Birdshot Chorioretinopathy Questions & Answers - Dagmar

Dagmar ( dagmara56 )

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birdshot patient since 1990

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mazo asked "

Thank you for your advice Dagmar

The consultant has now increased the prednisolone to 60mg with me going onto Insulin in the next few days. I will be going back in two weeks to see if that has made a difference to the nerves. He expects to gradually reduce this to 10mg longterm with the cellcept for a period of 18 months once everything is settled..

"

I am somewhat concerned about the statement that your consultant wants to reduce the pred to 10mg long term.

There was a belief at one time that long term use of prednisone minimized the probability of the birdshot returning or getting worse. We had the first ever international symposium last year in Cambridge, hosted by MIT Broad Institute, and Dr. Foster. There were two discussions on long term use of prednisone, one by Dr. Anika Rothhavan and Dr. Jennifer Thorne; neither showed any truth to the hypothesis that long term steriod use had any value other than causing serious side effects.

Dr. Jennifer Thorne’s synopsis was: …In the short term, prednisone will improve symptoms, however, this improvement is usually seen at the higher dose levels of 1 mg/kg/day and lower doses does not maintain control of the disease. E.g., as the prednisone dose is lowered, there is a return of symptoms…

The synopsis of the symposium is at this link:

http://birdshotdocs.multiply.com/journal/item/17/_Synopsis_of_1st_International_Symposium_on_Birdshot_Choroidopathy

Also, you may wish to post to the group at bsrc.lefora.com/

There is a decent size group from GB as well as from Canada and Australia that might be able to assist you as well.

Dagmar

mazo asked "

Hello Dagmar
I have joined recently as per my profile and I am going to the eye hospital tomorrow. Since creating the profile I have discovered that the optic nerve inflammation is in both eyes but worse in the right. Although they have started me on steroids 20mg for two weeks, then added cellcept for two weeks, my vision has got worse and because I am diabetic type 2 my blood levels have gone all over the place so they have been reluctant to increase the steroids. Last Monday when I went they have mentioned doing a brain scan and I also had my first ERG ( the results of which I will get tomorrow). The consultant phoned me on Wednesday and talked about going over to insulin so that they can increase the steroids and he told me to double the Cellcept to 1 gram twice a day.

I am well aware that my vision is worse as it gets darker either in the room and also outside. Is there anything I should be asking tomorrow so as to get a better picture of my prognosis?

"

Hello Mazo!

First, let me preface that I am not a physician, nor do I pretend to be, just someone who has had birdshot and struggled with eye inflammation off and on since 1990.

I wish I could give you more concrete information, however, each case is unique, and frankly, there isn’t much a person can predict about these conditions. It is highly dependent upon the medication prescribed, the dosage, and the individual’s response to that dose.

There are several schools of thought on how to treat inflammation, I am a follower of Dr. Stephen Foster of MERSI, Cambridge, MA, USA. Dr. Foster has stated repeatedly, zero tolerance of inflammation, and aggressive treatment. It would appear to me your consultant is a follower of Dr. Foster by the description of his treatment, which is great.

The ERG provides a quantitative number for the measure of the retinal response and is provided with different wave lengths. It will also identify the number of seconds your eyes require to adapt to light. This is typical of retinal diseases. Sensitivity to light, as well as night blindness, and color fading are all side effects of retinal diseases.

The steriods are to reduce the inflammation, the Cellcept is to minimize the autoimmune response. You require both prongs of actions to get well.

You need to ask how frequently you should be getting blood tests, this is usually at least 1x/month, but given your diabetes, it probably should be more frequently. Identify from your consultant what are warning signs for your eyes, as well as the rest of your body, that will require immediate medical attention, when should you call his office, when should you go to the ER. How long is the current treatment planned? What are the alternative course of action if the prednisone doesn’t work with Cellcept? I am assuming you are taking prednisone, ask if a steriod substitute, which is a more benign steriod than pred (if such a thing is possible!) such as Cortef, might be possible. Ask also if you need to request accomodations for your work, e.g., lighting, flat screen computer monitor, etc., and if he is willing to assist with the paperwork to help you.

I have asked many times about stress, and have been told there is no correlation, my personal opinion is: cow poop! Try to minimize stress, rest your eyes. I work, and I try to close my eyes for 5 – 10 minutes each hour, it seems to help.

Eating high fiber foods also helped me when on the prednisone, seems to reduce the blood sugar fluctuation.
Cellcept should be taken on an empty stomach, many people, including myself, wake early about an hour before I usually eat breakfast, take my meds, and then go back to sleep. The pred should be taken with food to minimize stomach upset.

Good luck with your treatment.

Dagmar