Hi Mike,
It's been awhile since I post anything here but I'm around looking at other people post and their predicament...wishing them quiet eyes and healthy life.
As for me: I'm currently on Imuran (100 mg a day taken at night) since Aug '11, Prednisone 5 mg & 10 mg a day taken alternately, Pred Forte once a day on alternate day, Combigan 2x a day & Azopt 3x a day (to control my IOP). So far all blood tests done show no abnormalities (except for ANA high).
My uveitis specialist and rheumatologist are happy with my condition positive progress. Thus now I maintain an appointment every 3 months with my uveitis specialist and rheumy. But latest appointment with the uveitis specialist (last Fri, 08/06/12) shows that IOP on my left eye has increased to 26 (lens stuck to iris, synachae present), right @ 19. Her concern is I might get acute glaucoma which can cause blindness. She is suggesting for me to see the glaucoma specialist next month and consider doing the surgery (synachaelisis, cataract & shunt for glaucoma treatment).
My questions are (need your opinion to assist me in making the best decision):
1) I have the feeling that the glaucoma specialist is not keen in implanting the shunt. She has earlier suggested to do laser iridotomy. I'm confused on which one to choose: laser iridotomy/trabe OR shunt?
2) Should we try the laser iridotomy first and if the IOP is still not under control then proceed with trabe and finally shunt?
3) I'm planning to get pregnant in next 1-2 yrs. My uveitis specialist and rheumy already knows abt this. They are OK with the plan but ask to give at least 1 to 1 1/2 yrs to sort the eyes first before trying to get pregnant. My uveitis specialist did mention that chances of me getting acute uveitis attack during pregnancy and after giving birth is high thus if shunt is already in place at least she can manage the inflammation without having to worry on the increase IOP. Again...which one is the best decision: iridotomy/trabe OR shunt? I'm willing to proceed with shunt if it can assist me in preparing myself for pregnancy.
4) Mike, I know you have shunt implanted in your eyes? Is it on both eyes? Can you feel the shunt is there...at your upper conjunctiva? Any complication?
5) There are tines I feel discomfort and slight eye pain especially on the left eye..it comes and go. The uveitis specialist did told me that my eyes are dry. Thus I'm using Vismed Gel during day and night to overcome the dryness. Can the discomfort and slight eye pain caused by the dry eyes or is it the increase IOP symptom?
To be honest, I'm really scared that I might get the acute glaucoma and become blind...I'm actually happy that my eyes have been quiet for quite sometimes (10 months already) but at the same time I'm disappointed and sad that the glaucoma has negatively progressed.
Mike, hope to hear from you soon.
Thanks,
Yati
Updates on my uveitis condition & opinion required
Moderators: Mike Bartolatz, kwork
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Mike Bartolatz
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Re: Updates on my uveitis condition & opinion required
Yati,
first off the goal is 'off all steroids without inflammation' and you are on oral and topical steroids. either the Imuran has to be increased to get you there or another drug needs to be added such as a TNF A blocking drug like Remicade or Humira. you indicate your ANA is high so what tests have been done to rule out things associated with positive ANA? do you have ANTI RO52 (SSA) or ANTI LA (SSB) linked to Sjogren's syndrome or Systemic Lupus Erythematosus that could explain your uveitis now complicated by glaucoma? is your elevated IOP linked to the corticosteroids? could your uveitis be linked to Sarcoidosis or one of the diseases linked to sarcoidosis as a subset such as heerfordt's disease, Blau syndrome etc that don't have lung involvement but are granulomatus in nature? do you also have dry mouth and if so have you had a lip biopsy to look for Sjogren's or Sarcoidosis both of which present with severe dry eyes and dry mouth? Sarcoidosis is a diagnosis of exclusion.
have you been tested for Amyloidosis? Amyloid A is increased in Sarcoidosis and can impact the fetus as well as cause heart, lung, kidney and CNS deposits that can impact organ function.
as to glaucoma surgery, if it were me I would look into a valve implant such as the AHMED valve which has a better chance of tissue not growing over the opening. If your glaucoma is linked to steroid use it is imperative to move on to other drugs to get you off all steroids if at all possible.
