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Glaucoma and tx?
I have glaucoma and take drops for it. It's wide angle glaucoma that was caught early. Supposed to start tx in maybe 6 weeks or so. I have read (from Dr. Gish's info. paper) that there can be visual side effects - and they are listed specifically. Quite concerning. I am seeing my opthalmologist on Friday about this. But does anyone have any information or experience regarding what tx might do to a patient who has glaucoma? Or any suggestions, comments, whatever. I know you will not be responding as doctors, etc., but I am interested in your feedback.
Interferon - oh, the evil med. It will be hard to go through tx and MAYBE succeed but have to worry about going blind. I'm sure my opthal. will keep close tabs on me. And I also truly believe that this is when the doc and I need to discuss medicinal marijuana, which is legal in this state but a real PIA to obtain.
Thank you.
Do I have to be concerned about going blind and a failing liver as well?
Interferon - oh, the evil med. It will be hard to go through tx and MAYBE succeed but have to worry about going blind. I'm sure my opthal. will keep close tabs on me. And I also truly believe that this is when the doc and I need to discuss medicinal marijuana, which is legal in this state but a real PIA to obtain.
Thank you.
Do I have to be concerned about going blind and a failing liver as well?
Hi there JungleHeart, Reading with interest, I am also Gtype 1a & have been diagnosed with Glaucoma. I totally understand what you're saying and am not getting responses from people that understand the situation ogf Glaucoma pre-tx. What path did you take ? Would like to pool any info. Hope all is well with you.
Maybe he wanted to wait for the Opthmalogist 's report.
Apparently (this just in from UKgirl via Gilead webcast) GL 7797 and Riba are going for FDA approval by mid 2013 for geno's 2's and 3's. Only a year or so,but I am not sure what your genotype is.
Apparently (this just in from UKgirl via Gilead webcast) GL 7797 and Riba are going for FDA approval by mid 2013 for geno's 2's and 3's. Only a year or so,but I am not sure what your genotype is.
What is strange to me is that Dr. Gish said nothing about this when he was going through my intake paperwork. Glaucoma and corneal abrasion were on there. Either he missed it or didn't think it was important, but I'm going with the former. He was focusing on BPII. The only reason I looked up the visual problems was when I found out a few days ago that my opthalmologist wanted to see me - after I had called and requested a copy of my last dilated eye exam as required by Dr. Gish. I NEVER EVER thought of this being a problem But it is. It certainly is.
If the corneal erosion gets worse, which interferon CAN do (and remember, that list of sides apply to people with NORMAL eyes - mine aren't), I would need extremely painful surgery - doc told me about that long before this nightmare of the jump into stage high 2 came up. He said I do NOT want to ever have to do that so we have to keep that under control - it's a certain ointment. If the pressure spikes, then I might very well need eye surgery for glaucoma. This is just unreal. I was so ready to finally get on with tx. I can't believe it.
I think I'm screwed. I can't go through tx and worry about these eye issues. There are some sides that are 1-10% likely, again for normal eyes. I would imagine that for me that percentage is up considerably. So gee, what a choice. I save my eyes and wait for the new med and worry about fibrosis into cirrhosis progression - or I treat and worry about going blind and/or that horrid corneal surgery. Do I want to try to get rid of the virus by tx'ing and risking all kinds of eye BIG problems, or do I do nothing right now as far as tx? And stress over that every day? It really is a terrible dilemma.
It's like damned if I do and damned if I don't. I don't know when I'll see Dr. Gish again. I certainly would like to see him soon, but that doesn't seem to be an option. I see the dr. who does the tx planning on 8/30. That's when I'll find out EXACTLY what stage I am - and now I have a lot of questions to ask. I didn't have the list of side effects (that huge one, right Hawk?) when Dr. Gish gave me my options: don't treat and liver function will last 10 or so more years; wait for the new meds w/o interferon; treat. Not knowing about this visual thing I said treat. Now... I am WAY not so sure about that. I so wish he had talked to me about this.
If the corneal erosion gets worse, which interferon CAN do (and remember, that list of sides apply to people with NORMAL eyes - mine aren't), I would need extremely painful surgery - doc told me about that long before this nightmare of the jump into stage high 2 came up. He said I do NOT want to ever have to do that so we have to keep that under control - it's a certain ointment. If the pressure spikes, then I might very well need eye surgery for glaucoma. This is just unreal. I was so ready to finally get on with tx. I can't believe it.
