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Birdshot Chorioretinopathy

What is Birdshot Chorioretinopathy?

Birdshot Chorioretinopathy is a rare progressive condition characterized by vitritis (inflammation) and multiple ovoid spots, which are typically orange in colour and hypopigmented, in the eye. Patients with Birdshot Chorioretinopathy may experience gradual blurring of vision, nyctalopia (trouble seeing at night), floaters, disturbance of colour vision, glare, photophobia, and decreased peripheral vision. Birdshot Chorioretinopathy may eventually lead to complete vision loss.


Birdshot Chorioretinopathy is a rare progressive condition characterized by vitritis (inflammation) and multiple ovoid spots, which are typically orange in colour and hypopigmented, in the eye. Patients with Birdshot Chorioretinopathy may experience gradual blurring of vision, nyctalopia (trouble seeing at night), floaters, disturbance of colour vision, glare, photophobia, and decreased peripheral vision. Birdshot Chorioretinopathy may eventually lead to complete vision loss.

Acknowledgement of Birdshot Chorioretinopathy has not been added yet.

Birdshot Chorioretinopathy affects between 0.6 and 1.5 percent of the population. The disease is more common in North European descents with a female preponderance which is 1 in 2000. It accounts for 6%-8% of cases of posterior uveitis. Prevalence in US is 1 in 200,000.  In North Carolina, it is estimated to be 1 in 700,000. The condition typically occurs in the Caucasian population aged 35-70 years, with the average age of diagnosis at 50 years.

Synonyms for Birdshot Chorioretinopathy has not been added yet.

The cause for Birdshot Chorioretinopathy has not been confirmed; however, it is believed that the condition is related to inherited retinal autoimmunity dysfunction. There is a strong link of the condition to the presence of the human leukocyte antigen A29 (HLA-A29) molecule. Positivity for the HLA-B12 antigen may also be linked to Birdshot Chorioretinopathy, although this causation has not been confirmed.

There are several symptoms that affect patients with Birdshot Chorioretinopathy. Patients may present with complaints of severe nyctalopia or inability to see in dim light. Other reported presenting symptoms included glare, photopsia, photophobia or seeing flashes of light, fluctuating vision, decreased peripheral vision, decreased depth perception, and metamorphopsia. Metamorphopsia is a condition where straight lines appear curvy. 

Name Description
Decreased vision Decreased vision occurs in about 68% of patients
Floaters Floaters occur in about 29% of patients
Nyctalopia Nyctalopia occurs in about 15% of patients
Dyschromatopsia Dyschromatopsia occurs in about 12% of patients
Glare Glare occurs in about 19% of patients
Photopsia Photopsia occurs in about 17% of patients
Fluctuating vision Fluctuating vision occurs in about 7% of patients
Pain Aching pain in a tooth or in the area surrounding a tooth
Decreases depth of perception Decreases depth of perception occurs in about 5% of patients
Shimmering vision Shimmering vision occurs in about 3% of patients
Metamorphopsia Metamorphopsia occurs in about 3% of patients
Decreased peripheral vision Decreased peripheral vision occurs in about 3% of patients

The most common test for diagnosis of Birdshot Chorioretinopathy after examination in the eye clinic is the human leukocyte antigen (HLA) test. Electroretinograms which measure electrical responses by the various cells of the retina may also be carried out. Patients with Birdshot Chorioretinopathy will show diminished responses in the electroretinogram tests. Biopsies may be performed to verify diagnoses.

