Hylo parin some help please

What do you do for the dryness? Or is dryness one of your secondary symptoms that isn’t as much of an issue? I don’t know how I could cope without my hyloforte eyedrops, they are the single best thing that saved my eyes from serious damage from low lipids (apart from moisture chamber glasses)which I have only been using for 1 month compared to the 11 months without them. With the glasses my eyes just feel more comfortable around the house, I did pull down my eyelids and the posterior eyelid is less red so maybe inflammation is also down due to the glasses acting as the lipids.

Here’s what’s crazy, since I’ve been on steroids, doxy and heparin, I’m not dry. First thing in the morning, yes, I put in serum. But the rest of the day I’m not dry. I wear moisture chambers, without those, I’d be using drops constantly again. At least very 40 mins. But when I use drops I do NOT use commercial drops, I only use serum 50% because I’m not allergic to my blood. I do however get “reactions” from every single otc drop, gel or ointment. The day my eyes get real dry again, I fear for that. Because I can’t use drops...just blood serum and to be honest, serum doesn’t stay on the eye very long sadly. So I’m just in a really good place with my therapy. Once the dr diagnosed me right, I took the drugs, got my cpap machine (related to my disease) and stopped rubbing my face in the pillow, my life changed. That’s why I tell people, everyone misdiagnosed me and so the treatment was wrong. Once I got diagnosed with floppy eyelid syndrome, the dr knew to deal with the chronic conjunctivitis. Every doctor before him didn’t flip my lid. If they had, they would have seen the papillary reaction. So no one took care of me right before I met this dr in Chicago. Now I’m good, for the most part.

PS - still punching myself in the head though lol. So my eyes are good, but the brain is trying to catch up. I am so traumatized by what happened, even though I’m 95% normal physically, mentally I’m still a wounded, scared animal.

[Topher3]

[QUOTE=Dowork123 I don’t use eye drops anymore because they cause me more pain long term. [/QUOTE]

What do you do for the dryness? Or is dryness one of your secondary symptoms that isn’t as much of an issue? I don’t know how I could cope without my hyloforte eyedrops, they are the single best thing that saved my eyes from serious damage from low lipids (apart from moisture chamber glasses)which I have only been using for 1 month compared to the 11 months without them. With the glasses my eyes just feel more comfortable around the house, I did pull down my eyelids and the posterior eyelid is less red so maybe inflammation is also down due to the glasses acting as the lipids.

Thanks so much for the update Alix Much appreciated!!!

My experience head to head vs my compunded heparin, they are NOTHING alike. The compunded heparin is extremely effective, the hylo Parin, not at all. Partially, I think it’s the fact that there are other ingredients in the bottle. They are commercial eye drops also. So having those compounds in there agitate my eye. I don’t use eye drops anymore because they cause me more pain long term. Even the preservative free drops are a bunch of polymers and buffers. I don’t handle that well. I wish you could just go to a pharmacy and get it made.

Thanks so much for the update Alix Much appreciated!!!

[Alix]

Alix Dowork123

Any updates on how things are going with the Hylo-parin drops? Would be interested in how often you are using them and whether or not they improved things or not. Thanks in advance for any info you can provide!!!

Hi I have used it only a handful of times, as I don't want to use too many different eye drops at the same time. When I did use them, they didn't really do anything (positive or negative) though I think it's something you need to use on a regular basis if you are going to see results.

At the moment, I am using Ikervis at night then Hycosan Extra, which is in the same product range but is 0.2% sodium hyaluronate, to keep my eyes hydrated.

As it has a 6 month shelf life I will probably use it again at some point sorry I can't be of more help!

Alix Dowork123

Any updates on how things are going with the Hylo-parin drops? Would be interested in how often you are using them and whether or not they improved things or not. Thanks in advance for any info you can provide!!!

[Alix]

Never heard steriod is safer than Ikervis. All I have heard is the oppositive.
Steriod is powerful/effective to control inflammation but NOT for long term.

The doctors claimed steroids are safe to use long term as long as usage is monitored regularly.
However I am not prepared to risk my sight.

