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Hyaluronidase injection
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04/08/14 13:14
wach 

Administrator

04/08/14 13:14
wach 

Administrator

Re: Hyaluronidase injection

Please note that this is not an established treatment and no information about long-term results is available. 35 years ago a French paper was published http://www.ncbi.nlm.nih.gov/pubmed/11496377 but it is not avilable anymore and I doubt whether it included any long term results.

Wolfgang

shmiddo:
Is there any more info available on this treatment? ie side effects, how effective it is, longevity Did Dr Davis make any comments on past patients? Are there any other doctors using this treatment?

Appreciate any help as I am considering getting this treatment.

04/08/14 13:17
Penny 
04/08/14 13:17
Penny 
Re: Hyaluronidase injection

I couldn't find much more information about it and that is why I waited almost 2 years. However, in my case my feet were "pulling up" just like my hands are and the pain was really unbearable. I really thought I had something more than just Ledderhose going on. All I can tell you is what Dr Davis told me. He has been doing this for years and has had really good results as he says "it works". His patients get relief and the results seem to be long lasting. Wish I could tell you more. My feet were better the next day, unbelievably better. They are continuing to "loosen" and the thick feeling is getting less, even looking at them you can see the difference. There is less "bunching"up. I do have more nodules in the balls of my feet which are quite pronounced and I am putting a topical on to try to shrink them. If they don't shrink I may consider shots in them as well if Dr. Davis will do it. The consequence might be more far-reaching because the surrounding tissue is different than in the arch of my feet. Hope that helps.
Penny

04/09/14 00:59
GaryBall 
04/09/14 00:59
GaryBall 
Re: Hyaluronidase injection

Penny:
I couldn't find much more information about it and that is why I waited almost 2 years. However, in my case my feet were "pulling up" just like my hands are and the pain was really unbearable. I really thought I had something more than just Ledderhose going on. All I can tell you is what Dr Davis told me. He has been doing this for years and has had really good results as he says "it works". His patients get relief and the results seem to be long lasting. Wish I could tell you more. My feet were better the next day, unbelievably better. They are continuing to "loosen" and the thick feeling is getting less, even looking at them you can see the difference. There is less "bunching"up. I do have more nodules in the balls of my feet which are quite pronounced and I am putting a topical on to try to shrink them. If they don't shrink I may consider shots in them as well if Dr. Davis will do it. The consequence might be more far-reaching because the surrounding tissue is different than in the arch of my feet. Hope that helps.
Penny


Really pleased this is working for you Penny....the nodules on the the balls of your feet....we're they there prior to the treatment?.....is there any sign of progression elsewhere......including your hands?

I must say the interview on Gary's blog is fairly comprehensive...dr. Davis sounds very confident of this treatment....I would like to hear about the long term results so please keep the posts coming...

Wishing you continued success

Gazza

04/09/14 12:05
shmiddo 
04/09/14 12:05
shmiddo 
Re: Hyaluronidase injection

Thanks Penny. I appreciate your comments and hope for your sake there are no side effects. I realise it is hard to endorse something without approval from the drug company and health system for legal reasons. Hopefully more people who have had the treatment start commenting on their experiences.

04/10/14 13:52
Penny 
04/10/14 13:52
Penny 
Re: Hyaluronidase injection

When I said I had more nodules, I meant in addition to the ones in the arch of my foot which were treated. Not meaning additional nodules --not more than I had had previously. I had the nodules in the balls of my feet even when I went to Germany, though they perhaps have gotten harder. Even though the "thick" feeling is less, I can still feel the nodules in the balls of my feet, sometimes pronounced than at other times (which makes no sense to me). My disease is progressing in my hands as well but with the splinting it is going more slowly.

04/26/14 02:15
shmiddo 
04/26/14 02:15
shmiddo 
Re: Hyaluronidase injection

any more updates on your treatment penny? Are you getting another injection?

