IPL at Univ of MI - Ann Arbor Kellogg Eye Center

Let me ask you, can you stop the steroids for a while but wear the sclerals til you see Jain? That way you’re not in pain but you can take a break before you get back on. Just a thought..what’s better, let them clog up but protect the eye with a lens and no steroids. Or take steroids and intermittently use sclerals. Just thought of this because it wasn’t an option. Do you think you could use the lotemax less and still keep the MGs functioning while using sclerals for pain management?

[Rebecca Petris]

Good news: I went to Dallas for the Dr G laserfit sclerals and they are amaxing. I wore them 10+ hours today. Great day.

Super. So glad to hear this.

But even with zero oil comfortable all day.

I think this is a really important thing for everybody to take note of. Something I've blogged about from time to time is... I think the medical world has kind of encouraged us to obsess about our MGs. But the fact is, what's our goal? To have healthy glands, or to be comfortable and functional? Keep in mind there's a ton of people out there with diseased or even mostly atrophied MGs that are not even symptomatic. The thing that makes us here different is the symptoms. It's not that we want to ignore underlying disease, but I think that letting it be acceptable to have symptom resolution as the goal is also important.

[ebi1368]

My local doctor suggested stopping steroids, getting punctul plugs and giving up looking to save my glands.

Is plug bad for Gland? How does it affect it?

Last reading was 18. Thursday i see the local doctor. Will get another.

Ive been at 17-18. No change. For years.

My local doctor suggested stopping steroids, getting punctul plugs and giving up looking to save my glands. Just try to go without oil and sclerals from here on out.

Obviously im not ready for that quite yet.

The guy at northwestern, my third doc, just wanted to toss me into sclerals. I think if you get a diagnosis you can spin things around. Without that, you’re barely managing the problem.

[edmunder]

I would say continue but I fear he may not want to be as aggressive with the methyl pred...what was your last pressure reading?

Last reading was 18. Thursday i see the local doctor. Will get another.

Ive been at 17-18. No change. For years.

My local doctor suggested stopping steroids, getting punctul plugs and giving up looking to save my glands. Just try to go without oil and sclerals from here on out.

Obviously im not ready for that quite yet.

I never stopped steroids. After a 5 day break I did one drop then another 4-5 days, i forget, i didnt have any oil coming out. So i did every day for a few days. To get it started again. Now its every other.

My options: Stop steroids. This will stop all oil. Or it has when Ive done it before.

Continue once every other day.

I would say continue but I fear he may not want to be as aggressive with the methyl pred...what was your last pressure reading?

[edmunder]

What exactly are you asking sir? It’s the 5th so you have 25 days before you see him. You’ll get prescribed that day, so that’s good. I would try to stay comfortable and do the minimum possible to stay that way until you see him. I’m certain he’s going to put you on methyl pred, but I’m not him. Are you still off the steroids? Or did you start again?

I never stopped steroids. After a 5 day break I did one drop then another 4-5 days, i forget, i didnt have any oil coming out. So i did every day for a few days. To get it started again. Now its every other.

My options: Stop steroids. This will stop all oil. Or it has when Ive done it before.

Continue once every other day.

Dowork123 I have an appointment with Dr Jain on November 30th.

I have IPL #4 on the 28th. Not sure if I will go or not. Now it seems that its all steroids.

Ive considered maybe its a steroid rebound and maybe after a week the IPLs help will be apparent and some oil will come back.

Its just that its a very large hole to get out of. Doing the manual expressions agsin. Using steroids 2-3 times a day for a few weeks to drive all the inflammation out. Plus my eyes hate the BAK.

Right now just doing once every other day. Sometimes once a day if it seems inflamed.

Any thoughts?

What exactly are you asking sir? It’s the 5th so you have 25 days before you see him. You’ll get prescribed that day, so that’s good. I would try to stay comfortable and do the minimum possible to stay that way until you see him. I’m certain he’s going to put you on methyl pred, but I’m not him. Are you still off the steroids? Or did you start again?

[edmunder]

Dowork123 I have an appointment with Dr Jain on November 30th.

I have IPL #4 on the 28th. Not sure if I will go or not. Now it seems that its all steroids.

Ive considered maybe its a steroid rebound and maybe after a week the IPLs help will be apparent and some oil will come back.

Its just that its a very large hole to get out of. Doing the manual expressions agsin. Using steroids 2-3 times a day for a few weeks to drive all the inflammation out. Plus my eyes hate the BAK.

Right now just doing once every other day. Sometimes once a day if it seems inflamed.

Any thoughts?

Dowork123 - you use heparin in pill or eye drop form? I'm interested why a blood thinner would help mgd?

Eyedrop form, 100 micrograms per ml in saline, 3 times per day, one drop each eye.

