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ICare HOME User Experiences

Submitted by terry on Sat, 01/14/2017 - 9:36pm

From FitEyes email discussion forum posts

 

 

Dave DeB 2-09-2024

I haven't had occasion to participate here much in the past year+, basically because with this forum's help my vision is under control.  But I continue with a modest monthly donation because FitEyes really deserves our support.  Here's my latest example. 

 
My left eye (whose main issue is glaucoma, well controlled with drops) recently developed a new symptom, which appears to be a recurrence of my macular edema: slight swelling of the retina, which causes that eye to have slightly rippled vision.   So this week my GS (Dr. Sauer at OCB Boston) said let's try Prednisolone again.  BUT, since I reacted strongly to it in 2021, he added Prolensa, an anti-inflammatory, as we did then, and he told me to monitor the pressure. 
 
Good thing he did, because it shot up almost immediately after months of being nice and steady.  Here's a graph from my iCare Home today.
So I'm discontinuing it for now. (Continued below.)  If it weren't for FitEyes I wouldn't have known about home tonometry.  I know most people can't afford the device, which makes me sad, but we constantly push for a better future where this will be available to everyone.  It's so important: I apparently GOT glaucoma in 2021 when an out-of-date doctor prescribed steroids without realizing it could make pressure spike rapidly!
 
The other thing is eyedrop prices.  Most drops on my Medicare Part D plan are ok, but Prolensa is not: it's $14/day (!!) unless I buy a 90 day supply for $635 co-pay!  And they don't cover the generic AT ALL, so it's even more expensive. What madness.
 
Then I remembered, through FitEyes (back then) I learned about CanadaPharmacyOnline.  I checked, and it's $47.99 there.  So in 7-10 days I'll have it for <$60 including postage.
 
Thanks to all of you who continue to support each other, and especially to Dave and Terry. 

 

 

Beth 4-30-2019
Benay, I love my ICare! There is a way for patient to have the readings immediately, so that is NOT a problem. Cost was a factor for me, so I went with the ICare over the Reichert. I am told ICare is second rate because no matter what, my technique couldn't get perfect readings. I think the precision of Reichert could come into play with low tension glaucoma especially. What has been impactful for me is to know if my readings are fairly steady or swinging upward--trends. It is simple to take numerous readings to settle any question on validity of a single reading, which is what I do if reading seems abnormal. Since I get same readings as my local optometrist and my GS do on their Goldman (I have taken it with me since I have owned it), I have a very good confidence in its accuracy and in my skill in taking readings. I love that it is portable and palm size. I had a spike to 55 on post IOL surgery steroid drops. If I had owned a tonometer, I would have gotten help as soon as I knew IOP was elevated beyond 25something for a long time. Won't happen again!

Before my purchase I was worried about obsessing, but have found it freeing, especially after noticing my daily trends and knowing what might become troublesome and when to check. Having a drop of something extra to instill at unusually high times which resist coming down after my usual relaxation or exercise is empowering. It calms me to know I can address a temporary spike. But, with a few months of experience, I have learned what to do to avoid most spikes for me.

As far as use, it took a few days to get used to it, but now it is as simple as stare at a distant focal point, apply ICare to my face and press a button, and then plug in and read my data instantly on the computer (or phone). I love the PDF graphs I can print and share with my doctors. I like that I can select a group of readings and store them in my own file(I have a growing database filed by the month). I like that I can even store them and manipulate them. I also take advantage of the note section to list diet, exercise, and other significant things like time/dose/ which drugs used at what time. App has a huge variety of notes/other data which can be entered to be co-monitored which is excellent although I need the larger format of the computer for daily use. The instant readings available by using the app while away from home, like at the eye doctor and on vacations, make ICare awesome. It stores about 500 readings, so no worries on taking readings away from computer--download later.

It may not be the monitoring device for everyone or for all cases of glaucoma, or for people of any age (steady hand is needed, I would think), but for me, it has been an exceptionally positive experience, thankfully, since it was a lot of money for a device I was unsure about conquering or utilizing. It's been about a year, and I am totally sure now that it was a good choice!

As far as how do I use it, I take morning readings and mid afternoon if I am home, and evening and bedtime readings. I took a zillion the first week and only a million or so the next week, learning a ton each day. Patterns emerge, and there is a lot of comfort in knowing the usual pattern and in actively dealing with abnormalities(I now know I must go for a walk or treadmill if I am high as it drops me almost immediately). Then, I became my own experiment, one after another, and I am still experimenting and in as scientific a way as I can when it comes to monitoring variables (before and after readings are one good thing). It is valuable to monitor IOP changes as affected by eyedrops and diet and exercise. Monitoring eyedrop switch was interesting--daily swings were crazy but then evened out after a week, and at a new lower for me level. It was a good medication change--confidence is assuring. I have had bad medications which spiked my pressures but hadn't known until 1 week (or 3 month!) recheck and they found pressures at 35 instead of lowered. That too--not happening again! Knowing my patterns is gold!

