Monday, June 27, 2011

Unsure of Treatment for my Central Serous Retinopathy

Some of you know this but I'm sure many of you don't but I have a rare eye condition called Central Serous Retinopathy (CSR). In short, I have swelling and scarring on my retina that affects my vision. Usually, for most people, this stuff clears up on its own in a few short months or goes away after treatment. Mine, on the other hand, has lingered for a good 6 years. I go annually to see an ophthalmologist (Dr. Keith Fisher, great doctor if you need one) to monitor my condition.

Each year the prognosis is the same: the fluid is still there, no change. The condition seems stable which is good and bad: good that it's not progressing, troubling that is has remained for SOooooo long. Anytime there is fluid under a person's retina, doctors give pause and usually seek means to remove it. Doctors really aren't sure what causes CSR. They also aren't really sure how to effectively treat it. And the fact that mine has moved in and taken up residence for the majority of my adult life, that makes things even more complicated.

At my visit today, my doctor recommended a possible treatment to remove the fluid that is present. Rifampin is a medicine used for the treatment of TB but has been shown to have positive effects with CSR. Here's an article discussing it.

There are many questions to be considered when deciding whether or not I should pursue this treatment.

1. My vision has worsened slightly each year for the last few years. What's the direct cause of it? Is it just the natural effects of age or is it the fluid that currently sits in several spots under my retina?

2. There are side effect risks associated with any medicine. Rifampin has some minor side-effects, like all medicines, but it has also been known to cause trouble with a person's liver. Not to mention that my urine, stools, saliva, sputum, sweat, and tears may turn red-orange (this they declare to be harmless). Can you imagine? Me turning red-orange every time I got a little sweaty? Or having big streaks down my face every time I shed some tears? That's one more reason for me to avoid exercise and sad chick-flicks, I suppose.

3. If Kyle and I consider having children soon (didn't say that we are..just if), this medicine could affect that greatly.

4. There is no telling how long I should remain on the medicine if I do start to take it. In the studies done, it seems that the fluid returned after patients stopped taking Rifampin. Would I have to take this medicine indefinitely?

Whenever considering any type of treatment, there are so many factors to weigh. I honestly don't know what to do. Talking about it makes me feel anxious but oddly enough, writing about it has taken some of the anxiety away, though it hasn't given any insight into what I should do. Since I've lived with this condition for 6+ years, there's no need for a hasty decision. Normally the decision has been "wait and see what happens." With my vision gradually deteriorating each year, very slightly, I wander when the benefit will outweigh the risks.

Please pray that Kyle and I can make a wise decision about this. I want to take care of the body God has given me best that I can (sans exercise, of course) and I don't want to make a hasty decision or delay a treatment that will be beneficial.


Rebecca said...

Seth and I will definitely pray for wisdom for you and Kyle--that God will be your vision throughout discussions and cost/benefit considerations. Love you!

Anonymous said...

Hi,my name is Jeanne, I'm 53 and also have CSR. It started in April 2009 and for the first year and a half, I would have leakage, then it would re-absorb. Unfortunately it leaked last October, and has not gone away. I go to a doctor from Wills Eye Hospital in Philadelphia. Last month we tried an oral drug called Xifaxan, it evidently has helped some people with CSR. I took it for a month and my eyesight got slightly worse, but it doesn't really have any bad side effects. Since it wasn't helping my CSR, my doctor prescribed Rifampin. I started taking it today and yes my urine is orange, but nothing else so far...My reason for trying this is, I would probably be considered legally blind in my eye that has CSR, my mother has wet macular and I know that I am at risk for getting that in either eye. So I'm trying to save my eyesight if I can. My plan is to take the drug to see if it helps and then go off of it until the problem arises again, hopefully it won't. Just thought I'd write so you didn't think you were alone and I will keep in touch and let you know how treatment goes.

Rachel said...

Thanks, Rebecca.

And Jeanne, thanks so much for sharing with me how treatment for your CSR is going. I pray it does go well and that your vision is preserved. Please let me know if the Rifampin works.

Anonymous said...

Hi there -

I came across your blog as I was searching for more info about rifampin and CSR.

I'm also a CSR patient, age 59, and it nearly caused me to stop working or driving. I went through multiple PDT (photodynamic therapy) laser treatments over the past two years, too many, and each would only last a few weeks. Both eyes have had retinal leaks, but the right eye has always been worse.

I started taking rifampin for my condition about six weeks ago, and it's had a very favorable outcome. I have nearly no excess fluid now, a marked improvement, and my vision is the best it's been in over two years.

There is concern over liver health with rifampin use, so monthly blood tests are needed, but fortunately I've had no negative effects to rifampin other than excessive heartburn. I did stop consuming alcohol due to liver concerns, but that was not a bad thing to stop since it was not helping my ongoing depression and anxiety about CSR anyway.

So here's one person who has been helped by rifampin, at this point I really don't know where I'd be without it.

The other thing I've been much more proactive about is working on how I process and deal with stress. It's been an insightful process, and I'm learning much. I'm also surprised how much one can do to mitigate stress with even simple (but effective) breathing exercises and practices.

Best of luck to you, don't give up!

Anonymous said...

At a year and half later, I wonder if you underwent the Rifampin treatment and your outcome. I have been prescribed this for my CSR. Like you, I am a wee bit anxious about it, hence my looking around for people's comments. The next step will be PDT, cool laser. Hope you are still blogging!

Mrs. Sullivan said...

I did not undergo the treatment because my husband and I had a baby boy and we weren't sure how the medicine would affect the pregnancy. As of my last appointment (about a year ago), my situation was stable but not improved. I have another checkup in late September so we'll see.