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• Question-Autoimmune and RP
• Posted: 2008-09-16 09:39:19 By Liz J
• Has anyone heard that potentially some RP is possibly in some cases from the autoimmune system attacking the eyes? Liz

• Posted: 2008-09-17 16:41:01 By Thomas P
• Liz....
  Could you expand on that subject?
  Any sources or links to go to?

• Posted: 2008-09-18 07:03:21 By Elizabeth J
• Actually if you enter in autoimmune in the search on this sight you will find an article by John Heckenlively on the situation. Apparently some people can have a situation where they have autoimmune situation where their immune system attacks their retinal cells and destroys them and you can also have a combination of both. If you have just autoimmune there is a treatment although I've heard has many side effects at least it has a treatment. If you have both RP gene defect and autoimmune they treat you for it too but that is why I'm asking.. not really sure.
  Liz

• Posted: 2008-09-18 15:00:42 By Thomas P
• Hi Liz....
  What specifically is this treatment?
  What do I have to do or take?

• Posted: 2008-09-19 09:37:16 By Elizabeth J
• Actually you have to be tested to see what is causing the retintis pigmentosa and if it is the autoimmune system then they have a treatment which is similar to the treatment you would receive for lupus. The likehood though is not common from what I have heard but a possibility. The good news is there are going to be lots of different treatments in the next 5 to 10 years so there is hope. I was tested for the autoimmune but my hopes are not up on it as the doctor was not thinking it was the cause but making sure it was not is all. Said if it was the autoimmune the treatment has lots of side effects and I did not ask what they were since I probably will not have the condition.

• Posted: 2008-09-19 12:02:36 By Thomas P
• Liz...
  5 to 10 years??
  Yikes.
  What if you don't have 5 to 10 years?
  
  For over 24 years now, I have constantly been told that a "cure" was ONLY 5 TO 10 YEARS AWAY.
  I am too old now to be fooled by this rehtoric,
  and quite frankly do not believe this any more.
  
  At age 54, and nearing the end of my historically
  genetic visual lifespan (x-linked/inherited)I don't have 5 to 10 years.
  
  I guess I'll just have to go totally blind until then.
  

• Posted: 2008-09-18 16:18:49 By Marisa P
• RP is genetic, but some feel that it is tied to an autoinmune problem which explains why some are affected earlier than others. In any event, if you do have an autoinmune problem it is likely to destroy more than your retina.
  
  Marisa