful you will find the right treatment.

#8

After a week of using this cream my Granuloma Annulare is fading big time. I don't remember it working this well many years ago, so that is why I did not seek treatment for it again. I cannot believe it is working this well. Told my husband I am ready for the beach again, and he never hears that. Still have the NLD but after 30 years of that, it has faded somewhat.

#9

Just consulted with another dermatologist on this. Looks like they're prescribing a 5X a week PUVA (broadband) treatment for the next year. That is, of course, if my insurance covers it - it is a super rare condition and the treatment is not 100% guaranteed.

I think I might start talking about this on Patients Like Me - where I can track my day to day activities. Certainly, there must be someone out there also suffering from this...

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#10

Christopher I HAVE IT!!! And I have been through hell since 2013. It is an accumulation of mucin in your skin. A thick mucus like substance that is produced in your bowel and lungs. It has attacked my entire body. I am currently on Methotrexate (chemo) 9 pills a week and plaquenil, I also started Victoza for blood sugar. My stomach and back are the worse. I have been through 88 PUVA tx but they did not work. I am in North Carolina but travel to John Hopkins in Maryland for help. I’m also a patient at Duke University. The doctors have NO idea how to help me. I suffer HORRIBLY!!! Please find me on Facebook.

#11

Dear Mr Boyer and Renee17,
I have been diagnosed with scleredema one year ago. I am desperate. I have visited many doctors, but I haven’t seen any improvement yet. My condition is getting worse instead. The skin in my back, chest, hands, legs and belly is getting very hard. Now it expands to my face. I am taking vitamin D, magnesium and some other vitamins, according to my doctor’s instructions. I am very anxious. I don’t know what to do, nobody can help me, nobody knows what exactly I have and the cause of it.
As many years have passed since you have sent the messages, I would like to ask what is your condition now and what treatment did you follow. What did you do?
I am waiting eagerly for your answers.
Thank you very much!

Deny

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#12

@Deny I don’t have any suggestions, but I wanted to let you know, I’m sending hugs, good thoughts, and prayers your way! I hope @Christopher_Boyer and @Renee17 will have some suggestions for you.

#13

Hi Deny!

While I do not have schleroderma, I do have three autoimmune disorders: celiac disease, autoimmune Gastritis and Hashimoto’s Thyroiditis. While I have healed from celiac disease on a strict gluten free diet (per repeat biopsies) I struggle with my Gastritis. While researching, I read about the Autoimmune Protocol diet. Okay. It is a blog site, how valid can it be? Scripps Clinic in San Diego conducted a tiny study following the AIP diet guidelines using Inflammatory Bowel patients (Ulcerative Colitis and Crohn’s). Patients stayed on their medications, but followed the diet for six or eight weeks. At the end of the study patients achieved about a 73% remission rate based on lab biomarkers. That is amazing! After crowd funding, they are now conducting a tiny study on Hashimoto’s patients. More research is needed, but it is difficult to raise money when food is the treatment and not pharmaceuticals.

Of course this may not apply to scherloderma patients, but it might be worth a try. One schlerodoma patient found relief). Anything to help reduce inflammation and lower antibodies that is not harmful (food) could be worth the effort.

Here is the site (learn about the diet) and the study results:

https://autoimmunewellness.com/aip-stories-of-recovery-annas-recovery-from-limited-scleroderma-and-raynauds/

I hope you find this helpful!

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