Diagnostic tests of Birdshot Chorioretinopathy has not been added yet

The appropriate level of treatment is determined by the severity of the inflammation. Conflicting reports exist regarding the efficacy of steroids. Some patients with mild inflammation may respond well to regional injection of steroids. Other patients require the use of systemic prednisone for control of the inflammation. Some patients may be controlled on less than 10 mg/d, while other patients require higher doses. Long-term treatment, even 10 mg/d of steroids, is undesirable, considering the high risk of significant morbidity and mortality of such treatment. Many patients show no significant response to steroid therapy. Cyclosporine has been shown to have a beneficial effect on Birdshot Chorioretinopathy inflammation in retrospective case series. Initial reports demonstrated improved visual acuity, decreased vitritis, and stabilization of eyes with cyclosporine dosages of 10 mg/kg/d. However, this dose also was associated with a high incidence of nephrotoxicity and hypertension. Vitale and colleagues reported a series of 19 cases of Birdshot Chorioretinopathy, which demonstrated that cyclosporine treatment with lower dosages, from 2.5-5 mg/kg, can be effective.7 This series showed control of vitreal inflammation in 88.5% of eyes and improved or stable visual acuity in 83.3% of eyes. However, the low incidence of drug toxicity was most striking; there were only 2 cases of hypertension and no cases of nephrotoxicity. One suggestion is to initially start cyclosporine dosages at 2.5 mg/kg and then to increase to the level necessary to control the inflammation, while ensuring avoidance of drug adverse effects. The maximum dosage is 5 mg/kg according to this author. Monitoring for blood counts and renal function is performed every 4-6 weeks, along with blood pressure monitoring. Cyclosporine serum levels are not followed at these dosing regimens. Other potential adverse effects, such as hirsutism, paresthesias, tremor, and gingival hyperplasia, are not risks for morbidity, but are mentioned, since lowering of drug dosage or discontinuation of the medication may be indicated if such adverse effects occur to a point of affecting the quality of the patient's life. One study reports the use of ketoconazole as adjunct therapy to cyclosporine. Ketoconazole delays metabolism of cyclosporine; hence, it may lower the dose of cyclosporine required to maintain control of inflammation. Silverstein and Wong demonstrated that cyclosporine trough levels could be maintained in a patient when the cyclosporine dosage was dropped from 200 mg/d (3 mg/kg) to 50 mg/d (0.75 mg/kg) with the addition of ketoconazole at 200 mg/d. This amounts to an 80% reduction of cyclosporine consumption. While this may be cost-saving, one cannot necessarily equate stabilization of cyclosporine serum levels with adequate control of inflammation nor with reduced potential toxicity. After all, the serum cyclosporine levels are still in the therapeutic range, and one might expect cyclosporine toxicity prevalence to be unchanged. Additionally, ketoconazole is not without potential adverse effects, especially the risk of hepatitis. Other immunomodulatory therapies have been described. Kiss and colleagues reported the use of mycophenolate mofetil, azathioprine, methotrexate, and daclizumab in a series of 28 patients with Birdshot Chorioretinopathy; however, the small size of the study precludes any comment on the efficacy of any single drug. LeHoang and colleagues reported the use of intravenous immunoglobulin in a series of 18 patients as initial therapy for active birdshot retinochoroidopathy, and they noted stable vision in 33 of 36 eyes over a mean follow-up period of 39 months.

Birdshot Chorioretinopathy is a chronic disease that is characterized by multiple exacerbations and remissions. Birdshot Chorioretinopathy tends to stabilize over a 3- to 4-year period, however, greater than one third of patients reach a visual acuity of 20/200 or worse. Visual loss is most commonly the result of cystoid macular edema and optic nerve atrophy. One series described deterioration on ERG and visual field or significant visual morbidity in 10 of 15 patients during follow-up. Of note, most patients in the series either had no treatment or treatment with steroids alone (ie, no immunomodulatory therapy). If uncontrolled, Birdshot Chorioretinopathy usually has a progressive course, with significant ocular morbidity as the consequences. Complications from Birdshot Chorioretinopathy include: 1.) Chronic cystoid macular edema – 50%; the most common cause of reduced central visual acuity 2.) Epiretinal membrane - 10% 3.) Macular pucker 4.) Choroidal neovascularization 5.) Peripapillary subretinal neovascularization - 6% 6.) Retinal neovascularization located on the optic disc 7.) Peripheral retinal neovascularization with capillary nonperfusion 8.) Optic nerve atrophy Other complications, such as cataract, glaucoma and rhegmatogenous retinal detachment can occur as well.

Tips or Suggestions of Birdshot Chorioretinopathy has not been added yet.
References of Birdshot Chorioretinopathy has not been added yet.
Community Status? Created by hazey
Last updated 2 May 2023, 05:33 AM

Posted by
2 May 2023, 05:33 AM

Jenna, I would love to hear how your treatment is going.  I am on trying to help my best friend who is just frozen with fear.  She just started steroid injections which have proven to be very painful for her.  Her vision is failing fast in her right eye and the doctor says that the other eye is not far behind.  We are desperately looking for treatment options.  We live in Seattle.

Posted by
9 Jun 2022, 12:28 AM

Well I have been recently diagnosed as well.  I have tried steoids for 8 weeks but they only recovered my vision.  There is still inflamation so I have to go on Immunosurpressants.   Happy to chat more about it. 

Posted by hazey
12 May 2022, 12:53 AM

View Full Thread (1 more posts)
Do Nothing? Created by
Last updated 9 Jun 2022, 01:00 AM

Posted by
9 Jun 2022, 01:00 AM

Has anyone had this disease and just done nothing?   Did you ever lose all of your vision or known someone who has 'gone blind'.  

BIRDSHOT CURED!!! Created by SCHunter
Last updated 31 May 2020, 07:30 AM

Posted by Andrea1954
31 May 2020, 07:30 AM

I must say I am surprised to see someone using the word "cure", when it comes to this disease, as I have been told there is no cure.  Perhaps they mean "remission", which is wonderful.  I hope it continues!

Posted by dagmara56
17 Oct 2013, 11:59 PM

I know Dr Foster very well, he's the best birdshot physician around. He has several patients in remission with birdshot. Dr. Foster put the best treatment plan together, the "cocktail" of cyclosporine and Cellcept. I founded and host a forum dedicated to birdshot since 1999. Every remission but one has been due to taking the medication and treatment and nothing to do with diet, exercise, etc.

