Does Anyone Else Have Ledderhose Nodules

[Amle]

Ledderhose Nodules or Plantar Fibromas? Nodules in the arch of the foot. I know that these are not related to scleroderma but they are a collagen overgrowth and I am just wondering if anyone has had this also and/or seen any improvement when going on AP in this side issue? My AP appointment is still 2 months away.

[richie]

AP would have no benefit at all since most cases are very benign –In fact many doctors dont bother treating them as long as pain is not a factor —-orthotics are a big help –the collagen overgrowth in scleroderma is far far different than this localized fibrosis which is more closely related to DuPruytens [sp]–
richie

[richie]

Hi Arent you the person who went to Dr F in the state of Washington —I find it interesting that tests were ordered to create baselines –All these so-called experts in scleroderma take the same approach -baselines –this is why I decided against an experimental study at Howard Wood Johnson in NJ 15 years ago in favor of DR T up at Harvard —
IN my opinion they set up baselines to measure a persons decline -because even today 15 years later -the so called big guys still have nothing to effectively treat the overall disease -The tragedy is -to a person they refuse to acknowledge that minocycline can help in many many cases —THe doctor you went to -=ran a big study at UCLA a few years ago -I think it was cyclosporine –results far from good no matter what spin was put on it –A few years ago I emailed him –and DR W at Hopkins –offering my personal casenotes as well as info from my local internist who now gladly writes my minocin rxs after DR T retired —I only go to my local internist now as I dont need any rheumatological help at all —-Incidentally now I think the latest rage is cellcept —I have seen lots of these so-called advances over the years and really dont see anything different from 15 years ago —Some different faces -some new faces -same old tired rhetoric —
Richie

[Amle]

Dear Richie, thanks for your replies, but now I feel sorry I asked. Obviously this is just an odd thing I am having to deal with. I believe in AP. I am so glad to hear how well you are doing and others. That gives me a lot of hope at a time when I need it.

[sunny22]

Aime, i have the same issue but in my hands. I have lyme and cos and sd ( systemic). I definitely had ledderhose nodules in my soles but i noticed after 6 mos of lyme treatment, i can walk a little better as the nods seem smaller and less painful. But my palms have only gotten worse. I went to an ortho (hand specialist) a few month back to determine if my two waxy bent fingers on one hand ( not bent to huge degrees but can not straighten as they are severely painful) and the awful nodules in both palms ( very painful to touch and getting more pronounced) were from SD or Depuytrens. She said she wasnt sure as deputrens should not be painful. She said they could operate to straighten fingers and remove palm nodules along the tendons. She said the finger surgery was a very painful procedure and no guarantees. I think i can handle the fingers but tne nodules interfer w everything i touch. If they continue to grow i will have to do something about them. The interesting thing is that after 6-8 months of intense lyme therapy, my ana and SCL-70 went negative! ( i still wonder if thats possible so i will have it rechecked at my next llmd appt) Yet i still have the SD symptoms but maybe they will subside. Just hoping the lyme and cos would go. But i only found out about the lyme a year ago and had been infected for decades. My sd dx came before the lyme dx. Btw, I went out to Riverside too! I hope you can get answers on the ledderhose. (Forgive my typing, hands arent the best). Wishing improved health to you! Syunny

[Amle]

Sunny, thanks so much for your reply! I am so sorry to hear how much your hands are hurting. I am thankful to hear that you had some improvement in your feet with your lyme treatment. My nodules really hurt too, which I know is not typical of ledderhose. The foot surgery can be debilitating so I am hopeful that whatever my course of treatment is in Riverside helps because I don’t want the surgery. I think I read that DMSO? cream has helped some people. I may not have that abbreviation right. Have you tried it? Amy

[Trudi]

Here is some information that may be of help:

Dupuytren

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[sunny22]

Thanks for your replies. Amy, i havent tried dmso. My gp had some kind of compound made torub intomy hands but it waslike glue so i couldnt use it. They tried again to improve the consitentcy to make it more emollient, but failed. Ill have to see what the ingredients were. Re my case, the bent fingers are bent from the first two knuckles, not the main knucle. Therefore SD would appear to be the cause of those finger issues because they are not being pulled down from the palm tendons. But the awful hard painful on touch nodules along the palm tendons are perplexing. I have needed a padding around my steering wheel for the last couple years because i was driving with only my fingertips ( it is too painful to grab on to anything hard like a knife fore cooking , etc). I wonder if anyone has had the surgery to remove these nodules either in the feet or hands? And i wonder if other’s nods had continued to grow? When i had 23 and me done, one of my mutations said possible depuytrens. But interesting that no one in the family remembers anyone now or who has passed before to have had this.
Oh, and im not familiar w/ skki, i will google it…
Thanks again,
Sunny

[richie]

Hi A good test is -is your skin tight on your hands –if your hands are shiny and you cant pull the skin from back of your hand –then you have skin tightening which will cause your fingers to curl —
r

[Amle]

Trudi, thanks for the post. I also don’t know what SSKI is.

Sunny I messaged you. Amy

[Trudi]

@Amle wrote:

I also don’t know what SSKI is.

Iodine (specifically potassium iodide). It is explained in the article.

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Amle]

Trudi,
Thanks so much, again. I did read through the article. I think there is a lot of good information. I am constantly amazed by how much I just don’t know. I am so close to the tahoma clinic. I have always thought maybe I should just get in there…
Amy

[sunny22]

Trudi,
I’d like to thank you also for the link! Lots of excelent information. I will share this with others. I am going to talk to my compounder to see if he can make the cream to rub into my palms and feet. If tried canabadiol oil rubbed into my hands and feet suggested by llmd but i didnt find it worked for me. Thanks for this info on Sski.
Sunny

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