Hylo parin some help please

[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!

[Guest]

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

[Guest]

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.

[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.

[Guest]

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.

[Guest]

Let me also add, I’m afraid every time I go see him that he will stop the steroids. My pressure was borderline high 20. Instead of dropping the steroids, he increased them and had me do a rapid taper 4/3/2/1 for 3 days at a time instead of 7. That helped a lot too. He took pictures of the optic nerve also so we can keep an eye on it s to the steroid use.

My point is this...every time I see him, I get less worried. Because I know he won’t keave me out there in pain. He will do everything to help me. That assurance is changing my mental state. I’m less afraid to see him and less afraid about my future cause this guys working for me hardcore. I think I should be mentally better in a few months assuming things stay at least decent. I finally have good care.

[Topher3]

Let me also add, I’m afraid every time I go see him that he will stop the steroids. My pressure was borderline high 20. Instead of dropping the steroids, he increased them and had me do a rapid taper 4/3/2/1 for 3 days at a time instead of 7. That helped a lot too. He took pictures of the optic nerve also so we can keep an eye on it s to the steroid use.

My point is this...every time I see him, I get less worried. Because I know he won’t keave me out there in pain. He will do everything to help me. That assurance is changing my mental state. I’m less afraid to see him and less afraid about my future cause this guys working for me hardcore. I think I should be mentally better in a few months assuming things stay at least decent. I finally have good care.

Really great to hear things are physically going well for you, definitely gotta keep on top of your mental stat which you’re doing, it’s great to hear. Try and take it one day at a time and don’t think to far ahead on your down days as future prospects create worry in our down moods. If I may ask, what moisture chamber glasses do you wear? I wear these 1.80$ Ones from wish.com and they look like goggles and I’m too embarrassed to wear in public so I put up with the extreme dryness. I need a pair that looks a bit better and can give me more confidence and comfortability in public

[Guest]

Really great to hear things are physically going well for you, definitely gotta keep on top of your mental stat which you’re doing, it’s great to hear. Try and take it one day at a time and don’t think to far ahead on your down days as future prospects create worry in our down moods. If I may ask, what moisture chamber glasses do you wear? I wear these 1.80$ Ones from wish.com and they look like goggles and I’m too embarrassed to wear in public so I put up with the extreme dryness. I need a pair that looks a bit better and can give me more confidence and comfortability in public

I wear the Ziena nereus...they’re 160 without a script but they are passable in public. The 7eye motorcycle glasses like the pan head (larger frame) or the ventus (smaller frame) fit snug to the face. As sunglasses, they look even more normal in public if you don’t mind wearing tinted glasses indoors. They wrap around the face so as clear glasses, they do look a bit odd. They do a 10 days trial you just pay shipping so you can try 3 pairs and see before you buy.

[Topher3]

Dowork123 thanks for the info I’m gonna have a look into these. I wear sunnies out everywhere now, at the start it was embarrassing but now I just don’t care anymore my happiness is worth more to me than others judgements.

[Guest]

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.

Good info - I really appreciate you sharing - thanks so much!!!

[Guest]

If I may ask, what moisture chamber glasses do you wear? I wear these 1.80$ Ones from wish.com and they look like goggles and I’m too embarrassed to wear in public so I put up with the extreme dryness. I need a pair that looks a bit better and can give me more confidence and comfortability in public

Ziena suggested by Dowork is a good brand... as he says, they are passable in public if you need something with a clear lens.

Another option is the 7-Eye Airshield series: https://7eye.com/collections/airshield <- they are most discreet if you choose a pair where you can't see the foam gasket from the side... look at the side views for all of their Airshield glasses and you'll see what I mean (ex. "Bora" and "Churada" foam gaskets show when someone is looking at you from the side, whereas "Bali" and "Briza" do not). I used a hair dryer on mine to heat and bend the arms so they'd hold the glasses tighter to my face (heat until very hot, bend to the shape you want, hold in position until the plastic cools, try it on to see if the adjustment is good enough, repeat until the fit if perfect).

[Giacomo]

Please excuse my ignorance. What is a “compounded heparin”? Is it a solution a pharmacy makes up? If so, what strength?

[Guest]

Please excuse my ignorance. What is a “compounded heparin”? Is it a solution a pharmacy makes up? If so, what strength?

Compounded at UIC eye and ear infirmary Chicago. 100iu/ml heparin in saline solution. All bottles kept in fridge, never frozen. After 7 days, toss bottle. Can last out of the fridge up to 3 days. this is exponentially better than hypo parin. Matter of fact, hylo parin did notjjjg for me, if anything, made me worse.

[Giacomo]

Thank you very much

[Guest]

Compounded at UIC eye and ear infirmary Chicago. 100mg/ml heparin in saline solution. All bottles kept in fridge, never frozen. After 7 days, toss bottle. Can last out of the fridge up to 3 days. this is exponentially better than hypo parin. Matter of fact, hylo parin did notjjjg for me, if anything, made me worse.

Dowork123 Can you double check if the concentration is 100mg per ml or 100 units per ml?

I ask because heparin measurements are usually expressed as units, not mg... and 100mg heparin is not equivalent to 100 units of heparin... so I wanted to double check this concentration with you, if you don't mind :-)