Posted by NoCureYet
16 Oct 2013, 05:39 AM

SCHunter - can you respond with the treatment that your mother received form Dr. Foster. It may help some of us that have not been cured yet. Additionally, it might be helpful to add anything else that your mother changed about her life - diet, exercise, etc. Thank you, James

View Full Thread (1 more posts)
test Created by robert_RG
Last updated 27 Feb 2017, 12:31 AM

Drugs cost Created by chvalenzu
Last updated 21 Feb 2016, 07:00 PM

Posted by Tjreinoso
21 Feb 2016, 06:52 PM

Hi CHVALENZU -- My medical costs have not been an issue because of fortunate medical insurance. No idea about other countries. That said, I have refused my eye specialist's recommendations for prednisone and methotrexate - concerns over side effects. Between 8/2015 and 12/2015 my only treatment was acupuncture twice monthly and Chinese herbs. ERGs were stable during this time. January, 2016, I started 2mg (bedtime) Low Dose Naltrexone (LDN). Symptoms are now less than half. I recently increased the dose to 3mg. It''s an inexpensive old drug (generic and off label) with almost no side effects at low dose. No research for Birdshot but often used for MS, RA, etc. Check out for the LDN conference--12.5 hours of high level professional education for Cancers, autoimmune disorders, etc. TJ.

Posted by Tjreinoso
18 Feb 2016, 12:05 AM

Hi Wendy--This is not Anne. I'm TJ. Another "birdgirl" Love your name :) I'm not crazy about Facebook either, and had to have help finding the birdshot group there recently. Near the top right of the FaceBook home page there is a box for "groups" and that is the entrance. Once I got into groups and typed in birdshot I found it easily. It is a very active group! I have difficulty reading all the posts. Please post here again and I will try to help, although probably not the best person to ask. Best! TJ.

Posted by BIRDG1RL
17 Feb 2016, 05:54 PM

Hi, Annie, I've been trying to find the Birdshot Forum for months on Facebook. How do I get to it? Thanks, Wendy

View Full Thread (3 more posts)
cyclo/cept cocktail not working Created by BIRDG1RL
Last updated 15 Feb 2016, 10:14 PM

Posted by BIRDG1RL
15 Feb 2016, 10:14 PM

After 10 years of successfully taking Dr. Foster's Cellcept/Cyclosporine cocktail, I learned at my last visit that it no longer seems to be working. Dr. F upped my dose of Cellcept from 2 to 4 pills a day. If that doesn't work, next step is adding monthly Remicade infusions. Anyone else have the cocktail stop working? If so, what was prescribed next? Thanks, Wendy

inflammation diet Created by dbyriel
Last updated 14 Feb 2016, 01:50 PM

Posted by Bakersdoor
14 Feb 2016, 01:50 PM

There is some evidence that diet may help but no scientific proof. There can be no harm in trying to eat healthily, and cutting out inflammatory foods, but the chances are that you will need more than that to get Birdshot under control. More info about diets etc on the Birdshot Uveitis Society website at and on the facebook Birdshot group and Page.

Posted by Tjreinoso
5 Feb 2016, 04:19 AM

After being diagnosed with BSCR last year I also discovered an anti-inflammatory diet is strongly suggested. As it turned out I have been consuming an anti-inflammatory diet for decades. It is just one of many good health habits to consider along with good exercise, sleep, weight control, etc., etc., and I don't really think it will change the course, just be supportive. The only real dietary change I have made as a consequence has been to move to use of organic oils (olive, peanut). I don't like the quality/taste of the organics near as much, but did make that switch. I have had significant positive changes in the past two weeks since starting low dose naltrexone (LDN), having refused my ophthalmologist's recs for high dose prednisone and methotrexate.

Posted by chvalenzu
4 Feb 2016, 01:20 PM

Hi I tried with a paleolitic diet but I had to suspend, I´m going to start again this month, really needs effort to complete this diet, it´s very strict and if you want results you have to to take serious. This are some links. bye

View Full Thread (2 more posts)
Low dose naltrexone Created by Tjreinoso
Last updated 17 Nov 2015, 09:55 PM

Posted by Tjreinoso
17 Nov 2015, 09:55 PM

I was diagnosed with BSCR in July, 2015. I have refused treatment with prednisone and methotrexate. I am considering starting low dose naltrexone (LDN) and wonder if anyone has any experience with this approach. Thanks for your feedback!

Free Birdshot Conference Call Nov 13 Created by dagmara56
Last updated 3 Nov 2014, 05:46 PM

Posted by dagmara56
3 Nov 2014, 05:46 PM

November conference call: ADA, EAP, FLMA, SSSI and other confusing acronyms. For those in the US, what are your rights under the law? I am not an attorney, but will take you through the basics of what is covered, and not covered, by a disability. December call will cover birdshot testing. If you do not have the conference call number or time, please message me privately or request by emailing me at Hope to talk to you then

Community Resources
Title Description Date Link
Diagnosis and treatment overview for Doctors in the UK. 2007

This document, from Patient Plus, was published in 2007 and gives an overview of the diagnostic procedure and subsequent care a Birdshot patient may expect to receive in the UK.



