So another interview with another Dupuytren’s / Ledderhose
patient who has had radiotherapy. They didn’t have quite the same success as
the other person I spoke to but here is the interview with SpanishBuddha from
the Dupuytren’s forum:
1) Do you have Ledderhose Disease, Dupuytren’s disease or
both?
Confirmed Dupuytren's in both hands.
Chronic Plantar Fasciitis in one foot and a thickening of the Plantar in the other. Both are potential indicators of, or can progress on to Ledderhose.
2) Do you have a family history of the disease? If yes how prevalent is it?
Don't know / not that I am aware of.
3) How long have you been symptomatic?
Three years to my knowledge. One of the difficulties with Dupuytren's is that people don't recognise the symptoms. However I'm aware of having Knuckle Pads since my mid-twenties.
4) What treatments have you received?
Radiotherapy of one hand.
5) How successful were these treatments?
Indeterminate... In my case there has been no change in the condition, so the nodules and cords have not decreased in size and my hand is still sore to use. However so far there is no sign of contracture so I am pleased with that. Of course there may have been no contracture anyway in this time without the treatment. Also no new nodules have developed, so maybe I just need to be more patient as its one year since the first round of the treatment.
6) You said you had radiation treatment, what was this experience like?
I was treated very well by the clinic in Hamburg. It was a positive experience and despite the lack of clear results in my own case I would consider doing it again for the other hand. They have a fixed protocol for this, 3Gy dose done five times over five consecutive days, then repeated 6 - 12 weeks later. They charge approximately €500 for each treatment of 5 x3Gy. Additional costs were travel, lodging and staying in Hamburg for a total of two weeks. Each daily treatment takes about 1 minute!
7) Are you currently satisfied with the treatment that you have received?
I am partly disappointed with the result of having Radiotherapy, as many people talk of the condition going into remission so that nodules shrink and symptoms die down, this has not happened in my case. I am positive about doing something though rather than just waiting for the next stage of contracture to occur.
Confirmed Dupuytren's in both hands.
Chronic Plantar Fasciitis in one foot and a thickening of the Plantar in the other. Both are potential indicators of, or can progress on to Ledderhose.
2) Do you have a family history of the disease? If yes how prevalent is it?
Don't know / not that I am aware of.
3) How long have you been symptomatic?
Three years to my knowledge. One of the difficulties with Dupuytren's is that people don't recognise the symptoms. However I'm aware of having Knuckle Pads since my mid-twenties.
4) What treatments have you received?
Radiotherapy of one hand.
5) How successful were these treatments?
Indeterminate... In my case there has been no change in the condition, so the nodules and cords have not decreased in size and my hand is still sore to use. However so far there is no sign of contracture so I am pleased with that. Of course there may have been no contracture anyway in this time without the treatment. Also no new nodules have developed, so maybe I just need to be more patient as its one year since the first round of the treatment.
6) You said you had radiation treatment, what was this experience like?
I was treated very well by the clinic in Hamburg. It was a positive experience and despite the lack of clear results in my own case I would consider doing it again for the other hand. They have a fixed protocol for this, 3Gy dose done five times over five consecutive days, then repeated 6 - 12 weeks later. They charge approximately €500 for each treatment of 5 x3Gy. Additional costs were travel, lodging and staying in Hamburg for a total of two weeks. Each daily treatment takes about 1 minute!
7) Are you currently satisfied with the treatment that you have received?
I am partly disappointed with the result of having Radiotherapy, as many people talk of the condition going into remission so that nodules shrink and symptoms die down, this has not happened in my case. I am positive about doing something though rather than just waiting for the next stage of contracture to occur.
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