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Any advice welcome
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03/13/2013 08:38
spanishbuddha 

Administrator

03/13/2013 08:38
spanishbuddha 

Administrator

Re: Any advice welcome

If you read through the forum there are quite a few stories of success with RT. The link to the personal experiences page I previously listed includes a link to a website created by a UK patient who went to Germany. There are also a few minority apparent failures.

RT will not straighten any existing contracture, but has the potential to slow down active progression. Some report that existing nodules soften and even shrink. So to be effective there needs to be signs that the disease is presently active and progressing.

The treatment is approved by NICE in the UK but the are almost no hospitals or clinics providing it on the NHS.

I had it done on one hand in Germany, and the condition has continued to progress, more nodules and skin changes. But no contracture. The dilemma is that for many people contracture will not occur anyway, or may take many years, so it's difficult to judge if RT is working or the disease is just taking its normal slow course. My other hand now has problems and I have to make the same decision, try RT again or just wait. I'm monitoring it like crazy, almost paranoid, but waiting.

03/13/2013 20:28
Mrbigstu 
03/13/2013 20:28
Mrbigstu 
Re: Any advice welcome

Sorry to hear that.How long ago was it that you first had treatment on your hand?I tend to be a very indecisive person at the best of times,it's really difficult to make a choice either way.Sometimes surgery seems to outlast the injections,sometimes not.The more I think about it tho,I'm thinking more about surgery for myself.Driving me nuts.

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