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Coincidence? RT on one limb, disease activity stops on other limbs.
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05/01/2014 00:33
JohnG 
05/01/2014 00:33
JohnG 
Coincidence? RT on one limb, disease activity stops on other limbs.

A year ago I had RT on my left hand, and the progression of the disease halted straight away. Not just in the left hand, but also in my right, which was not treated even though it had active growth of nodules and feelings of itchiness at the time. Moreover, progression of the nodule in my foot also halted soon after RT on my left hand.

I know that the ionizing radiation has a direct effect only on the tissue it is exposed to. So it seems that the cessation of activity must be just a coincidence.

Any thoughts?

Edited 05/01/14 03:36

05/01/2014 01:30
callie 
05/01/2014 01:30
callie 
Re: Coincidence? RT on one limb, disease activity stops on other limbs.

It is most likely a coincidence similar to the Dupuytren's in my hand going dormant for 13 years (no RT). Similarly, the nodules in my arches went dormant about the same time. Then last year my dormant hand developed a nodule and I had RT. The nodule got worse after RT. This is an unpredictable disease and the treatments are equally unpredictable.

05/01/2014 21:32
JohnG 
05/01/2014 21:32
JohnG 
Re: Coincidence? RT on one limb, disease activity stops on other limbs.

I agree that it is likely that it is just a coincidence. But I can think of a speculative reason one might consider the possibility that it's not.

It's been mentioned that the disease often starts simultaneously in different parts of the body. This hints that the mechanism that triggers the disease might be systemic, in part, and not purely local. I don't think anybody knows what that systemic mechanism might be, or how it works.

So my speculation was that if the start of the disease can be triggered by something elsewhere in the body, why not the halting of it, as well?

05/01/2014 21:48
JohnG 
05/01/2014 21:48
JohnG 
Re: Coincidence? RT on one limb, disease activity stops on other limbs.

Warts are an example of a disorder on the hands and feet that can subside when they are treated elsewhere on the body.

Unlike Dupuytren's, warts have a well-known cause. The immune system isn't able to fight off a certain virus that we're constantly exposed to. If a doctor injects yeast into a wart in your foot, it can make that wart go away, and simultaneously warts on your hands go away as well. This is called yeast injection therapy. The effect on far away warts is thought to be a stimulation of the body's immune system. That way, treating a condition in one place actually has an effect elsewhere in the body.

I believe that Dupuytren's was also once thought to be an autoimmune disorder. I'm not sure if that idea still carries any weight, though.

05/02/2014 01:50
Jolene 
05/02/2014 01:50
Jolene 
Re: Coincidence? RT on one limb, disease activity stops on other limbs.

Hello,
According to my Rheumatologist DD & LD are not an autoimmune disorder / disease.

05/02/2014 22:35
nanshands 
05/02/2014 22:35
nanshands 
Re: Coincidence? RT on one limb, disease activity stops on other limbs.

John G

Actually there is truth in what you experienced. Prof. S told me that it would be interesting to see what happens in my left hand (the untreated hand) after RT to the right. I later sent him an email to make sure I understood what his comment was implying, and was told that "sometimes the disease stops after the RT of the involved hand, but there is no warranty." (guarantees)

Why that can happen and does he did not explain. Maybe he doesn't know. But, my untreated hand, symptom wise improved immediately after RT to right hand. No coincidence! It also stopped progression in that hand. One very good reason for not over treating!

Just as interesting, and non-coincidental, became after the second round of RT to the right hand, the disease, that had improved immensely in both hands after the first round, flared up again in both hands. For several weeks I was in a lot of pain. Making me wish I had never done the second round! It was as if the disease had gone away and then came back with a vengeance. Things are better now, 6 weeks out from round 2, but far from being back to the improvement level I had after round one.

What I have concluded from all of this so far is: Do RT to the most involved extremity first and see what happens. Do RT when you are having symptoms. Be careful as to how much RT you do. Period. And, remember though RT is not as invasive as surgery or other forms of treatment, it IS an attack on this disease and it CAN make it angry.

Oh, also interesting, I have Ledderhose in both feet. Symptomatic now for 10 months, progressing very slowly. Was having lots of pain and discomfort. Was told by Prof. S both trips that my feet were not ready for RT, though again, very symptomatic at the time. About 3 weeks after my second round of RT the pain level has decreased. Unless I start to grow huge fibromas, associated with unbearable symptoms, I do not intend to ever even consider RT to my feet. I will live with the discomfort, hope and pray for the disease to continue to improve, and hopefully go dormant.

Nan

Edited 05/03/14 01:40

05/05/2014 21:07
JohnG 
05/05/2014 21:07
JohnG 
Re: Coincidence? RT on one limb, disease activity stops on other limbs.

That's interesting, Nan. Thanks for telling us.

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