04/29/14 14:04
Penny 
04/29/14 14:04
Penny 
Re: Hyaluronidase injection

I wish I could give you and answer as to long-term, I guess we all wish we had that. However, I never know how much to chalk-up to the activity of the disease itself and the reaction to external things. I know my disease is active right now. My right hand has 2 more nodules since the surgery, and they are getting harder. I really just don't know. My feet progressed quickly in the beginning and it really changed my lifestyle very quickly. In the week of the 2nd round of radiation I went from being able to walk all over Hamburg to sitting in the hotel room and having a difficult time in the airports trying to get home. Then the next year just struggling to walk more than a short time. I am now concerned that my feet will progress again from the disease itself with or without treatment. So right now my feet are better than they were when I got the shots, but not continuing to improve as much as I had hoped and I am beginning to wonder if they are regressing. The question remains where would they be if I had not had the shot? Obviously worse as they are still better than before, so I have no real answers. I will probably go see Dr. Davis again in a couple of months...as I am not able to go before then. I have postponed using the orthotics which I got because I was not able to get back to his clinic to get them adjusted in the right time frame. But I am planning on trying them then I can and see if that helps put the pressure on different spots.
I am not sorry I got the shots because they have given me at least this time and hopefully more time with less pain and more ability to walk longer but like every other treatment they are not the cure. We need to find the cause not treat the condition. I did read an article that I thought was interesting, not at all linked to this but thought it might apply. I am going to post this on the main forum as well, just to get feed back from others.

http://nocamels.com/2013/07/new-israeli-...ng-or-scarring/
Penny

05/03/14 05:45
nanshands 
05/03/14 05:45
nanshands 
Re: Hyaluronidase injection

Thanks Penny, for your continued updates to all. Know it isn't easy in what to say as to success or not. But, hey, seems to me like we are all in that boat as each person attempts to do their best by this disease. And all with varying success or not. So, just keep on posting from time to time, the good and the bad.

Glad you are still doing better than before, that's huge with this disease! Hope there is no further regression.

Nan

06/25/14 17:43
Jeanie 
06/25/14 17:43
Jeanie 
Re: Hyaluronidase injection

So I have now completed three rounds of the H. injections. I do believe if I had not had two unsuccessful Tenex procedures done on my fibroma, I would have had even better results. Tenex looked like a great solution and so many places were claiming huge success. It only aggravated my situation and the fibroma grew very large and I was unable to walk on my left foot or wear just about any shoe. Including the Tenex procedure, I have had 13 needles stuck in the arch of my foot since January of this year. I'm kind of done for now!

After the first injection, I had very much the same experience that Penny did. It was AMAZING! I didn't limp when getting out of bed in the morning and my pain decreased by about 50%. The nodule was so large, that I didn't expect much of a reduction, but probably 25% or so.

The second injection was three weeks later. I got pain relief that brought me to about 75% of where I was originally. The fibroma decreased in size once again.

The third injection was about four weeks ago. My fibroma is certainly not "gone," but it is small now. Unfortunately, it appeared to wrap around the fascia and there was a part of it that could not be accessed by the needle. I would say it is about 85% to 90% better though. There is still a small amount of pain, but not enough to go back for a fourth shot and the fibroma would be hard to fill with the solution now as it is rather small.

Shortly after the LD started in my foot, I also developed Neuropathy. It is in both feet and my hands now. At first I thought it was LD and DD, but the symptoms were more nerve related so I saw a Neurologist and that was my diagnosis. I'm not sure if one causes the other, but it would make some sense that nerve damage could occur.

Anyway, I would absolutely do these injections again. I would also do them as a first line of treatment if conservative measures didn't work. Dr. Davis was very helpful and gave his protocol to my doctor so that I didn't have to travel to TX three times. I could never have managed the airports back then. The key is to find a doctor open enough to be willing to speak with Dr. Davis if TX is too far for you to travel. The shots themselves take about 5 minutes and cost about $100-$150 each. I hope this helps.

06/26/14 22:07
shmiddo 
06/26/14 22:07
shmiddo 
Re: Hyaluronidase injection

That's awesome Jeanie. Did you have RT before the injections? Did you notice any changes to the tissue surrounding the nodules? Was there much pain during or after the injections?

I have been in contact with Dr Davis and hope to get the treatment done. There doesn't seem to be any hard evidence as it involves using the drug off its patent so any comments you make on the forum are greatly appreciated.

Thanks :)

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