I am not a doctor but these are the goals the Dr Foster has with his patients here in the USA because the constant use of steroids keeps the immune system from learning NOT to attack the eyes for some reason that I can't explain. once you get to off all steroids without inflammation then the clock starts ticking on the needed two year period of treatment to retrain the immune system to stop attacking the eyes.
It is my lay opinion that more could be done to figure out the underlying cause of your uveitis. this has to be determined so that the cause can be treated in a steroid sparing approach just like the eyes. Imuran alone isn't keeping your eyes quiet. either the dose is incorrect (not enough) or it isn't going to work and you need to move on to another drug in the DMARD class such as methotrexate or Cellcept alone or in combination with another class of medication such as Remicade or Humira. Remicade seems to work the best.
I don't have shunts implanted and I have not had glaucoma surgery of any kind. pressure lowering drops worked to keep my eye pressure below 25 but the damage was already done from steroids which caused the increased IOP. today my pressure is in the lower range of normal as my eyes are quiet now.
your doctor is correct in the impact of pregnancy on uveitis. many women have had the increased inflammation, then quiescence . then shortly after giving birth hormone levels go back up and the uveitis returns.
If you have cataract surgery this will break the adhesion between the iris and the lens. this worked for me and my iris looks normal again.
what is your nationality? this can sometimes indicate what might be present as an underlying cause. if of asian decent, vogt Koyanagi harada's disease is at increased risk. if your ancestors came from an area of the Silk Road, then Behcet's disease could be tested for (HLA B51). Sarcoidosis is also a consideration as is SLE. if you have rashes on your face or Legs, these might also be linked to some of these things.
if the adhesion is new and synechiae is present that would indicate active inflammation. has this progressed to involve the middle or back of the eye? have they done Optical Coherence Tomography or Fluorescein angiogramy (or indocyanine green dye) to look for Cystoid Macular Oedema or vascular changes to the back of the eye?
Wish you the best,
Mike
first off the goal is 'off all steroids without inflammation' and you are on oral and topical steroids. either the Imuran has to be increased to get you there or another drug needs to be added such as a TNF A blocking drug like Remicade or Humira. you indicate your ANA is high so what tests have been done to rule out things associated with positive ANA? do you have ANTI RO52 (SSA) or ANTI LA (SSB) linked to Sjogren's syndrome or Systemic Lupus Erythematosus that could explain your uveitis now complicated by glaucoma? is your elevated IOP linked to the corticosteroids? could your uveitis be linked to Sarcoidosis or one of the diseases linked to sarcoidosis as a subset such as heerfordt's disease, Blau syndrome etc that don't have lung involvement but are granulomatus in nature? do you also have dry mouth and if so have you had a lip biopsy to look for Sjogren's or Sarcoidosis both of which present with severe dry eyes and dry mouth? Sarcoidosis is a diagnosis of exclusion.
have you been tested for Amyloidosis? Amyloid A is increased in Sarcoidosis and can impact the fetus as well as cause heart, lung, kidney and CNS deposits that can impact organ function.
as to glaucoma surgery, if it were me I would look into a valve implant such as the AHMED valve which has a better chance of tissue not growing over the opening. If your glaucoma is linked to steroid use it is imperative to move on to other drugs to get you off all steroids if at all possible.
I am not a doctor but these are the goals the Dr Foster has with his patients here in the USA because the constant use of steroids keeps the immune system from learning NOT to attack the eyes for some reason that I can't explain. once you get to off all steroids without inflammation then the clock starts ticking on the needed two year period of treatment to retrain the immune system to stop attacking the eyes.
It is my lay opinion that more could be done to figure out the underlying cause of your uveitis. this has to be determined so that the cause can be treated in a steroid sparing approach just like the eyes. Imuran alone isn't keeping your eyes quiet. either the dose is incorrect (not enough) or it isn't going to work and you need to move on to another drug in the DMARD class such as methotrexate or Cellcept alone or in combination with another class of medication such as Remicade or Humira. Remicade seems to work the best.
