I was wondering if anyone has tried a holistic doctor for their Birdshot symptoms? I have been on and off Prednisone and Cellcept since 2003 and I have had it! Besides the weight gain, I feel so unhealthy and "toxic"! I recently took myself off Cellcept, but still take 10mg of Prednisone along with herbs and natural vitamins and antioxiant supplements to assist in maintaining a stable and quiet retina. I just started this treatment along with dietary changes. Anyone have luck with this kind of treatment????

I am on that same search for my husband. He has only been taking drugs for a few months and he recently came down with pneumonia because of his weakened immune system. Unfortunately, I have not had any luck so far in searching for alternative treatment, but if I do, I will definately respond and please do the same. :) There is answers out there. I have hope!

I'm sorry to hear of your husband's reaction to the medications. I am seeing a holistic doctor (Vitality Natural Healthcare Center, Emmaus, Pa.) www.thevitalitycenter.com I am very pleased with his very detailed wellness evaluation. He consulted a few other doctors (one who wrote the "bible" on natural medicines and supplements) and came up with a treatment plan for me. It has been only 3 weeks , but the dietary changes and supplements are working. I feel so much healthier (although I miss my coffee!!) and my eyes are "quiet". I am off the Cellcept, but I am still on Prednisone untill I see my Uveitis specialist next month. He said when you have an inflammatory autoimmune disease, you need to reduce the acid in your body. So I swithched to green tea and I need to limit carbs and sugar. Lots of colorful fruits and veggies. Only lean fish and poultry. So far, so good....I'll keep you posted and good luck!

Hi - I am very interested!! I'm on Cellcept and Cyclosporine since October according to Dr Foster's protocol - I see him every 3 months and local doctors in between who have agreed to follow his lead. Was on 60 mhs prednisone from July and have slowly slowly tapered down to 4mgs and heading for zero by June. I've been following the Eat To Live program by Dr Joel Fuhrman - a high nutrient plant based diet - it's quite strict - no animal or dairy products, no sugar, salty, oil, and I have included no wheat- for the first 6 weeks (I'm in week 5) and then a little more flexibility. I've found the diet to be great - I have no cravings and love what I eat. My tastes have changed - never gave up sugar before. I feel really good - no more fatigue from the meds - and getting down on the prednisone helps too - my face is deflating ;-). I am staying on the Cellcept/cyclospoine - was just told by Foster that I am in remission - hooray! He says to take the immunosuppresants for at least 2 years after remission to retrain immune system. I just began seeing an accupuncuture- Chinese medicine doctor. He doesn't believe in "auto-immune." He is treating my liver and spleen to be healthier with Chinese herbs and accupuncture - suspects it's the optical artery not getting sufficient blood. The herbs don't interfere and interact with the meds. I've only just begun with him this week. Will let you know how it goes. I'm very interested to hear how you both are doing. Stay connected and all the best! - Lauren

Lauren, Wow....lots to think about! I'm glad to hear of your progress!! I am confused about our disease! I am under the assumption that Birdshot never is totally in remission, that you always have it, and like all autoimmune diseases, it will be "quiet" for months to years, then you can have a "flareup". I have had this disease for 8 years now, and have successfully treated it with Prednisone when I had flareups (80 mg foe 2 weeks, then 60 mg, 40mg, then 20 for a month, then 10 then done!) This has worked well for years, but last year I had a long flareup, so I went on Cellcept and stayed on Prednisone. I really didn't notice a huge difference, except I felt very unhealthy, and I became even more swollen. I just stopped the Cellcept on my own, but stayed on the 10 mg. of Prednisone as I am adding the herbal supplements and vitamins. The main one that helps with the small capillaries of the retina is Bilberry. I take 6000 mg 3x/ day with meals.I really feel this is helping! Also vitamin A and, Ginko and lots of antioxidents. I know I should of stayed on Cellcept, but I felt my body was saying NO to it and the side effects for me where not healthy at all!