I think I'm screwed. I can't go through tx and worry about these eye issues. There are some sides that are 1-10% likely, again for normal eyes. I would imagine that for me that percentage is up considerably. So gee, what a choice. I save my eyes and wait for the new med and worry about fibrosis into cirrhosis progression - or I treat and worry about going blind and/or that horrid corneal surgery. Do I want to try to get rid of the virus by tx'ing and risking all kinds of eye BIG problems, or do I do nothing right now as far as tx? And stress over that every day? It really is a terrible dilemma.
It's like damned if I do and damned if I don't. I don't know when I'll see Dr. Gish again. I certainly would like to see him soon, but that doesn't seem to be an option. I see the dr. who does the tx planning on 8/30. That's when I'll find out EXACTLY what stage I am - and now I have a lot of questions to ask. I didn't have the list of side effects (that huge one, right Hawk?) when Dr. Gish gave me my options: don't treat and liver function will last 10 or so more years; wait for the new meds w/o interferon; treat. Not knowing about this visual thing I said treat. Now... I am WAY not so sure about that. I so wish he had talked to me about this.
I understand your dilemma. I don't think I would want to chance my vision either. That description of what can happen is terrifying.
While it is your life and your decision, hang in there and see what your ophthalmologist and Dr. Gish say.
All the best to you.
While it is your life and your decision, hang in there and see what your ophthalmologist and Dr. Gish say.
All the best to you.
Yep. ;) And OH MY GOD - for sure I did not read all those sides he has listed that include anything possible under the sun. Agree, no one would do tx if they read of all those, yet, it's good that he has that comprehensive list - better that than a lot of docs who give basically no info. on sides, and I would bet that no other hep doctor has so much information that is given to their patients.
When learned that my eye doc wanted to see me - well, I had to look at the Visual Problems. I have a lot of concerns about that for good reason - I'm sure you'll agree. I feel like if I do tx now I'd have to be living with an opthalmologist who would check my DILATED eyes daily. This is a rather large block in the road right now. But I'll just have to wait and see. If I end up waiting for the non-interferon med, I have to clean up my health act, that's for sure. I'm no spring chicken, and my fibrosis level although not really bad is - well, who knows how fast 2.8+ is going to go into the dreaded 4.
It's frustrating- I've worked so hard to get this far - just to get in to Dr. Gish was a major effort and coordination but well worth it. If the decision is made not to tx now, he will remain my hepatologist (I HOPE) ~ just keep checking stuff periodically.... watching and waiting. Once you've had a doc. like him, it's like there's no turning back.
When learned that my eye doc wanted to see me - well, I had to look at the Visual Problems. I have a lot of concerns about that for good reason - I'm sure you'll agree. I feel like if I do tx now I'd have to be living with an opthalmologist who would check my DILATED eyes daily. This is a rather large block in the road right now. But I'll just have to wait and see. If I end up waiting for the non-interferon med, I have to clean up my health act, that's for sure. I'm no spring chicken, and my fibrosis level although not really bad is - well, who knows how fast 2.8+ is going to go into the dreaded 4.
It's frustrating- I've worked so hard to get this far - just to get in to Dr. Gish was a major effort and coordination but well worth it. If the decision is made not to tx now, he will remain my hepatologist (I HOPE) ~ just keep checking stuff periodically.... watching and waiting. Once you've had a doc. like him, it's like there's no turning back.
Not surprised if we did have the same list.
Gish was the head honcho at my clinic for some years ; )
Gish was the head honcho at my clinic for some years ; )
Sorry - I said "that's it" - but I was responding to the recent posts. And I'm grateful for them.
Ha - not I don't smoke pot for the pressure. Even if I could get it, and it IS legal in my state, you're right - it's not just the taste but when I smoked it a LONG time ago, I had adverse reactions to it - paranoia and panic. Happens to some people.
I will see my opthalmologist on Friday - just had a full exam in June - another scheduled in late September along with visual fields - that's how it's been since dx of glaucoma. I will not risk my eyesight - that is a certainty.
So I'll see what the ophthal. has to say, write in down, LET IT GO until my appt. with my hep dr. in late August to go over treatment (or no treatment right now) plans. By then they will have reviewed my bx slides (my hep is in Vegas two days a month - yes, month) so they had to be ordered from the local hospital. The educated guess ~ and these docs are truly experts - is that I'm late stage 2/early stage 3 fibrosis. So there are a lot of things to consider in my case. That corneal erosion is nothing to mess with either. I've already been told that if it gets worse I'll have to have surgery that is extremely painful after the numbing agent wears off. And interferon could, COULD, lead to that.