It makes me very angry that there must be many out there who have taken the option of using steroids long term because they were advised this was the best/only option, when in reality Ikervis could have been more appropriate, it's just that the NHS don't want to prescribe it for cost reasons.

[MGD1701]

Never heard steriod is safer than Ikervis. All I have heard is the oppositive.
Steriod is powerful/effective to control inflammation but NOT for long term.

[Alix]

Did they seriously mean it?

I can't believe a doctor could say that unless he's drunk. My opthalmologist warned me several times to be careful with steroids even while using them intermittently. Patients respond differently to steroids when it comes to an elevation in the intraocular pressure (varies primarily due to differences in eyeball flexibility among individuals). For instance, person A can reach a dangerously high IO pressure after a week of loteprednol etabonate administration (once daily) while person B might only have a marginal increase in the basal intraocular pressure after a similar use of the drug. The risk is amplified even further by other habitual factors in combination. Let's say for example your intraocular pressure is on the higher side after a few days of steroid use but not high enough to cause a steep bend of the optic nerve to cause damage to it. What if you rub your eyes accidentally in such a condition?

Putting an external pressure on the globe would increase the intraocular pressure even more and the total resultant intraocular pressure might reach a significantly high value MOMENTARILY when the eye ball would distort creating a sharp bend in the region of entrance of the optic nerves (fovea centralis) that might tear off the optic nerve itself or at least cause a sprain in it due to increased tension in the optic nerve fibres. This would take seconds to damage your optic nerve and result in glaucoma.

So at least the risk of glaucoma is frighteningly probable with the use of steroids leave alone the incidence of premature cataracts with chronic use. A damage associated with the chronic use of steroids may happen ANYTIME when it comes to glaucoma and it's pretty much a gamble with your luck. An unfortunate truth for people who are dependent on steroids. We really need more powerful substitutes to steroids than cyclosporine or lifitegrast without any threatening side effects.

Sadly yes, they were serious and they were not drunk, my appointments were first thing in the morning.....
I'd been going to Moorfields in London, which is the "best" eye hospital in the country. It wasn't just one doctor who said this, at the last appointment there were 2 doctors in the room who both agreed going on steroids long term was the best/only solution, and the time before that, the doctor I saw (a different one) also recommended steroids over Ikervis on the basis that nobody knows what the long term side effects of it is, and therefore I would be taking a gamble with my sight.....

My general impression over the past year since going back and forth to the hospital is that there is not enough knowledge of/interest in dry eye in the UK even if the life quality of the patient is poor, like myself. The doctors only seem concerned about sight threatening conditions. The last doctor I saw at Moorfields had not heard of IPL when I said I was having this done at the private clinic and actually asked me what the letters stood for.

I absolutely agree with your last sentence. Personally I am very depressed that in this day and age, there is still no surgery/medication which can fix my problem. Controlling the inflammation is all very well, but I am always going to face this problem as long as the root of my problem is not fixed which is that I hardly have any glands left, the others have either atrophied or died. So what I need is medication/surgery that will regenerate them, and at the moment, there is nothing that can help me in this regard. Yes there is probing, serum drops which MAY help, but it's not definitive.

How’s the Hylo going mate? I’ve been using it for 6 months and have recommended it to everyone I can on this forum. It’s the best drop on the market and well worth the cost. 300 drops per bottle too

I put the first drops in yesterday. I got a weird flare around 5pm so I tried them. I do NOT like the bottle lol. Hard to get the drop where I need it. But it’s a great product. I have to use it sparingly. But it’s good. My compounded heparin is better though.

[Topher3]

How’s the Hylo going mate? I’ve been using it for 6 months and have recommended it to everyone I can on this forum. It’s the best drop on the market and well worth the cost. 300 drops per bottle too

[Milo007]

They insisted long term steroid use was safer than Ikervis, this was the final straw and I haven't seen an NHS doctor since then.

Did they seriously mean it?