Thank you both for your information! You have given me a lot to go on. Good luck, and I will keep you updated on my husband's progress! :) Heather

Update - I've done 6 weeks on the Eat To Live diet - a book and diet/lifestyle by Dr Joel Fuhrman - feel good from that - after 6 weeks you can start introducing things back in which I look forward to doing. I stopped taking the chinese herbs because I wasn't feeling great - not sure if it was from them but I didn't want to risk it - probably a bug going around - my husband's been sick. Had a couple of accupuncture sessions with no noticeable change. Had an OCT at local ophthamologist and found some swelling in right eye. Went to my retina doc yesterday and had an injection of Avastin. I asked him if this meant I'm not in remission - he said it could very well be secondary - not directly caused by birdshot. This is somewhat confusing but in a nutshell - the leakage in the vessels causing the swelling could happen at my age (I'm 61) and may have happened this time only because of age and/or because vessels were weakened from birdshot previously - and so now leaking but not as direct result of birdshot. Hard to fully understand. I guess that's why they go train for so many years. I'd much rather have the injection than take oral prednisone. The shots do not hurt at all - a tiny bit sore afterwards - really nothing much - and my goal is to stay off prednisone even though I tolerated it well - I'm down to 3mgs from 60mgs and do not want to return to it. I feel SO MUCH better without it! Please keep us updated on any changes or discoveries that you have. The important thing to me is to prevent any further damage to my vision. I am so grateful that I can see - even if not as well as I once did - I can see and I so appreciate that every single day! All the very best to you all! Lauren not

Thanks Lauren! I tried shots in the early years of this disease, and it worked, but my right eye reacted to the shot by shrinking back too quikly and I have a wrinkle in that retina...poor vision out of my right eye! The doctors said I should not attempt it again, especially with my left eye...I need good eyesight out of that eye! I'm only 47 and I want to maintain my vision as long as I can. I'm so glad it worked for you! One of my doctors said they are starting to implant medications into the eye, which looks promising. Also stem cell research is looking promising for our condition as well ( maybe 10 years away) Lots to be hopeful about!! Take care, Leanne

My husband and I recently watched a documentry called "Fat, Sick, and Nearly Dead" and in this movie there are 2 men that cure thier "autoimmune disease" by doing a 60-day juice fast. Now my husband is trying it for himself in hopes to reverse his birdshot. So far it's only been a week, but I will keep you updated on his progress. Also, after doing a little research of my own I have found out that Organic Green Tea treatment on and in the eyes may be benificial as well. My husband hasn't tried it yet, but I will let you know how that goes as well. :} Thank You, Heather

Hi Heather - I heard about that documentary - want to see it. Please keep us posted as to how your hubby is doing. Thanks! BTW do you also read http://bsrc.lefora.com/ - it's a more active forum. I have been in remission since March with some CME - central macular edema that is not birdshot. I am off prednisone completely and still taking Cellcept and cyclosporine. I'm not having any side effects from them fortunately and they are working so the plan I'll stay on them for another year or so and if I remain in remission then will taper off. We'll see... And I do see quite well - altho no night driving. all the best, Lauren

Good morning, folks! I was just reading your posts and found your stories quite interesting. Lots of food for thought! I was diagnosed with Birdshot almost 2 years ago. (Looking back, I missed a lot of signs and should have been diagnosed sooner.) I see Dr. Dara Koozekalani at the University of Minnesota-Minneapolis Fairview Clinic Retina Center. He directs my care with the ophthalmologist and rheumatologist I see in my home state. I cannot take Prednisone due to side effects with my blood pressure. The same is true for Cyclosporine. I started with Azathioprine but, it caused liver issues. I was on CellCept for a year and a few months. I also had to take a beta-blocker for blood pressure issues (likely related to the CellCept). Recently, I stopped the CellCept and started Remicade infusions. Thus far, no side effects! I'll have my second infusion next week. No beta-blocker, either - my blood pressure is great! Your information about herbs and vitamins looks interesting, so I'll be checking it out. Good luck to you and I hope your treatments are working well! Judy