The authors state that Birdshot is a progressive disease, that about 20% of patients will have a self limited course of this disease, and with few visual symptoms, require no treatment, while the rest will have chronic disease with periods of activity and remission. For the majority of patients, management of the disease is provided through cortisteroid (tablets and, if needed, injected into or around the eye) with cyclosporine or cytotoxic agents.


Birdshot Chorioretinopathy. Long term follow-up. Rasquin and Perelux. Belguim. 2004.

This paper describes a Birdshot patient followed clinically for 23 years. At presentation, in 1984, the patient’s vision was 20/20 in both eyes. The patient was initially treated with cortisteroid for a year with cyclosporine added at month nine and continued for two and a half years. At the end of this treatment, intraocular inflammation was controlled, but the patient had begun to experience kidney side effects from the cyclosporine and so treatment was stopped. There were mild episodes of inflammatory activity after treatment was ended, but systemic therapy was not restarted. By 1992, the patient’s visual acuity had reduced to 20/30 and 20/25, by 2001 colour vision was significantly affected and visual acuity was 20/60 and 20/40. The authors comment that there is lack of consensus about the drugs used in treatment and the duration of treatment, they state that vision drops late in the course of the disease, that retinal alterations and loss of retinal function progress despite minimal intraocular inflammation and make the point that since visual acuity remained stable till late in the course of disease, that vision


is not a good way to decide for treatment.





Birdshot retinochoroiditis: long term follow-up of a chronically progressive disease.

Describes the longterm progress of the disease.

Overview of uveitis. Pavesio. UK. 2008.

This is a comprehensive over view of the treatment of uveitis in the UK written by a UK consultant. While it is not focused on Birdshot specifically, you will find details of the treatments available to us in the UK and their side effects. It contains a warning about imuran, for some patients, and ends with a five year plan.


Overview of uveitis treatment. 2007

O’NEIL M. BISCETTE, MD, MSCmpE • HOWARD F. FINE, MD, MHSc • THOMAS E. FLYNN, MD This is a comprehensive overview paper which covers the diagnosis of various forms of uveitis, provides a chart matching HLA tests to diseases and runs through the various groups of drugs used in treatment, explaining their actions and their side effects.


Retinopathy, Birdshot. C Michael Samson. US.

This is a very detailed paper and is perhaps best read when you feel you’ve grasped the basics about eyes in general, the disease and its treatment. If there is uncertainty about whether or not you actually have Birdshot, there is a section which deals with other uveitic eye diseases which may help you follow your specialist’s thinking about your own case. Like the other papers, this one describes the disease, what happens in the eye, treatments (with effective doses given), and makes some references to studies of others working in the same field. It’s a paper well worth dipping into when you are puzzled about something happening in your own eyes.

Birdshot chorioretinopathy: clinical characteristics and evolution.

H A Priem and J A Oosterhuis. Belguim. 1988.



(You need to register to get the free adobe download).


If you want to see what our eyes look like inside, the images are here. This is a comprehensive article which describes the clinical features of Birdshot and the criteria for diagnosis. The paper is based on the five year progression of the disease in 102 patients from 14 European eye clinics in five European countries. There is a table which charts the patients’ visual acuity at the end of the five years and states the treatment each received. Most received steroid only, a couple were treated with cyclosporine, one of these with cyclophosamide as well and a few with azathioprine (imuran). The visual acuity statistics tell us how important it is to receive effective treatment, if we wish to retain our sight for as long as possible. Scrolling to page 655, takes you to Table 9. If we reach a specialist, if we accept the modern therapies on offer, there is a good chance our eyes won’t end up on a table like this one.



Birdshot retinochoroidopathy.

By A. Gasch, J. Smith, and S. Whitcup. US. 1999



This is a lengthy paper which deals with diagnosis, treatment, tests to follow the progression of the disease and prognosis. The link will take you first to a page which gives further papers from the 20th century you may wish to read. Comparing the information in these papers with the more recent papers should help us to appreciate the advances being made in the treatment of Birdshot, the rapidity of this progress and give us hope that our sight will be preserved, even though our prognosis, in the past, has been so grim. We should take comfort and hope from the idea that some of the best brains in the world are looking after our eyes.


HLA and immunogenetics. Research and tissue antigens. US. 2007

This paper delves into genetics and relates diseases to HLA markers. If you are puzzled about your HLA tests, this explains some of it and tells us how rare we and our eyes are. It also points out that animal studies are not always reliable - according to animal models, infliximab shoudn’t work. You need a medical/scientific mind to understand this paper.


Intravitreal Bevacizumab (AvastinTM) as a potent treatment for refractory macular edema in patients with uveitis.

Friederike Mackensen, Matthias D. Becker. 2006


Five patients with stubborn cystoid macular oedema and inactive uveitis at the time of treatment were given injections of avastin into their eyes. All five patients had a reduction in their macular oedema, four gained at least one additional line in visual acuity while the fifth’s remained the same. The authors note that longer follow up is required to see if the effect is transient or long lasting. More recent studies suggest that the effect is indeed transient in some patients, that repeated injections are required and it is emerging that the effect of repeated injections eventually wears off

About Lucentis injections

Lucentis is a similar anti vegf injection to Avastin. It is given into the eye, and can be funded for macular degeneration patients in the UK. NHS Trusts will fund the first three injections and, at the moment, 2008, further injections are being funded by the drug company.