I have found almost no articles on it. I see my doc in two months and trust me, I’m going to ask how this works. I’m not sure if it’s helpijg MGD, as much as what’s causing my MGD. Which is that papilae on the inside of my upper lids. It looks like cobblestone patches of these red bumps. That’s another reason the steroids are working. He said heparin is good for people with your condition, floppy eyelid syndrome.

Dowork123 - you use heparin in pill or eye drop form? I'm interested why a blood thinner would help mgd?

[Hokucat]

hopeful_hiker , it does seem like hormonal fluctuations may be a contributing factor for you based on what I recall you posting in the past. I recall your estrogen was low at times based on blood tests? Did you ever try taking a supplement or diet changes to help with this? If so, what did/are you trying? I’m sorry if you already posted this, I have not been around the forum much for awhile!

I have a friend in the blood business, high tech area. He said frozen blood will not lose anything or change for years.

Ive asked him because my doctor told me blood serum loses the healing properties after 6 weeks. My friends doctor does 3 month batches and he said after 3 months frozen they lose their healing properties.

So either all the doctors are lying or they are uniformly misinformed.

As long as they are good and frozen in the back of your freezer they are fine for years, that's what a blood expert told me.

A lot of the growth factors are peptides. Peptides are extremely weak molecules. They feaction apart easily. Shooting the serum into the dropper bottle could damage the growth factors. Dropping the bottle could danshevthe growth factors. Some growth factors lose potency or completely disappear after being thawed for 24 hours. The bottle of serum should be wrapped in tin foil when placed in the fridge so the light doesn’t degrade the vitamin A. Ideally, I would want my serum in the freezer no longer than a month or two and just enough in a bottle for 24 hours of use. This is not efficient or cost effective. But I believe it’s the best way to preserve the serum. Everyone will have a different viewpoint on this clearly. Will the serum be ok to use, absolutely. You may not even notice a difference, but I believe it’s there based on what I know about peptides.

[edmunder]

Dowork123 interesting! I still have to figure out what causes my discomfort. Sometimes my eyes are absolutely smooth and normal, other times scrapey, and/or painful when I blink. I also have zero staining for at least 7 months now and some mild staining on sclera.

My theories

LWE: this condition is known to cause painful blinks, grittiness, and dry eye sensations because the lid wiper is not smooth. It produces less mucins then it should due to goblet cell loss. When we blink mucins glide on tear film mucins. So even with normal tear film damaged lid wiper will scrape the eyes. Lubrication and anti inflammatory drops can help.

Neuropathic pain: I feel the best after serum drops. For the last month I was using an older batch (frozen for 2 months). It could be that the good substances are dead by the third month.

Non-compliance: I push my eyes further when I have no symptoms. I feel fine but, perhaps, they are not stable enough yet. I would use less drops for instance, and skip on serum. Then I would feel really bad later. I would imagine, lack of care triggers LWE.

Hormomal tear film instability. If I felt the way I did yesterday, I can pretty much live the rest of my life like this—almost normal. But three days ago I was in constant pain the entire day from blinking, cue suicidal thoughts and desperation.

Anyway, I feel we have somewhat similar symptoms so I thought I would share my thoughts. I feel like upper lid can indeed have a huge impact.

I have a friend in the blood business, high tech area. He said frozen blood will not lose anything or change for years.

Ive asked him because my doctor told me blood serum loses the healing properties after 6 weeks. My friends doctor does 3 month batches and he said after 3 months frozen they lose their healing properties.

So either all the doctors are lying or they are uniformly misinformed.

As long as they are good and frozen in the back of your freezer they are fine for years, that's what a blood expert told me.

[hopeful_hiker]

Dowork123 interesting! I still have to figure out what causes my discomfort. Sometimes my eyes are absolutely smooth and normal, other times scrapey, and/or painful when I blink. I also have zero staining for at least 7 months now and some mild staining on sclera.

My theories

LWE: this condition is known to cause painful blinks, grittiness, and dry eye sensations because the lid wiper is not smooth. It produces less mucins then it should due to goblet cell loss. When we blink mucins glide on tear film mucins. So even with normal tear film damaged lid wiper will scrape the eyes. Lubrication and anti inflammatory drops can help.

Neuropathic pain: I feel the best after serum drops. For the last month I was using an older batch (frozen for 2 months). It could be that the good substances are dead by the third month.

Non-compliance: I push my eyes further when I have no symptoms. I feel fine but, perhaps, they are not stable enough yet. I would use less drops for instance, and skip on serum. Then I would feel really bad later. I would imagine, lack of care triggers LWE.

Hormomal tear film instability. If I felt the way I did yesterday, I can pretty much live the rest of my life like this—almost normal. But three days ago I was in constant pain the entire day from blinking, cue suicidal thoughts and desperation.

Anyway, I feel we have somewhat similar symptoms so I thought I would share my thoughts. I feel like upper lid can indeed have a huge impact.