Hi Judy, I was diagnosed a year ago. I'm interested in how you make out on Remicade since I too have been having issues with medication, am currently on Cellcept only, and Remicade has been suggested. However, I am told Remicade infusions are an insurance issue since not approved for Birdshot. How did you get your insurance carrier to approve it? Please keep us posted about your progress with the treatments. Best of luck to you. EF

EF, My insurance required my complete records regarding my birdshot diagnosis and treatments, and a letter from my treating physician stating why he thought this medication was necessary for me. (I forgot to mention that I am also a steroid responder and can no longer tolerate the Kenalog shots for my eyes.) Their physician reviewed my records and determined that Remicade was a good option for me. On his recommendation, my insurance approved using Remicade for my treatment. After that, I had to establish an account with another company that handles specialty drugs. They arranged with a pharmacy to have the Remicade shipped to my local clinic for my infusions. The drug is incredibly expensive but, if it does the trick and I have fewer side effects, I'm totally on board. With one infusion behind me and no side effects thus far, I'm thrilled. I'll have my second infusion this Friday, August 26. I'm certainly hopeful that this is the answer for me as I had cataract surgery for both eyes over the last month and I would very much like to keep the vision I have now; blind spots and all. Good luck with your insurance and let me know if I can help with anything else. Judy

I was just diagnosed with Birdshot last week after being treated for what appeared to be only inflammation of the vitreous. Over the past year I have been on Prednisone off and on, and have used both Azathiaprine and Methotrexate without result. I continue to regress every time they wean me from the Prednisone. I just started Prednisone again, along with Cellcept. I am 61 years old.I had an eye issue in my 20s that "went away" when I got pregnant. Then in my 30s I had erythemanodosum or inflammation in my legs off and on for 4 years, and then it "went away". My retinologist and rheumatologist believe this is all related, and all autoimmune. I have been reading all your stories and wonder how things have gone for each of you. The latest post was 7 months ago and I'm interested in what results folks have seen with the holistic approaches and the diet changes. Any updates? Janie

EF, Thanks for your nice comments. As it turned out, the Remicade did absolutely nothing for my disease, allowing my immune system to build back up. I ended up going back on the CellCept and blood pressure medication. I also had to have Kenalog shots in both eyes again due to the inflammation. I'll find out how things are going in another couple of weeks. On a side note, has anyone had any type of psoriasis develop along with the birdshot? They may or may not be related, so I'm just curious. Have a wonderful day! Judy

Judy, Thanks so much for the update. Sorry the Remicade did not work for you. Never had psoriasis and wondering if it might be a side effect of your medications? After Avastin and Kenalog did not work for me, my doctor tried Triesence which worked like a charm. Only trouble is it lasted 6 weeks, then my inflammation returned, exploded, becoming much worse than it was before and made it obvious that Cellcept that I had been on for 1 ½ years (3000 mg) was not doing its job for me either, just causing side effects like the prednisone, but not working. Determined it was not good for me to have CME up and down so drastically. So we are in process of Retisert implants (can have their own undesirable side effects) on which I should be able to stop all medication. Had one a month ago, next one scheduled for next week. Hoping it will work like Triessense only should last 30 months instead of 6-8 weeks. Point is, never give up trying different things. Each of us is different. Have you tried a very active site, bsrc.lefora.com, a wonderful support group for us “birdshot-ers”?

Thanks, EF, for the info on the other site. Also, on the Retisert and Triessense, I hadn't heard of the second medication but do know someone using the Retisert. She sees Dr. Foster in Boston. I understand about the medication changes and tries as just being off my CellCept to treat any type of infection and my inflammation increases by leaps and bounds. Looks like CellCept and I will be friends for life. As for side effects, it remains to be seen whether the skin condition is a side effect or something else. I guess splotchy skin is better than a hole in the head, or any of a number of other options! In any case, I'll check out the other website - Thanks a bunch! Have a great week! Judy