Test your visual acuity online

This link takes you to a ‘test your visual acuity’ online site. (Click the vision resources tab at the top of the web page.)


Amsler Grid

This link takes you to an online Amsler grid. It is useful for checking if you have cystoid macular oedema which is the


swelling of the retina and prevents us from seeing clearly, from reading easily, seeing faces clearly and seeing far into the distance. With slight cystoid macular edema, our central vision may still be very good, but when the lines on an Amsler grid look wavy, a little (or a lot) blurred or just plain odd, there is a good chance that we have cystoid macular oedema


About Steroid and anti vegf injections

If you need steroid or anti vegf injections into an eye, the thought of this procedure is far far worse than the actual injection. (Eye surgeons hardly hurt you at all, when compared with dentists and their needles).


Long term follow up of Birdshot patients treated with steroid sparing immunomodulatory therapy

Kiss S Ahmed M Letko E Foster CS. US. 2005.



This paper reports on 35 Birdshot patients. 28 patients did not have their inflammation controlled at the point of referral and after referral, at some point during their six year follow up, all were treated with steroid sparing immunosuppression. 92.9% were treated with cyclosporine, 67.9% with mycophenolate mofetil, (cellcept) 17.9% with azathioprine, (imuran) 10.7% with oral methotrexate, and 7.1% with daclizumab (zenapax). Complications affecting the eye from Birdshot and/or corticosteroids were cataract (53.6%), cystoid macular oedema (35.7%), glaucoma (21.4%), epiretinal membrane (10.7%), and retinal detachment (3.6%). At the end of the follow up period, up to 89.3% of the patients’eyes had either the same or improved visual acuity. The 30-hertz flicker implicit time was prolonged in 58.3% of initial ERGs and in 62.5% of final ERGs. The bright scotopic amplitude was abnormal in 45.5% of initial and final ERGs. (These tests measure retinal function).


The writers conclude that long term preservation of vision is possible for Birdshot patients and prompt treatment with immunosuppressants offers the best hope of keeping retinal function.



Intravitreal Triamcinolone (steroid injection into the eye) for Refractory Cystoid Macular Edema Secondary to Birdshot Retinochoroidopathy

Adam Martidis, MD; Jay S. Duker, MD; Carmen A. Puliafito, MD. US. 2001.



This paper describes the resolution of cystoid macular oedema in two Birdshot patients through steroid injections into the eye. It contains OCT images which will help us understand our own OCT images should we have cystoid macular oedema. The authors point out the risks of these injections into the vitreous (jelly of the eye). The date of the paper, 2001, should be kept in mind. Since then, cyclosporine and/or cellcept has become accepted therapy for Birdshot and the anti vegf injections also can resolve CME. Sometimes an anti vegf injection (lucentis, macugen and avastin) is combined with steroid to enhance effect


The successful use of mycophenolate mofetil in a patient with active birdshot chorio-retinopathy refractory to azathioprine therapy: case report

VIANNA, Raul N. G.; AL-KHARUSI, Nadia and DESCHENES, Jean. Brazil. 2004.



This paper describes the successful treatment of a Birdshot patient using mycophenolate mofetil (cellcept). The patient developed cystoid macular oedema and retinal vasculitis in both eyes and had 20/70 vision in both. She was initially treated with high dose oral prednisone (steroid) and subtenon steroid injections in both eyes. However, a month later, her visual acuity had reduced to 20/100 and treatmentment with azathioprine (imuran) was started. Within two months, there was reduction of cystoid macular oedema in one eye and visual acuity improved to 20/25. The other eye also improved, but the cystoid macular oedema was not resolved and the visual acuity was 20/60. After a further four months, the oedema had resolved in the 20/25 eye, but not in the other, which suffered a further loss of visual acuity to 20/70. This eye received another steroid injection and after another four months, the cystoid macular oedema was resolved in both eyes and the patient had 20/20 and 20/30 vision. Four months after this, the cystoid macular oedema had recurred in one eye and visual acuity had reduced to 20/60 and 20/80. Since azathioprine (imuran) was not controlling the progression of the disease, treatment was changed to mycophenolate mofetil (cellcept). Within two months, visual acuity had improved to 20/20 and 20/30 and over the next three years of treatment, there was no recurrence of the cystoid macular oedema.



In this paper, the author also discusses two other studies giving statistics which demonstrate better visual outcomes in patients treated with cyclosporine or cellcept, rather than steroid alone.



Comparison of Antimetabolite Therapies for Noninfectious Ocular Inflammation.

Anat Galor MD, Henry A Leder MD, Douglas A Jabs MD, MBA, Sanjay D Kedhar MD, James P Dunn MD, George Peters III MD, Jennifer E Thorne MD, PhD. US.