I don't have shunts implanted and I have not had glaucoma surgery of any kind. pressure lowering drops worked to keep my eye pressure below 25 but the damage was already done from steroids which caused the increased IOP. today my pressure is in the lower range of normal as my eyes are quiet now.
your doctor is correct in the impact of pregnancy on uveitis. many women have had the increased inflammation, then quiescence . then shortly after giving birth hormone levels go back up and the uveitis returns.
If you have cataract surgery this will break the adhesion between the iris and the lens. this worked for me and my iris looks normal again.
what is your nationality? this can sometimes indicate what might be present as an underlying cause. if of asian decent, vogt Koyanagi harada's disease is at increased risk. if your ancestors came from an area of the Silk Road, then Behcet's disease could be tested for (HLA B51). Sarcoidosis is also a consideration as is SLE. if you have rashes on your face or Legs, these might also be linked to some of these things.
if the adhesion is new and synechiae is present that would indicate active inflammation. has this progressed to involve the middle or back of the eye? have they done Optical Coherence Tomography or Fluorescein angiogramy (or indocyanine green dye) to look for Cystoid Macular Oedema or vascular changes to the back of the eye?
Wish you the best,
Mike
Mike Bartolatz
Moderator
Moderator
Re: Updates on my uveitis condition & opinion required
Hi Mike,
Sorry for the late reply. I went to see my glaucoma specialist on the 15th June. She has examined my eyes and she agreed with my uveitis specialist that I really need to consider to have the surgery on my left eye first as the "angles are closing up" and I could get acute glaucoma anytime & anywhere. She explained that she will do a synachelisis (forgive my mispeling), phaco (cataract) and do the tube shunt implant which is more efficient for uveitic patients. She also explained to me that all surgey has it's risk. I'm actually terrified to hear this...that I can go blind if postoperative the eye got infection or my corneal won't heal...But according to her I don't have much option, I can also go blind if I got that acute glaucoma attack. So many things to think about make me feel tired and down...
Anyway, we have set the surgery date on this coming 4th July. I pray hard that the surgery will go smoothly and the eye can recover with not much changes to my vision (so scared now). My glaucoma specialist did instruct to do several test such as Visual Field Test, OCT, CCT. Visual Field Test result comes back OK with "general reduction to sensitivity" in both eyes, CCT shows good result (if I'm not mistaken this test is to assess the cornea rite?) but OCT on the left eye could not be done as the pupil won't dilate even after 4 times of dilating drops. FYI, the adhesion (synachae) is not new and currently there is no active inflammation going on (the eyes has been quite for 10 months).
My rheumy is the one who is doing all the blood work and monitoring on symptom of other autoimmune disease. Since last year he had done two HLA B27 test, test for SLE and RF (6 months apart) and the results comes back negative. I did ask my uveitis specialist will she taper my oral steroid and her answer is "yes, but slowly"..will discuss this with my rheumy when I see him this coming Wednesday.
According to my uveitis specialist the reason that my IOP increase is because of the adhesion itself as it blocks the outflow channel and making the the "breathing space" for the eyes to breath limited (this is how she explains to me).
My nationality is Malaysian. Currently I don't have dry mouth syndrome. I am feeling down and demotivated at times making me feel tired especially towards the evening. My anxiety in waiting for the surgery date almost make me lost my mind...
Sorry Mike for the assumption that you had a shunt surgery...my mistake. And sorry for the long post...uveitis has really change my life and it is a long battle perhaps whole life battle to fight (for some of us)..
