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• Autoimmune Retinopathy
• Posted: 2011-03-08 11:27:41 By Melissa H
• Is there anyone here diagnosed with RP who has also been diagnosed with Automimmune Retinopathy? My specialist, after years of treating me for cystoid macular edema with no real results, sent me to see Dr. Heckenlively at the Kellogg Eye Center in Michigan. Apparently the edema is being cause by autoimmune disease which is sometimes seen in conjunction with RP. The treatment is pretty serious and I would like to find someone else who may have gone through the treatment - which involves prolonged use of steroids and immunosuppressants.
  
  Any information would be greatly appreciated!
  
  Thank you,
  Melissa

• Autoimmune Retinopathy
• Posted: 2011-03-24 11:11:24 By Elizabeth J
• Hi Melissa,
  
  I too go to Dr. Heckenlively and have been treated on the immunosuppression medications and prednisone and have for 2 years and 2 months for my AIR condition. I started the treatment Jan 2009 as I had many antibodies and had been rapidly losing my peripheral visual field. I just had a Western Blot done last Nov 2010 and have found out I am down to one little band of anitbodies which is quite impressive considering I had a huge amount of them when I first started going to the Kellogg Eye Center. So in my opinion it is worth taking the medications as I no longer have the decline in my vision and have actually improved slightly. As far as the medications I would warn there are side effects and so you have to take medications to offset them sometimes.. I take xanax for the nervousness but only as needed. I also have a reclast infusion and take Vitamin D and calcium as prednisone can damage the bones. I have had a bone density test taken and as a result of the reclast and vitamins have actually improved despite the prednisone. I also have to have a monthly test for my white blood count and kidney function but so far all is well. Thinking I will probably be actually getting off of them soon but wanted to let you know my thoughts. Liz

• Posted: 2011-03-24 11:14:35 By Elizabeth J
• Hi Melissa, Needed to add I also had been diagnosed with RP Simplex in the beginning. But truth is I was older when my vision started declining and was after an injury to the eye it started so who knows.

• Auto immune disease and RP
• Posted: 2011-06-11 13:18:16 By Marlene B
• Just saw a post about auto immune disease and RP
  like what kind of things? Systemic and well as occular. would really like to know more about this association.