I think everyone can see where I'm leaning now. Even if the risk is below 1% it is just not worth the gamble. Not with my eyesight. The hep docs will keep tabs on me until the "new wonder drug" comes out - labs, ultrasounds, CT scans and meanwhile I clean up my act as far as my health in general. Would expect they would do another bx in a couple years - fine by me.
Thanks all.
I will see my opthalmologist on Friday - just had a full exam in June - another scheduled in late September along with visual fields - that's how it's been since dx of glaucoma. I will not risk my eyesight - that is a certainty.
So I'll see what the ophthal. has to say, write in down, LET IT GO until my appt. with my hep dr. in late August to go over treatment (or no treatment right now) plans. By then they will have reviewed my bx slides (my hep is in Vegas two days a month - yes, month) so they had to be ordered from the local hospital. The educated guess ~ and these docs are truly experts - is that I'm late stage 2/early stage 3 fibrosis. So there are a lot of things to consider in my case. That corneal erosion is nothing to mess with either. I've already been told that if it gets worse I'll have to have surgery that is extremely painful after the numbing agent wears off. And interferon could, COULD, lead to that.
I think everyone can see where I'm leaning now. Even if the risk is below 1% it is just not worth the gamble. Not with my eyesight. The hep docs will keep tabs on me until the "new wonder drug" comes out - labs, ultrasounds, CT scans and meanwhile I clean up my act as far as my health in general. Would expect they would do another bx in a couple years - fine by me.
Thanks all.
I think billy has lined out the issues pretty nicely. My doctor required a baseline retina exam -- done by a retina specialist - and he has monitored my eyes throughout my treatment and will check them again when I am done. Jude, if you haven't seen a retina specialist get a referral from your opthamologist. With your problems, you have to keep on top of this.
I have not had any pre treatment problems- other than some age-related hardening of the corneas and what will end up being macular degeneration. During tx, doctor says no hemorraging or cotton wool spots but he did see what he called orange spots in my perepheral last time. He wanted me to get a visual field check by my optometrist because he doesn't have that equipment. Embarassingly, I missed that appointment so I am going to try to get another on scheduled before my next appt with the retina guy.
I have not had any pre treatment problems- other than some age-related hardening of the corneas and what will end up being macular degeneration. During tx, doctor says no hemorraging or cotton wool spots but he did see what he called orange spots in my perepheral last time. He wanted me to get a visual field check by my optometrist because he doesn't have that equipment. Embarassingly, I missed that appointment so I am going to try to get another on scheduled before my next appt with the retina guy.
do you smoke pot for the pressure?..if so you may not like it while on tx...lots of smells and tastes are different on tx...i think you keep right on top of your eye issues but still do tx...i had eye trouble while on tx...first i went from 150 readers to 300 ...then once i lost almost all vision for about an hour...that was freaky but i think it was just because i was so tired from being anemic..i had also read a few years back of others with temporary lose of vision so i didn't panic...after the incivek at about 16 weeks into tx i told my girlfriend that i could really feel the interferon..on the 2nd to 4 th day after the shot things were not great...at about 17 weeks i got a very sharp pain in my left eye..it buckled me right over...lasted about 15 seconds and went away...then more sharp pains for a couple days..then after the eighteenth shot it got worse and started in both eyes...it felt just like blood vessels breaking....i then posted the problem on this forum...i think under "eye trouble"...this lead me back to the eye doc i saw before tx...as soon as he looked into my eyes he said "you did the right thing coming in here today" then he compared the before tx eye exam to what he saw ...he got to a retina specialist right away and we got a call within an hour to stop the interferon for good...that was it three days after the 19th shot...i had many cotton wool spots as well as retina hemorrhaging...i was so glad i went to the doctor.. interferon can cause eye trouble...my eyes are fine now..it took about 4 months post for them to be back to normal...during tx keep on top of your eyes...lots of us have worse vision during tx..thats common.. everyone is different..thats why before tx its so important to get a complete eye exam...that way if you have trouble your doctor has before and during tx pictures to compare....btw i did svr and feel great!....good luck.....billy
ooops - just one more thing (dang) - corneal erosion is far from "silent" - I was in such agony I went to the ER in tears of pain. But pressure issues tend to not be noticeable until the situation is severe.
That's it. I promise. Subject completed.
Thanks again.
That's it. I promise. Subject completed.
Thanks again.
Forgot to mention that I have corneal erosion in one eye as well. So I really do need to get on top of this. I don't want to go through tx worried and wondering how much MORE damage might be done to my eyes - esp. since most of these things are "silent" until it's too late. I was lucky to be dx'ed early with glaucoma and get it under control fast.