These writers compared the effectiveness and side effect profiles of methotrexate, azathioprine (imuran) and mycophenolate mofetil (cellcept) in the treatment of 315 patients with noninfectious ocular inflammation. 128 patients with inflammatory eye disease were treated with methotrexate, 44 with azathioprine, (imuran) and 143 with mycophenolate (cellcept). Treatment success at the initial starting dose of the antimetabolite was achieved by 30% in the methotrexate group, 54% in the azathioprine (imuran) group and 51% in the mycophenolate (cellcept) group. After dose increase or addition of second immunosuppressive agents, the percentage of patients achieving treatment success was higher in the mycophenolate (cellcept) group than in the methotrexate and azathioprine (imuran) groups. The incidence of side effects was higher in the azathioprine (imuran) group compared to methotrexate and mycophenolate (cellcept) with more patients stopping the drug due to side effects in the azathioprine (imuran) group. These writers conclude more patients experience treatment success when taking cellcept, than when taking methotrexate or imuran.


Long-Term Follow-Up of Patients with Birdshot Retinochoroidopathy Treated with Systemic Immunosuppression

Matthias D. Becker Michael S. Wertheim Justine R. Smith James T. Rosenbaum. US. 2005.



These authors reviewed the progress of 11 Birdshot patients over 15 years. They treated five of these patients with azathioprine, (imuran) methotrexate, cyclosporine A, mycophenolate mofetil, (cellcept) and/or IvIg, as well as systemic steroid or periocular corticosteroid injections. In these patients, inflammation was reduced or stabilised. The writers conclude that even though there is still no agreed strategy for the management of Birdshot, that it is possible to use steroid sparing treatments and preserve vision.


Review of Birdshot. Cyclosporine alone produces better outcomes than steroid alone.

Kayur H. Shah MD, Ralph D. Levinson MD, , Fei Yu PhD, Raquel Goldhardt MD, Lynn K. Gordon MD, PhD, Christine R. Gonzales MD, John R. Heckenlively MD, Peter J. Kappel MD and Gary N. Holland MD. US. 2007.



This is a detailed article which covers the testing associated with monitoring Birdshot, as well as the history of the disease, symptoms and treatment. The authors state that cyclosporine is better at preserving vision than steroid taken without additional immunosuppression.



Clinical Trials

Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit to enroll.

Community Leaders


birdshot patient since 1990 and forum founder since 1999


Expert Questions

Ask a question

marlenem Message
25 Jun 2016, 12:13 AM

I get notices that there is new info; I log in and the latest info is 4 months ago. How do I find the new updates?


On my page, on the left side, there is a box that starts, Community Home, ....Discussion Forum... Questions Queue. I look at the questions queue and it gives me what questions are uanswered or what is recently answered.

sariche Message
19 Jun 2016, 01:18 PM

Hi, After 10 years of treatment on immunosuppressants, I am considering getting Retisert eye implants to manage my Birdshot. Does anyone have any experience or advise about this? --Sariche


Retisert is a very common treatment for birdshot. It is an prednisone implant that requires surgery and lasts approximately 3 years, then the next one needs to be implanted. I am not sure what happens when the patient runs out of room for these implants. There is biogradable alternative, Ozdurex, which is performed every 6 months in a doctor's office, no surgery.



There is a very informative discussion from Henry Kaplan on youtube, it will take about 30 minutes to listen to.\



Tjreinoso Message
27 Jan 2016, 05:07 PM

I posed a question late last year about Low Dose Naltrexone (LDN) for birdshot and got no feedback. I started taking it last week (2mg at bedtime) and am really excited to report that my symptoms are dramatically reduced, estimating easily less than half the symptoms! Virtually no side effects. How do I get the word out?


Try joining the birdshot group on Facebook. Birdshot Uveitis Society International.

Snardo Message
27 Jan 2016, 12:34 AM

I was diagnosed with bird shot in August 2015. I am seeing Dr. S. Foster. I am taking cyclosporin 100mg 2x / day and imuran 50 mg 2x/day. Last pictures suggested imuran is not putting it into remission . I've been on imuran since 11/2 with 2 weeks taking only 50 mg because of knee pain. Dr.would like me to try Humira. So worried about taking it. I' m very active individual and worried about illness . I have no idea how long I need to be on it. There is so little info on this disease I feel lost . I worry constantly about whether I will ever be able to achieve remission. I would appreciate any of your thoughts on humira, etc


There is a great deal of information about birdshot. There are many of us in remission but there are no quick fixes nor are there any "Cookbook" medications. You must work with your physician and your insurance company to find a treatment that works and do not give up. There is a Facebook Birdshot Uveitis Society ran by the UK that you wish to join for emotional support. D

maryyoung1417 Message
13 Oct 2015, 04:25 PM



New to this site and looking for a dr. in Tucson AZ. Can you help?


Mary Y.


