Hello everyone, I am having such a hard time these past months. i was seeing floaters and distorted shapes out of the side of my eyes. I was sent to an Opthamologist (as the Optha-Neurologist I had before told me that GCA isn't a neurological disease and referred me to this Opthamologist).
Awhile ago I posted saying that I was self-medicating with prednisone, as I wasn't getting any help from the doctors, I know it's not a good idea but didn't know what else to do.
I went to the Opthamologist on May 2nd and he said I had an eye bleed behing the right eye and floaters in the left eye and to lower my prednisone (I had upped it 60 mg for a week). I went from 60 to 20 right away as directed by the Dr. , In 9 days I went from 60 to 20mg - wow, too fast I think but this is what he said to do. On May 23rd I called the Opthamologist and told him my eyesight was getting worse; he told me to come in on the 26th of May, which i did. He said the pressure behind my eyes is higher than it was on May 2nd and prescribed me eye drops (betablocker). He also referred me to a retina surgeon that I will be seeing on June 8th (no pun intended lol). Does anyone know what that doctor will do?
The Opthamologist doesn't believe in prednisone and wants me off of it because I've been on it since 2011. I am so afraid of losing my sight and don't know what to do. The first Optha-Nuerologist (I have had 2) I had said that I would likely be on 20 mg of prednisone for the rest of my life. I am scared and need your help. Thanks so much.
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Sally001
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Hello, I’m sorry you’ve been having such a torrid time. Regards your original posts, you speak about your eyes but do you have any PMR-like or GCA-like symptoms? You may well get withdrawal aches and pains and feeling off from the large dose drops.
Regards your ophthalmologists, it seems a lot of pronouncements are being made but without any considered rationale put to you. is that correct? If they haven’t, I’m not surprised you don’t know what to do. Not believing in Pred? Why? In what situations? Also, to say you could be on 20mg Pred forever is a HUGE thing to say with big consequences and a total about face from the previous Opthal’. Why exactly? In the light of that, you should again be given a diagnosis and considered rationale for this. Do you go to your appointments with someone who can be a second ear, take notes and be ready to ask for explanations if you feel you can’t?
In addition, you may be self medicating to get rid of issues caused or made worse by the Pred itself due to high doses and yo-yo’ing, like increase in pressures and vision distortion. As the dose changes, so can the way you focus.
You may also need the input of a rheumatologist because as per usual there is likely a cross-over if you have PMR/GCA symptoms. Don’t expect ophthalmologists to know what to do about that.
I think that at your appointment with the retinal surgeon, he will do an OCR scan of the back of your eyes and then discuss how to go forward. You may get injections to clear up the bleed. I must say at this point that I have regular eye injections for macular oedema and they are not nearly as bad as they sound. Your eye is number with eye drops and the injection is very quick and you don’t see it coming. In fact sometimes the only clue I have that it has been done is a bubble of liquid in my eye. There is also a possibility of laser treatment.
They will also measure your eye pressure.
If you are having beta blocker eye drops have you been told to squeeze the eye in the gap between the corner of your eye and your nose to stop the drops going into your system.
I know there is a lot they can do for you so stay calm
"The Opthamologist doesn't believe in prednisone and wants me off of it because I've been on it since 2011."
If you have been on pred since 2011, then you are inlikely to get off it any time soon simply because after 12 years your adrenal function will be pretty compromised and that must return to get off pred altogether.
But that aside - WHY are you on pred? Who put you on it and at what dose? If you have been on 20mg long term and your occular pressures are raised then your visual problems could be entirely due to the pred causing glaucoma to develop. WHy are you being sent to a retinal surgeon?
Thank you all for your reply. I have GCA and PMR. It has been an awful time these last few years with doctors. This Opthamologist prescribed eye drops twice, both times I read the enclosed pamphlet and the warning on it said if you have COPD (which I do), do not use as it could cause heart failure - what is wrong with this doctor, I'm sure he has access to my health records. Geez, I'm fed up and am so glad I read the pamphket, I will be seeing my GP on Friday and will discuss getting a referral to a different opto-nuerologist. I am being sent to a retinal surgeon because I have a bleed in the back of my right eye and my left eye is blurry. I'm guessing I caused this by yo-yoing my pred?? I don't know, I had to do something, the doctor wasn't of any help so I upped my pred myself, which I won't do anymore. Thanks again all.
"I'm guessing I caused this by yo-yoing my pred??"
Possibly but not necessarily at all. You need a sensible doctor who isn't wearing blinkers and only bothered about his personal field of expertise. We are complex patients and every problem needs to be viewed from different angles. Unfortunately the system has been interfered with by people who don't understand that most older patients need a multidisciplinary team looking after them but it is slowly improving again.
I had a great optho-nuerologist when I was first diagnosed in 2011, had him for 3 years then he moved to Vancouver Island and I am on the mainland. I wish I could some how be in touch with him long distance as he was very good. Do you think I should up my pred some? I'm really afraid of losing my vision. I received an email back from the Opthamologist and his receptionist quoted him as saying" ''Please use the monoprost every night - every monogram for every medication will have these risks - this is not a significant risk.'' It says it could cause heart failure and death. Not a significant risk? Wow. I replied and let him know what I thought - politely - better than telling him to stick the drops up his arse. I told him I'm not taking the risk. I will get a second opinion, but in the meantime I need to do something to get the pressure down in my eyes. Thank you PMRpro, I appreciate your help.
is a MIMS extract, the text used for medical professionals.
Do you already have heart disease? Do you suffer from angina?
A VERY rare adverse effect is worsening of angina in patients with a history of heart disease. IF you have such a history, AND you used the drops and were to experience worsening angina, then you would report it and the drops should be stopped. The doctor is correct that any PIL may include events that were exceptionally rare - if death occured during the clinical trials that couldn't be ascribed to something else, it must be declared by the company as a possible effect.
If it were me, I would use the drops he has prescribed for at least a few weeks and see how you get on and at the same time you could seek a second opinion and ask about alternatives. Increasing your pred is likely to worsen the occular pressure problem - you will need the drops even more or you really are risking your sight.
By "not a significant risk" he isn't talking about the risk itself but the frequency with which it might occur. And since it is a VERY rare event, it isn't significant.
No, I don't have heart disease but do have COPD and on the pamphlet it states not to use it if you have COPD as it could cause heart failure and death. To me that is a significant risk and am not willing to risk my life.
Yes I did make that clear to the doctor when he called me yesterday and he explained that this eye drop doesn't have a beta blocker and is safe for COPD, we talked for about 20 minutes and he put my mind somewhat at ease. I will use the drops tonight and pray that all will be okay. I am nervous and I don't want to lose my sight. It's a horrible situation to be in. Thank you for your advice and for listening.
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