Autologous Serum Eye Drops

I just recently found out that bc my sjogrens is so bad, I qualify for this Autologous serum eye drops.  What I'm curious about has anyone started this process?  I know it's expensive but if it works...yes,please.  

Also, I do have the "prose lenses" that help when I can wear them.  They keep my eyes moist and the benefit from these lenses is one sees 20/20...it's so great to be able to pick up a book and not have to have it up to my nose lol...however, with my eyes always being red, I cannot wear them at that time.  So, really, it's been almost 8 mths since I last wore them.  

Which brings me to another question.  If I kept my lenses (glass) the way they told me to do so, clean and in a lens container, I would just have to clean them and I'd be good to go.  Does anyone know if the glass would become brittle if not worn in a long time?  (I hope not, they did cost a lot of money...well worth it if you are suffering badly from sjogrens).

If you're interested in this particular lens, I'd be happy to share what I've been through and how you can start your journey.  I'm not a sales person lol just a person suffering from Sjogrens.

Please, someone give me some good news 

Thank you,

Frustrated

autologus eye serum is not a conventional treatment, other than that I do not know much about it.

But, I use Restatis eye drops and have had fabulous results!

One drop twice a day in each eye.

I have secondary Sjogren's to primary JRA for 40 years. In 1987, my corneas were drying out. I had surgery to permanently occlude the lower tear ducts of both eye. Despite using eye drops, my eyes continued to dry.

In 2004 I began using Restatis...the inflammation has reduced, moisture has onxreased, vision is sharp.

Glass should be just fine stored.

The Restatis is prescription in the USA.

 I live in the UK and went to the well known eye hospital, Moorfields, to attempt to have them produce Autologous eye drops for me. The professor in charge of this procedure then told me that under EU law, autologous eye drops were not permitted as there was a tenous connection to Mad Cow Disease even though it was my own blood that was going to be used and I don't have BSE!!

Now to the good news: I had sillicone plugs inserted in the two drainage points in each eye and that has now worked for four years without a problem. No more artificial drops, no more anything. The procedure was painless and took about 5 minutes.

Good luck. 

Decades ago I tried the plugs...they were great...but at that time they were only temporary....every 2-3 days a new plug had to be inserted.

Are your plugs removable?

I have used autologus serum eye drops for some years. IF you are really lucky (in Aust) you might even get them free! They are very good and effective. I use mine when i have really bad days. The only issue is that they have to be kept frozen so you cant travel with them and you cant suddenly decide to pop in a drop, you need to anticiapte the need then wait for defrosting - that doesnt take long but it adds an extra stepin getting ready to go out etc.

I would love to hear about punctal occlusion from someone - what is it like to have it done, and how effective is it? Also, any bad side effects?

I had my plugs inserted four years ago. They can be removed if they don't suit you otherwise they are good for life. In my case I found that I was producing too much liquid and I had one plug removed from each eye.

Even through my last severe flare-up, my eyes never bothered me. 

wow, removable...back in 1987 I had borth lower tear ducts burned closed...are you able to remove them yourself?

Fortunately I can't remove them myself or I would have damaged myself!

An optician can without any problem.

This is wonderful news...thank you!

Hi ihavenonickname ~

My sjogrens is stage 4 and I'm scared to death that I am going blind.  I actually caannot read what I'm writing but afterwards, I use a magnify glass to make any corrections.  I studied court reporting  so I developed skills typing (big whoop) lol

I am sorry you are going through this disease,.  As far as drops, I use Restasis Gel every 30 minutes throughout the day, otherwise, I damage the cornea.  I've had to have bandaids on the corneas to help them heal w/o infection.  I use steroids twice a day, and restasis nighttime ointment.  This methods with the blood is actually  studies have shown that there are important serum that holds the antiflammatory and they've had success with it.  I'm just wondering who's had this and how it worked for them.

Once my eyes aee clear, I can weat the Prose Lenses again and it should restore some vision!  

Anyway, thanks for responding and the info you shared.

Frustrated

really big, warm hug!

Would tear duct plugs help?

Hi Zeet ~

I'll have to pass this info on to my doctor and see what he says about this.  Im too, go to one of the well known Kelloggs Eye Care and they are always doing research and always up to date on what's new and what isn't successful   I've been dealing with sarcoidosis and sjogrens for about 12-13 years now and it has reached an all time high...this sucks!!  

Also, as far as the silicone plugs, I had them put in on the lower tear ducts then the uupper tear ducts...each thing they try on me seems to work for a while then, nodda.

I appreciate your response, Zeet.  I'll let you know what my dr says about that mad cow (how on earth can we get that from our own blood?)  because we eat red meat  and it transfers over to our blood?  Interesting.

Take care and thank you once again!

Frustrated

Hi again, ihavenonickname,

I, too have  plugs and I think they are supposed to stay put but there is a chance they fall out.  Anyway, Zeet may have other info.

Frustrated

Hi Jennifer ~

:Punctal occlusion are plugs that are put in your tear ducts to help create natural tears.  Mine, sometimes it works but lately, nothing is working.

I don't know if you're aware of the Prose Lenses?  I do have them and when I can wear them....it is sooooo clear and I can actually read  20/20.

I cannot wear them now bc my eyes are so red that I could invite an infection in.  So, for now, I guess I have some questions for my doctor.

Thank you so much for responding...every little bit helps!

Happy Holidays

Frustrated <3

 

ihavenonicknamem

Hi again  I have plugs in the upper ducts and lwoer ducts...I'm not sure what's going on right now but my eyesight is scaryl

Warm hugs back to you 

Frustrated

I had both lower tear ducts burned closed. Sounds worst than it is. Very effective.

I am sure!!! How awful. So my vision in one eye went bookie.

Turns out my vitreous humor is detaching. Doctor says it can take nine months to completely detach.

Have to be vigilant because as the vitreus humor liquefies,it creates a vacuum that could tear the retina.

No pain, just have a Hugh floater driving me crazy.

Warm hugs!

Hi  ihavenonickname 

I never heard of the vitraous humor detaching.  That sounds bad!  I also have a floater in my right eye (that;s somewhat good eye) and, I do admit I just pull it out.  

This brings me to another question to anyone who cares to answer.  Do you get different objects in your eyes?  I get a very thin metal like and when that comes I have to be very concious to remove it otherwise it will scratch my cornea.  Also, today, the substance changed...I'm feeling like there are very, very thin pins with something forming a ball top of this pinlike feeling.  Those, too have injured my corneas.  They actually stuck rigth into my corneas...I had to pull them out bc I couldn't shut my eyes w/o putting pressure on the cornea.  I also have other particles at different times each month.

I'm going crazy bc it is really interfering with my sleep and my daily participation.  When my eyes are with the particles that can injure the corneas, I cannot go out...stuck in this house!  Blessed I have a home but it does get boring.

I told my cornea specialist about this problem and he said, oh you should hear what people tell me they feel.  I really don't think he took me serious.  I'm seeing him soon so again, I will ask for his opinion!  

So, if you are suffering from this part of the sjorgen's, please tell me how you handle this

Warm regards,

Frustrated  lol

I am frustrated for you. .sounds terrible...my eye is holding steady...hugs

I am going to ask my dr about plugs the drops or Gell don't work. Thanks for the info