I know of no birdshot specialists in Tucson. My recommendation is to call local retinologists and ask who has experience with birdshot patients. There are three uveitis specialists listed for the state of Arizona as well: Arizona



Mandi Conway, MD Background


10701 W Bell Road


Sun City, AZ 85351


Tel: 623-474-3937



19052 N RH Johnson Blvd


Sun City West, AZ 85375


Tel: 623-474-3937


Website email



Anita Prasad Schadlu, MD


1728 West Glendale Avenue, Suite 408


Phoenix, AZ 85018


Tel: 602-232-6066 Fax: 602-314-4154





Lorid Message
10 Oct 2014, 11:25 AM

Hi, I am planning to attend the call this week. I've been traveling for work and unable to join the last few. Also see there is a meeting in Dallas. I live in WI, anybody around here that I can connect with? I want to remain private, but would love someone to connect with somewhat locally. Hope you are doing ok. Lori


Hi Lori;



I am sorry, no one I know of in Wisconsin, but if I find anyone in your area, I will let you know.



The BUS has been very successful growing their support group, but in the US its extremely difficult, due to patients being so far distant from each other and the state/federal laws governing non-profits. My goal is to grow the DFW support group, with the goal next year to have a Texas-wide support meeting one Saturday, and then a US/Canada support meeting. It takes a tremendous amount of work and money, right now, I am the support group, so I need to find individuals who are willing to help share the burden toward this goal. Hope to talk to you on Thursday! D

Lemmond Message
9 Oct 2014, 06:03 PM

I was recently diagnosed with Birdshot. I am on Medicare. They are refusing to pay for CellCept because it is not FDA approved for that use. After 3 appeals with denial I am wondering if anyone else has had that experience and if there are any suggestions on how to proceed.


This is a common problem with birdshot. please contact me via my email at so we can schedule a time to talk or you can attend the FREE monthly conference call this Thursday, Oct 16. If you do not have the time and number, email me and I will send it to you. D

rnlarson725 Message
28 Apr 2014, 03:02 AM

Have you had any experience with Birdshot and Melanoma. My mother was diagnosed with both 4 years ago. She is cancer free but unable to use steriods to treat the birdshot because of possibility of cancer returning. Currenlty fighting with BCBS of MN to get approval to try IVIG treatment. Any suggestions?


I seriously doubt you will be able to get IVIG treatment approved. I have a free monthly conference call for those in those in the US and Canada, I am discussing insurance this month. If you cannot take the call, plz let me know when we can talk, this is too complex to respond to via messaging.



Hope to talk to you on conference call on Thur. D


Free call in US and Canada:


June 12 2014









760-984-1000 access code 95550#


Lorid Message
13 Apr 2014, 04:10 PM

Hi, I have Birdshot, non-infectious, bilateral, HLA-A29 positive. Starting Remicade tomorrow. I was a zombie for 6 weeks on Cyclosporine and Cellcept, before asking about the extreme fatigue. All blood work was normal, until they texted for CPK which was elevated. So, does anyone know how long after starting Remicade my hazy vision may begin to recede? I had a shot of steroids in my right eye which took 8 weeks to clear up. Thinking of getting left done as my right is getting symptoms back and don't want to have two bad eyes. Also, has anyone else experience such fatigue on the former cocktail? Does anyone have experience with Remicade and Birdshot?


Thanks for any help,




Hi. I suggest you join either the group or the facebook forum, there are more individuals who can provide assistance.



The cocktail is famous for causing exhaustion, but if you can push through the first 3 or 4 months, the tiredness recedes. Cellcept is famous for causing liver issues, cyclosporine can cause kidney issues as well as high blood pressure. Some people can tolerate it some cannot.



I have a monthly call for those in the US and Canada, last Thur, we discussed Remicade. I knew it was an infusion, but I had no idea the side effects could be so severe. Many physicians administer Benedryl at the same time, either orally or via the IV. If there is improvement, it seems it occurs after the third treatment. I discussed this on the facebook page ran by the UK birdshot group, and was surprised at the number of responses who said they had issues with Remicade; the most severe was anaphyalatic shock. The BUS facebook page is open to the public but remember any posts are also public. Remicade is not a trivial treatment either. I am in the process of writing up the findings based on the You are welcome to join my group at and join the call next month to discuss with those who have this treatment. D

Anthony13 Message
14 Mar 2014, 12:39 AM

Hello ,


My name I Anthony .I was diagnosed with birdshot retinopathy about a year ago. I was given steriod injections in right eye and this seem to have helped and now the left eye is getting bad. My doc has suggested taking cellcept . My ques. is Would this be common treatment . I am curious because of the side affects of this medication. I also no this drug is used for Lupus. I would appreciate any info . I take my sight as greatest of our senses


Hello Anthony. I have a forum dedicated to birdshot, we recently moved to



This is briefly discussed on the thread:



Birdshot is an autoimmune disorder that only destroys retinal cells, so it presents only in the eye. Since it is an autoimmune disorder, it must be treated concurrently with any inflammation. Treating with prednisone or steriods alone has long been known not to be an effective treatment. This was presented by Dr. Annika Rothova in the 2008 conference and repeated in the 2013 conference:



Steriod injections only treat the inflammation, not the underlying cause. To treat birdshot effectlively, it needs to be treated with both, steriods for inflammation but most importantly, with immunosuppressants. The best analogy I can think of is this:



The skillet on the stove has a grease fire, treating birdshot with steriods only is like putting baking soda in the skillet. It will temporarily put the fire out, but the fire comes back, because the underlying cause has not been treated; e.g., no one turned the heat down causing the fire in the first place. Treating with immunosuppressants is what "turns the heat down".