Best of luck in your research, but I wouldn't fear the ICare.

Beth 5-4-2019
David, thank you immensely for your input. As an engineer with a PhD biochemist for a husband and research partner, my experiments are carefully designed and closely scrutinized. I am most definitely scientific minded and take my experiments seriously. I am most curious about how I can safely maintain my drop doses (which are effective) while modifying about anything else I can think of to further reduce eye pressures or at a minimum to prevent any upward trends. I am a walking experiment and have learned how to modify many aspects of my life to consistently modulate/drop my pressures.

Having read your articles prior to purchasing the ICare, I spent the early weeks seeing just how much technique would affect my readings. One of my experiments was in how missing the ideal location on the eye at which to take a reading might affect a measurement. I moved my eyeball slightly up, down, left, and right (not fully in that direction, but consciously in that direction) for a series of measurements. My ICare is set to take 6 measurements at each sustained press of the button. I took 3 readings in each location, and repeated the experiment 4 times throughout the day for three consecutive days. Yes, moving eyeball affected measurements, but not as much as I expected--as much as 7 points, but a mean of 3. In contrast, a young technician at local optometrist was dangerous with a Tono-pen, a hand-held tonometer. A 40 point or so spread happened more than once as the office's protocol was for the technician to use the Tono-pen prior to the doctor taking the reading. Tono-pen readings in my experience are unreliable--skill or position, it swings too wildly to be anything but a joke. They now skip that step for my visits as I don't want that erratic data in my chart, anywhere!

Another experiment in my user skill was in position of my eyelid while taking a reading. I took a set of 2 readings widely open-eyed and then 2 relaxed, 6 times over the course of a day. The next day I switched the order, relaxed then wide-eyes. Results were consistent: consciously opening my eyes as wide as possible does add about 3-5 points. Relaxing orbital muscles while focusing on a distant point as I position the device and take a reading, my normal, gets highly repeatable data (I often take a set of 2 or three readings at a time.)

As suspected, I also learned breathing also affects the reading. It is a well-known fact that holding one's breath during reading raises it. Out of curiosity, and probably defiance at accepting other's truths as truth for my body, I wanted to test exactly what happened. Yes, breathing does have an affect, again about 3-5 points, which is significant. Numerous experiments on my breathing variations revealed my calm, normal breathing is best.

The ICare I have has an internal sensor that lights up red inside the eyepiece view if the tonometer is not held parallel. I love this feature. Tonometer must be held vertical for the green light and a reading to be permitted. I believe this is a newer feature on the device, and quite assistive in correct device positioning. Of course, one's head position is another variable. Instructions say to fix gaze straight ahead with head level. My experiments with tipping my chin up or down failed because the device is stabilized on the forehead and cheek rests, and head movement thereby tips the device to the same magnitude. The device's internal sensor wouldn't allow readings with the device out of position.

Additionally, another feature of the ICare I have is that It crosses a line through a set of data it deems invalid. Knowing that the device invalidates data when the six readings are in discrepancy is helpful too. It has a limit for garbage readings!

As far as my white coat statement, I intended to say that a nervous patient's reading would likely be abnormally high for that individual. Yes, I would hope the doctors readings are accurate for that person at that moment. It's just that the doctor may assume that that one reading is representational of the person's IOP when, in fact, it is an anomaly and not at all representational. I have had doctors take readings at the beginning of an appointment and then also at the end. I feel that is a good assessment at times to see if the patient has calmed down and if a second reading is lower and more likely representational of their typical reading for that time of day.

Life is an ongoing, unending lesson. Thanks for your guidance.

 

 

Henry wrote 1-7-2017

Anyone have experience with the ICare  Home tonometer?

I got one last August in England. Readings have been pretty close to my Opthamologist’s readings during office visits.

Alix wrote:

Hi Henry, was there any specific info you wanted? As far as accuracy goes, as far as I can remember, several people on this list have reported that their readings match or are a point higher than the ophthalmologist's. For various reasons, I haven't so far taken my Home in to the ophthalmologist office, but now that I'm familiar with the workings of my IOP I'm pretty confident that my readings and those of the dr are in line.

Using the Home for just over a year has enabled me to bring down my IOP significantly, and my last two OCTs showed no further damage to my optic nerve after a pre-tonometer period of rapid deterioration. (I hope to post about this on the main list one day but am trying to use the computer less!)

I hope your Home pays off for you as much as mine has!

 

Henry replied:

Thanks Alix,

My investment in the Icare Home has paid off tremendously.  I wanted opinions from other users.

Because of the Icare home, I have also been able to detect and track significant swings in my IOP.

Twice now, the IOP in my left eye ( the eye originally diagnosed with glaucoma ) spiked from 12 to 40 on thanksgiving weekend and Xmas weekend. My regular IOP in both eyes are between 10-15.  

Sticking to my Opthamologist’s regime of Combigan twice a day on both eyes brought the IOP under control after less than 2 days.  I am on combigan on both eyes.  No change in my routine or drugs over the period.