Anyway, thanks and I'll see what opthal. has to say.
OH - I think you and I got the same list :) I don't read most of it because indeed it would set me up the way I tend to think. But I knew I should read the Visual Problems part.
Anyway, thanks and I'll see what opthal. has to say.
OH - I think you and I got the same list :) I don't read most of it because indeed it would set me up the way I tend to think. But I knew I should read the Visual Problems part.
Thanks ~ and to you OH. Thing is, I already have an eye problem, and that's what I'm concerned about. I have glaucoma. Tx just might make that a lot worse. This is one side area that I cannot take like the others, as in, well, it might not happen, etc. I have to avoid serious eye damage - I already have enough. Only the meds I take keep me from going blind.
I have eye exams every three months - complete ones. So the latest one, which was just last month, will be my baseline. That's all well and good but ~~ the issue is the glaucoma. I use drops and ointment in my eyes three times a day for it. Dry eyes - easily remedied if someone doesn't have glaucoma. For me ...????
I have that list of all the possible Visual Problems - most of them unlikely but they have to be listed. But that's for people with no eye disease going in. I have glaucoma. Tx CAN increase pressure inside the eye in different ways, so it COULD become an issue.
That said, I'll step away from this. I'll the the opthal. on Friday and he's a good one.
I have eye exams every three months - complete ones. So the latest one, which was just last month, will be my baseline. That's all well and good but ~~ the issue is the glaucoma. I use drops and ointment in my eyes three times a day for it. Dry eyes - easily remedied if someone doesn't have glaucoma. For me ...????
I have that list of all the possible Visual Problems - most of them unlikely but they have to be listed. But that's for people with no eye disease going in. I have glaucoma. Tx CAN increase pressure inside the eye in different ways, so it COULD become an issue.
That said, I'll step away from this. I'll the the opthal. on Friday and he's a good one.
I think OH is right when she says if we worried about all the sx, no one would do treatment. The class I took prior to tx, the instructor cautioned people on reading all the sx, probably for that reason. A baseline eye exam is recommended so,if we have any problems, we can retest and compare. All reactions to these drugs need to be monitored, hence the repeated labs. I've learned on this forum to address problems sooner than later. This helped when I got an aggressive rash.
About the eyes, dehydration can cause dry eyes and rubbing ones eyes is not good. Another reason to stay hydrated. With lowered WBC's due to tx. you do not want an eye infection. I've been very careful, cause I actually had this problem lately.
Final note, information is valuable and I'm getting more useful, and accurate info from forum members than from some of these drug hotlines that keep reading the brochure back at me. Keep journals, and pay close attention to your body once you start tx.
C
About the eyes, dehydration can cause dry eyes and rubbing ones eyes is not good. Another reason to stay hydrated. With lowered WBC's due to tx. you do not want an eye infection. I've been very careful, cause I actually had this problem lately.
Final note, information is valuable and I'm getting more useful, and accurate info from forum members than from some of these drug hotlines that keep reading the brochure back at me. Keep journals, and pay close attention to your body once you start tx.
C
If we worry about all the possible side effects I don't think anyone would do tx.
The truth is most do not suffer long lasting side effects.
I'd say, not don't worry just be aware.
When I began tx, I was given a handout by my team with a long list of all possible side effects. Under each major heading ( GI disorders, Cardiovascular disorders etc) were smaller sub-headings of likely, less likely and rare but serious.
Under Vision Disorders, none were likely.
Less likely were changes on eye exam, including edema, and swelling around the lining of the back of the eye or blood vessels.
I'm not going to type out all the rare but serious, they range from dry eyes, seeing spots and more.
Therefore I think it's safe to say eye problems are unlikely but possible. Seeing your ophthalmologist before tx will help to determine if any changes take place.
The truth is most do not suffer long lasting side effects.
I'd say, not don't worry just be aware.
When I began tx, I was given a handout by my team with a long list of all possible side effects. Under each major heading ( GI disorders, Cardiovascular disorders etc) were smaller sub-headings of likely, less likely and rare but serious.
Under Vision Disorders, none were likely.
Less likely were changes on eye exam, including edema, and swelling around the lining of the back of the eye or blood vessels.
I'm not going to type out all the rare but serious, they range from dry eyes, seeing spots and more.
Therefore I think it's safe to say eye problems are unlikely but possible. Seeing your ophthalmologist before tx will help to determine if any changes take place.
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