The most successful treatment to date for birdshot is the Dr. Foster "cocktail"; this is a combination of both, Cellcept and cyclosporin. The autoimmune system is quite complex, each of these drugs attacks a different part of the autoimmune cycle, and therefore, has had the best results for remission. However, the drugs may be difficult to tolerate, and there are other alternatives such as Remicade.



I highly recommend you find a physician who is skilled in treating birdshot. Here is a list of the best physicians in the US:



If you join group, you can message me privately and we can arrange to speak. I often find conversations are best. Or, I have a conference call once per month, you can join that as well. That is a free call in the US or Canada. The next call is April 10. Again, if you join the forum, you can send me a private message and I will send you the conference bridge number.



Good luck, D



Community User List

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Diagnosed with advanced birdshot in January 2016. Was misdiagnosed until that time. Presently on 6 gm CellCept per day and am tapering down on second round of Prednisine 60 mg. Disease still not...
I was diagnosed with birdshot in spring of 2007.


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I am a 65 yr. American woman, living in So. Florida. I was diagnosed about 4 years ago and am currently taking Cellcept, Humira and H.P. Acthar Gel.  I would like to be able to...

I have recently been diagnosed with BSCR and considering tx with low dose naltrexone. Wondering if anyone has experience with this approach.
Hello my name is Christian Valenzuela , I was diagnosed two years ago with a Birdshot Retinochoroidopath in both eyes ( 0.5 AV in each eye)


And I'm currently taking low-dose steroids but with...
I was diagnosed with birdshot 2 months ago. Looking for information and ideas to help manage this disease and cope with the daily frustrations it brings.
Rare Geomics Intern
Diagnosed Birdshot in 2005
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Daughter of Birdshot patient with Melanoma.
I was diagnosed with birdshot at the end of September 2013.
I was diagnosed with Birdshot Chorioretinopathy on 1/28/14. Just looking for as much info as I can, especially about treatment options.
I'm helping out a relative.
Diagnosed with birdshot in july 2012
Diagnosed with Birdshot approx. 1-1/2 yrs ago and have tried several medicines without cure. Currently on Humira shots every two weeks with good stability and minor leakage in my eyes. Am looking...
I have been seeing the retinal specialist for vision issues since February 2011, and was just diagnosed with Birdshot Chorioretinopathy in March 2012. I live in Sacramento, California. I'm just...
Was diagnosed with Birdshot Choroiditis in October 2011 - Being treated at UCSF in California
I have Birdshot. Diagnosed in June 2008. I started treatment with


Predisone shots. Which did help for a couple of months.Then had


Restisterts implanted in left eye had right eye implant...
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Have been tested for hla gene and waiting for results. Have uveitis, retinal vasculitis and optic neuritis - with the last two conditions in question by current doc.
I was diagnosed with Birdshot Chorioretinopathy in October 2009 after a blood test showed me positive for the HLA-A29 gene. Just a few days ago I found out I now have cataracts in each eye and...
My husband has been diagnosed with birdshot chorioretinopathy. I am on a quest to find an effective alternative treatment so he can stop taking the chemicals that kill his immune system.
I am a 47 year old dental hygienist who was diagnosed with Birdshot 8 years ago. After years of steroids and trying cellcept, I am trying a holistic doctor...too early to tell! I do feel much...
I want to help and support my sister with her newly diagnosed "Birdshot".
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I am a grandmother/ guardian of a 9 year old girl who was just diagnosed with Birdshot Chorioretinopathy. Everything I've read lends little hope to anything but losing vision. Being such a rare...
I am 57 years old. Diagnosed with Birdshot when I was 53.


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was diagnosed 6 months with this condition birdshot choirioretinopothy, and was wondering is there anyone out there who does alternative treatments as the steroids drive me crazy happily been...
I was recently diagnosed with birdshot and I am trying to find out all I can about it.
I'm a caucasian male (aged 47) living in London in the U.K and diagnosed a month ago with Birdshot.
I have recently been diagnosed with Birdshot. I have had Posterior Uveitis for 7 years and was on triple therapy for two years in 2002. Everything was clear for the next few years until I started...
i am 22 years old and have quite a few medical conditions.



i am part of st. john ambulance in sidcup.



i am hard of hearing and learning sign language due to hearing.


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birdshot patient since 1990 and forum founder since 1999
Diagnosed with Birdshot January 2006
I was diagnosed with Birdshot at the beginning of 2004.



With another person from the UK, I have helped to set up a birdshot support group which we have called the Birdshot Uveitis...
My name is David Isserman and I am one of the co-founders of RareShare. If you have any questions or feedback regarding RareShare, please feel free to contact me directly at

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