Wondering if it had to do with a change in my diet or other factors.

 

Adriana wrote:

I have had one for a few months now. I was pleased by how close it was to my doctor's readings. The only problem I have with it is lining it up to get measurements. Do you have any tips for taking measurements?

 

Judy wrote:

I concur with Alix's post on the match between my readings and the doctors'. I have taken mine to both my optometrist and my ophthalmologist and my ICare is always pretty similar. I don't have the software to download readings (and my IOP is not high enough that I'm concerned at this point so I only know the point range not the exact number (Note: ICare ONE model). But my in office readings are always either within the range or 1 point higher.

One note of caution on something I found I was doing wrong and it was making it hard to get accurate readings (I was getting many red and orange lights).  I was wiping the ball of the probe with an alcohol wipe while holding it in my hand. I did that in the ophthalmologist's office and she showed me that I was actually imperceptibly causing the probe stem to bend thus giving the bad reading. She demonstrated the "wobble" by twisting the probe to rotate it between thumb and forefinger. I thought I needed to grind the ball of the probe with the wipe to get it sterile but she showed me to just drag the wipe across the top of the ball while it was in the machine. Since learning that I don't have trouble with error readings unless I'm just off position.

 

David wrote:

The Icare Home is very accurate when used properly. It is a good choice for home IOP monitoring.

Keep in mind that IOP normally fluctuates minute by minute. You would expect to find a difference in IOP from one measurement to the next even when using the same tonometer and even if only a few minutes apart.

This is more true for automatic tonometers. The manually operated Goldmann tonometer used by most ophthalmologists has several types of operator bias, including the tendency for an operator to obtain the same IOP value as the previous measurement. Without bias, no two sequential IOP measurements should ever be exactly the same value because IOP is dynamic.

IOP goes through a range of about 10 mmHg (or more) in a day, and it varies by up to 5 mmHg with each heartbeat. The view of IOP as a relatively static thing that can be checked once every few months is outdated thinking.

 

Henry wrote:

Thank you all. The Icare Home has a made a lot of positive difference in managing and monitoring my eye pressure.

 

Alix Followed up June 2017:

I have an icare home so can't help with the questions about the Reichert 7CR. But in response to your conflicting concerns about monitoring your IOP - I haven't been on the main fiteyes list for a while so am not up to date with ongoing conversations, but in 2015 I got quite a few responses to my questions about home IOP monitoring, and no one reported that they had started pestering their doctor! So this might be something that some drs worry about more than being anything real. One person did say she stopped using her tonometer because the monitoring was stressful for her but that was the only negative experience reported.

 

I did take many many readings (thousands) for a year or more, not so much out of anxiety as because I was trying to figure out what caused my IOP to go up or down. It took a lot of "experiments" to isolate different factors and get a clear picture of what i should pay most attention to. So it was major project for me for a long time. Some of my earliest conclusions turned out not to be correct - there was just so much "noise" to be sorted through. These days I do fewer readings since I do seem to have figured out the most consistent patterns, although i still have a few 'experiments" left to do when time & energy allow. I do start feeling uneasy when I haven't checked my IOP for a week or so and then run through a series of readings to make sure it's still behaving the way I expect. At the moment I try not to get bogged down in decoding small variations but focus on the big picture.

 

Some of my early readings were a good bit higher than those done in the dr's office. I went with the assumption that they were accurate  (there have been some different views about how far the Home is dependent on the user for accuracy, but people who had taken theirs into the dr office reported a high degree of accuracy) and just treated them as information about what had been going on while my back was turned (that is, during every moment other than the 4 seconds a year my IOP was measured by the dr!). Fortunately I was able to bring them down pretty quickly myself so I didn't feel compelled to tell the dr about them.

 

I was wary about telling my doctor I was using a tonometer but did mention it after a few months. I'd describe his attitude as apparent benign/neutral tolerance/ lack of or mild interest - he might have been more engaged if the appts weren't so rushed. He treated office readings as the sole basis for any treatment decisions. A few weeks ago we finally set up a special appt to check my Home's accuracy and it was spot on, which was reassuring. So it's been a process, and my use of a home tonometer has been completely  "offstage". Now he's leaving town so i'll be starting over with a new dr! By the way, I had had an unusually high office reading which could have caused some upheaval, but my home monitoring gave me reassurance (confirmed at the compare & contrast appt) that it was an anomaly (which I had to figure out the reason for). So this was an example of how home monitoring can help alleviate rather than provoke anxiety.

 

I can certainly understand your worry about the cost of a tonometer - the Home, which is much cheaper, was a big step for me financially, and unfortunately it must be the case that most people with glaucoma just can't afford a tonometer at all. For myself, I have no regrets about the expenditure. My IOP came down & my OCT & visual field stabilized, and I was able to lay discussions about surgery to rest, at least for now. This might change at any time, of course, but if it does I'll know i did what i could.

Hope this feedback is helpful.

best wishes,

Alix

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