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Ledderhose treatment successful but expensive
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09/12/2023 16:06
MichaelRay 
09/12/2023 16:06
MichaelRay 
Ledderhose treatment successful but expensive

First, I have been getting Ultrasound guided Vitrase injections on multiple fibromas on the bottoms of both my feet since 2019.

Secondly, my left has more than 5 nodules and right foot has more than 10. They vary in size being very small to very large string lumped together. When one becomes painful to walk on, I get the one(s) causing the pain injected.

Additionally, the injections are spread out every 3 weeks, for approximately 4 times. This is expensive because the insurance covers the visits but does not cover the off use label of Vitrase. In 2023 the Vitase price has gone up to $350 per 2 vial box. Each visit averages 1 vial, which usually treats a couple of large nodules.

However, when I first started in 2019, multiple nodules used up 2 vials per visit. So now at the first sign of pain I get the one or two treated asap. I usually start having new growths pain within a few years.

Finally, this blog, I believe, is where I found the information about a doctor in Texas that did this procedure. When I called his office, they gave me a list of 30 podiatrist nationwide, he trained. I avoided flying to texas and found one Az podiatrist he trained nearby. Hope this helps anyone who has this condition. Surgery seems to create more scar tissue which these fibromas mainly consist of.
Thank You

Edited 09/12/2023 20:55

09/12/2023 19:26
spanishbuddha 

Administrator

09/12/2023 19:26
spanishbuddha 

Administrator

Re: Ledderhose treatment successful but expensive

Thanks for sharing your results and info. Latest chat on the related FB groups indicates that Vitrase (brand) is no longer available except for existing stocks, and patients are seeking alternative sources for hyaluronidase. Do you know more about this?

09/12/2023 19:48
MichaelRay 
09/12/2023 19:48
MichaelRay 
Re: Ledderhose treatment successful but expensive

Never heard of this. The only change, is the cost in 2023 increased significantly (1.2 ml = $175). I reckon I will find out about the shortage when it's time to order more. Thanks for letting me know in advance.
Also, I'd like to know the facebook group you are referring.
Thank You.

09/12/2023 20:01
spanishbuddha 

Administrator

09/12/2023 20:01
spanishbuddha 

Administrator

Re: Ledderhose treatment successful but expensive

MichaelRay:
Never heard of this. The only change, is the cost in 2023 increased significantly (1.2 ml = $175). I reckon I will find out about the shortage when it's time to order more. Thanks for letting me know in advance.
Also, I'd like to know the facebook group you are referring.
Thank You.
It's the group run by Dr Eddie Davis who promotes this treatment. Search on Ledderhose Disease or plantar fibromatosis support group.

09/12/2023 21:35
MichaelRay 
09/12/2023 21:35
MichaelRay 
Re: Ledderhose treatment successful but expensive

I will follow-up around mid October about the Vitrase.
Thank you very much.

09/13/2023 00:29
Lumpzzz 
09/13/2023 00:29
Lumpzzz 

Re: Ledderhose treatment successful but expensive

Xiaflex also was removed from the manufactures several months ago. Only what’s left in the market is available. I swear by it. It is the only treatment that opened my frozen fist up after an idiot hand specialist surgeon who’s surgery took a pinky finger with a slight bend and the results reactivated the disease and all my fingers curled up in a fist. I thought we all new that.. this hand surgeon I have no words…he dropped me like a hot potato and said he was done nothing more he could do…left me with the frozen fist like bye bye… no follow up care or referrals.

Xiaflex is painful I’m not gonna sugar coat it and not a pleasant experience. A week of swelling up to my shoulder. And pain. Then the doctor opened all my fingers thru office visit simply by pulling them open. This was while xiaflex was still in research mode. I was happy to have the use of my dominant right hand again. I always wondered why there were no studies using xiaflex for LD or frozen shoulder. Any one know why?

Today advertisements are on tv for treatment for DC. Nothing has changed with these treatments by hand surgeon for patience in years. It is still big money to lasso patience in for treatments that may or may not have satisfactory results.

I’m gonna stop here … because I may say things to get kicked off this site. Nothing against this site rules. But honestly… Nothing has changed in the past 15-20 years…. there is a standstill for treating fibrosis-nodules on cords ,hands, LD and Frozen Shoulder .

Best advice before agreeing to any treatment. Become your own advocate and research research research.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4292260

Edited 09/13/2023 02:37

09/13/2023 06:01
spanishbuddha 

Administrator

09/13/2023 06:01
spanishbuddha 

Administrator

Re: Ledderhose treatment successful but expensive

I think Xiaflex is still available in the US? It was withdrawn from Europe, Canada, Australia/Nz and Asia.

09/13/2023 10:22
spanishbuddha 

Administrator

09/13/2023 10:22
spanishbuddha 

Administrator

Re: Ledderhose treatment successful but expensive

There were trials of Xiaflex for frozen shoulder. The results were not good enough see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7360415/

There have also been trials for PD and maybe for LD (not so sure on these though) and also for cellulite. I would need to dig a bit more to find the reports.

09/13/2023 10:31
wach 

Administrator

09/13/2023 10:31
wach 

Administrator

Re: Ledderhose treatment successful but expensive

To my knowledge they didn't pursue Xiaflex for Ledderhose and never applied for it for Ledderhose at the FDA. For LD it can only be used off label but it doesn't seem to be very effective. It can be used to treat Peyronie's though. And I believe Xiaflex continues to be available in the USA, not in Europe.

Edited 09/13/2023 12:34

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