I can't believe a doctor could say that unless he's drunk. My opthalmologist warned me several times to be careful with steroids even while using them intermittently. Patients respond differently to steroids when it comes to an elevation in the intraocular pressure (varies primarily due to differences in eyeball flexibility among individuals). For instance, person A can reach a dangerously high IO pressure after a week of loteprednol etabonate administration (once daily) while person B might only have a marginal increase in the basal intraocular pressure after a similar use of the drug. The risk is amplified even further by other habitual factors in combination. Let's say for example your intraocular pressure is on the higher side after a few days of steroid use but not high enough to cause a steep bend of the optic nerve to cause damage to it. What if you rub your eyes accidentally in such a condition?

Putting an external pressure on the globe would increase the intraocular pressure even more and the total resultant intraocular pressure might reach a significantly high value MOMENTARILY when the eye ball would distort creating a sharp bend in the region of entrance of the optic nerves (fovea centralis) that might tear off the optic nerve itself or at least cause a sprain in it due to increased tension in the optic nerve fibres. This would take seconds to damage your optic nerve and result in glaucoma.

So at least the risk of glaucoma is frighteningly probable with the use of steroids leave alone the incidence of premature cataracts with chronic use. A damage associated with the chronic use of steroids may happen ANYTIME when it comes to glaucoma and it's pretty much a gamble with your luck. An unfortunate truth for people who are dependent on steroids. We really need more powerful substitutes to steroids than cyclosporine or lifitegrast without any threatening side effects.

[Alix]

Did the doctor start you on steroids before the Ikervis? Here’s my assumption but I hope I’m incorrect. I think the heparin alone will not help much. I think that’s why we didn’t start with it. We controlled the inflammation with steroids and the how is that when I come off, the heparin can take over. Nothing is stronger than steroids for inflammation. My doctor basically said steroids are 100 times stronger than ikervis. I’m assuming the same hoes for heparin. However, once the inflammation is lowered, the heparin can take over controlling the low level, residual inflammation.

I hope the heparin works alone though...I think the reason you’re not getting relief is your inflammation is out of control. At least that was my reasoning why.

Yes I was on steroids for 6 weeks before the Ikervis. I was also on steroids earlier this year for 6 weeks. Each time while I was on them, the inflammation went down somewhat but there was rebound pretty much as soon as I stopped both times, despite tapering off towards the end.

The doctors at the hospital said the only solution left for me was going on steroids long term to control inflammation, but I refused on the basis that I was not going to risk getting cataracts/glaucoma. They insisted long term steroid use was safer than Ikervis, this was the final straw and I haven't seen an NHS doctor since then.

The private doctors have told me Ikervis may help with inflammation, so I'm going to carry on using that at night, and then heparin during the day time for now.

I'll be interested to see how you get on with this. I've only just started using mine as I started on Ikervis 3 weeks ago, and wanted to see if it worked on not by not using other drops as well.

My first impression of this (as with all the other products in the Hylo/Hycosan product range) is that it feels soothing upon application but the effect soon dissipates.
I am hoping that the cumulative effect of application will heal my inflamed eyes over time.

Did the doctor start you on steroids before the Ikervis? Here’s my assumption but I hope I’m incorrect. I think the heparin alone will not help much. I think that’s why we didn’t start with it. We controlled the inflammation with steroids and the how is that when I come off, the heparin can take over. Nothing is stronger than steroids for inflammation. My doctor basically said steroids are 100 times stronger than ikervis. I’m assuming the same hoes for heparin. However, once the inflammation is lowered, the heparin can take over controlling the low level, residual inflammation.

I hope the heparin works alone though...I think the reason you’re not getting relief is your inflammation is out of control. At least that was my reasoning why.

[Milo007]

I believe that the "sexy" bottle is the COMOD system of push-valve delivery mechanism as is found in another eye drop named "Eubri" by Pfizer. Interestingly Eubri eye drops are also imported from Germany. This is a very effective system to keep the liquid inside the bottle sterile for long (a month) without adding preservative to it. More importantly it eliminates the chance of an "overspill" and is a great way to self administer eye drops under any circumstances

@Dowork123

Pictures of the "sexy" bottle is highly anticipated lol.