Regards,
Yati
Sorry for the late reply. I went to see my glaucoma specialist on the 15th June. She has examined my eyes and she agreed with my uveitis specialist that I really need to consider to have the surgery on my left eye first as the "angles are closing up" and I could get acute glaucoma anytime & anywhere. She explained that she will do a synachelisis (forgive my mispeling), phaco (cataract) and do the tube shunt implant which is more efficient for uveitic patients. She also explained to me that all surgey has it's risk. I'm actually terrified to hear this...that I can go blind if postoperative the eye got infection or my corneal won't heal...But according to her I don't have much option, I can also go blind if I got that acute glaucoma attack. So many things to think about make me feel tired and down...
Anyway, we have set the surgery date on this coming 4th July. I pray hard that the surgery will go smoothly and the eye can recover with not much changes to my vision (so scared now). My glaucoma specialist did instruct to do several test such as Visual Field Test, OCT, CCT. Visual Field Test result comes back OK with "general reduction to sensitivity" in both eyes, CCT shows good result (if I'm not mistaken this test is to assess the cornea rite?) but OCT on the left eye could not be done as the pupil won't dilate even after 4 times of dilating drops. FYI, the adhesion (synachae) is not new and currently there is no active inflammation going on (the eyes has been quite for 10 months).
My rheumy is the one who is doing all the blood work and monitoring on symptom of other autoimmune disease. Since last year he had done two HLA B27 test, test for SLE and RF (6 months apart) and the results comes back negative. I did ask my uveitis specialist will she taper my oral steroid and her answer is "yes, but slowly"..will discuss this with my rheumy when I see him this coming Wednesday.
According to my uveitis specialist the reason that my IOP increase is because of the adhesion itself as it blocks the outflow channel and making the the "breathing space" for the eyes to breath limited (this is how she explains to me).
My nationality is Malaysian. Currently I don't have dry mouth syndrome. I am feeling down and demotivated at times making me feel tired especially towards the evening. My anxiety in waiting for the surgery date almost make me lost my mind...
Sorry Mike for the assumption that you had a shunt surgery...my mistake. And sorry for the long post...uveitis has really change my life and it is a long battle perhaps whole life battle to fight (for some of us)..
Regards,
Yati
-
Mike Bartolatz
- Posts: 6595
- Joined: Fri Feb 06, 2004 9:58 pm
Re: Updates on my uveitis condition & opinion required
you might want to ask your doctors about anxiety medications and antidepressant meds if your mood continues to be 'down'. the anxiety only makes your immune system more hyped up. it is common for someone in your position to have these problems. the oral steroids could be adding to this too so once off of them, your mood should improve. inflammation adds to fatigue. if you can exercise that can help to improve this.
your vision it to the point with risk of glaucoma that you have to go forward with the surgeries. right now that is the most pressing concern. you will do well, just follow your doctors recommendations. he will pretreat your eyes with steroids to help prevent an exacerbation of uveitis. I can't recall if Durezol is available where you live but it has a very good track record in helping to keep inflammation from occuring. if the inflammation does return, it can be treated with regional corticosteroid injections. I had this problem after cataract surgery.
the doctors have to be able to watch the back of your eyes for cystoid macular edema and they cannot see it or test for it right now. whatever vision you have has to be kept and right now the risk is great with the glaucoma present.
you have to very slowly taper off the oral steroids or your body can become very sick as when you take oral steroids your body stops making it's own steroids and it has to start producing them once again before you stop them.
my best to youi,
mike
your vision it to the point with risk of glaucoma that you have to go forward with the surgeries. right now that is the most pressing concern. you will do well, just follow your doctors recommendations. he will pretreat your eyes with steroids to help prevent an exacerbation of uveitis. I can't recall if Durezol is available where you live but it has a very good track record in helping to keep inflammation from occuring. if the inflammation does return, it can be treated with regional corticosteroid injections. I had this problem after cataract surgery.
the doctors have to be able to watch the back of your eyes for cystoid macular edema and they cannot see it or test for it right now. whatever vision you have has to be kept and right now the risk is great with the glaucoma present.
you have to very slowly taper off the oral steroids or your body can become very sick as when you take oral steroids your body stops making it's own steroids and it has to start producing them once again before you stop them.
my best to youi,
mike
Mike Bartolatz
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