Greetings, Had my first infusion yesterday. Wondering how long before vision symptoms recede? The steroid injection took 8 weeks to clear vision in my right eye. Now my left is getting very "pond waster" like, and right eye is getting symptoms back. I would like to wait for the Remicade to work and avoid the steroid injection, but would prefer not to have two bad eyes at once. Thanks for any help! Lori

I was told to expect changes in two weeks. Seven days after my first infusion I noticed a dramatic clearing and after 14 days I was driving again. Remember, though, that we are all different and react differently.Only you can decide if you can wait a week or two God bless.

I've been on a combination of Remicade and Cellcept for a year and 5 months now. I was also on Prednisone for about 7 months of that time. With Cellcept and Prednisone alone, my vision kept regressing every week. We added Remicade and it was a couple of weeks before my vision started clearing up. I have now been off Prednisone for about 10 months and have been 'quiet and stable' for about 9 months. My vision is good, even at night. I am 20/30 in both eyes. About 4 days before my infusion, I begin to see a few very faint floaters. As soon as I receive my infusion, they are gone. Remicade is truly my miracle drug and I have had no side effects. Janie

Hello, Thank you for sharing your experience. I'm kind of out here without a strong network. My Rheum and Retina Doc's haven't been able to tell me much of anything. Other than shoulder shrugs and "maybe 3-4 months??". I realize it's rare, but not comforting to be the one facing the consequences of this disease. Alas, I'm on Remicade and Methotrexate. Prior I was on Cellcept and Cyclosporine. That combination put me into severe fatigue and brain fog. After 5 weeks I asked the Rheum if it goes away or if there is some vitamin etc that could be deficient, or treatment I could take to help with daily functioning. More shoulder shrugging was the response. Blood work didn't show anything but an elicited CPK level. Do you think Cellcept would be better in combination with Remicade than the Methotrexate? Just curious Thanks again, Lori

It is very frustrating to have a life-changing illness about which little is known! We must advocate for ourselves and research all info and find doctors who will respect our research and agree to try our wishes. Somewhere along the line I read that methotrexate had not proved effective enough on Birdshot. Perhaps someone else can elaborate on that. Dr. Foster kept me on CellCept when the Cyclosporine failed and added Remicade with great success. My body is tolerating both without major consequences and in spite of some permanent distortion my vision is fabulous. I would suggest you get off methotrexate and add CellCept but do some research before discussing more with your doctor. Good luck and God bless.

Thanks Nana, I traveled to Boston to see Dr. Foster in Feb. and have been following up with him, to try and assist myself as well as my local Doc.'s in WI. I will ask Dr. foster about this. Enjoy the day, Lori

Metholtrexate was a drug used many years ago, and sometimes still used when other drugs do not work. Each person is different, there is no single "best" treatment for birdshot. The preferred treatment for starting is Dr. Foster's "cocktail" of cellcept and cyclosporine, however, depending upon your condition and medical history, this may not be an appropriate treatment to begin. There are other treatment options such as Remicade, which are being used successfully. Last month, during the www.birdshot.info monthly conference call http://www.birdshot.info/discussion/61/2014-conference-dates#Item_2 the topic was Remicade. I was surprised to learn of the high rate of allergic reactions. If not taking oral or IV benedryl, you may wish to ask your physician about that. D

I take premeds one hour before each infusion - 500mg acetaminophen and 50mg Benedryl. It works for me; I've had no allergic reactions and no side effects. I've been on Remicade with Cellcept since November 2012. It truly is my miracle drug! Janie

Interesting that you are taking acetaminophen rather than ibuprofen. The doctor knows best, however, its good to be aware that it is very easy to overdose on acetaminophen because its hidden in so many over the counter drugs and often physicians recommend not using acetaminophen because it contributes to liver toxicity, whereas cyclosporin does not damage the liver but contributes to kidney toxicity and high blood pressure. I am still learning about Remicade, I thought it was broken down in the liver, and according to the Remicade medication guide, there is a potential for liver toxicity. My caution as is with everyone taking acetaminophen, look carefully at all the ingredients in various over the counter medications, its quite staggering where it lurks!! I became aware of this recently when my rheumatologist told me about a patient of hers, they could not figure out why her liver panels were falling, and finally had the patient bring in everything in her medicine cabinet and only then discovered the patient was inadvertently overdosing on Tylenol between alka-seltzer plus, Vicks Day Quil, benedryl allergy, midol, etc. The FDA site about discussion of acetaminophen: http://www.fda.gov/safety/medwatch/safetyinformation/safetyalertsforhumanmedicalproducts/ucm381650.htm Good place to look up OTC: http://www.drugs.com/ingredient/acetaminophen.html

Hi Janie; A few questions: 1. Are you still on Remicade? 2. If yes, how far apart are the infusions? 3. What is the plan for tapering, e.g., do you get off cellcept first then step down the remicade, step down the remicade then teh cellcept? Appreciate your info. D

I am still on Remicade. I have been stable and quiet now for almost a year. My infusions are 400 ML every 8 weeks and I am taking 3 g of Cellcept per day. The plan is to maintain this regime for an as yet undetermined time, and then start tapering down the Cellcept. When I was just on Cellcept and Prednisone I kept regressing. As soon as they added Remicade, my vision started improving and the inflammation started to recede. I was on Remicade for a little over 1 year before the retinal specialist said the imflammation was gone. At my last appointment the doctor set my next appointment for 3 months out. That's the longest period of time that I have not seen the doctor in 3 years. My vision is 20-30 in both eyes. I have no sensitivity to light, no fan blades, no loss of night vision. They won't say I am in remission though yet.

Is the Remicade prescribed for the birdshot or for arthitis? The Aetna website explicitly states it will not pay for Remicade for birdshot. thx D

I don't have arthritis. It is prescribed for the birdshot. I have Kaiser and Kaiser prescribes whatever is necessary. I do not pay anything for my infusions; they are fully covered by my health care.