Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
My doc had given me Restasis to try for dry eyes. She said it would reduce the inflammation. I have been on it about 2 weeks and when I saw her the other day, the inflammation was actually worse.
I did some research today and I think I know why now. Restasis is Cyclosporine. It is a immunosuppresant!!! Same stuff that is given to transplant patients to prevent rejection and is often used in combo with methotrexate for RA as a immunosuppresant.
I think this is NOT good! I have been thinking that maybe the Lyme is in the vicinity of my eyes as my eye area seems to have a lot of problems with irritation. I am told under my eye lids it is all red and bumpy, but not like in allergies. So give the Lyme an immunosuppresant and, well, need I say more.
I think I need to get off of this stuff.
My eye doc is also looking into having any of the ABX known to work well on Lyme compounded into and eye ointment. I asked her if this could be done. That should be interesting. They already know that Doxy helps alleviate dry eyes.
Someday, someone will see this clear enough to put all the pieces together.....other then us who are figuring this stuff out the hard way.
Posts: 1251 | From california | Registered: Apr 2005
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I'm so glad you posted this. I was going to ask my eye doc about Restasis.
I have to use eye drops at least once a night and feel like I have sandpaper under my eyes.
At least the jerking and twitching has stopped.
I've had my eyes checked every six months and he swears I have no sign of damage.
Like you, I'm feeling kind of frustrated and lost.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
HI Jellybean
Sorry yo are going threw dry eye
I am also at the moment going threw dry eye, pain, & more light sensitity. My dry eye flares seem to run in cycles... I also have secondary Sjorgren's along with my lyme ect..
The only thing lately that been helping is Puralube-Ointment. I can only use it at night casue it makes my eyes blurry. Durning the day washing my face frequently helps. Don't know if its cause I "wet" my eyes with washing or not. The natural tear saline drops don't work at all for me.
I was tempted to try the restasis. Thanks so much for posting this info.
Good luck with the compouned drops you doc is working on.
I hope you can find releif soon. Really a meserable symptom
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter finds the Refresh eyedrops helpful. We've tried them ALL, and that seems to work the best.
posted
I'll second the recommendation for Refresh---
They helped my 9 year old get through a bout of dry, scratchy, red eyes. Refresh is gel-like so it hangs around on the surface of the eyeball longer.
We used those suckers constantly and they helped--luckily the dryness was transient and her eyes are feeling better.
Hope something helps!
Posts: 554 | From Naples, Italy | Registered: Jun 2006
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I have been experiencing with this since Dec. My vision is often blurry, ever changing script and dry eye problems.
My new eye doctor is lyme literate. She thought the problem was inflammation in the eye and not my actual vision changing every few months or so.
She put me on eye abx drops for two weeks and Restasis for 6 months. She has found short term treatment resulted in inflammation returning after treatment stopped.
One month after starting this combo my vison had improved and eye script was adjusted. I've been concered about Restasis being a steroid. But I'm really concerned about lyme that hides out in my eyes. ???
Jellybelly, did your redness and bumps under the lid happen after starting Restasis or before? Thanks for starting this thread. I just went through a week of bad redness and irritation in one eye.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6481 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
I have dealt with dry eyes for close to 15 years. I didn't know it was DRY eyes because my eyes watered so much. Problem is....wrong kind of tears.
I also find Refresh eye drop work pretty good. EVERYTHING has to be reapplied way to often though.
I have had the punctal occlusions/translated...tear duct plugs for about 4 years. I still was needing more and so we plugged the top too. That was to much, apparently my top drains about 80%. Thought the Restasis would reduce the inflammation and then reduce the watering.
That didn't happen, because the inflammation got worse. Doc that all of the fluid was some how holding the inflammation in. After giving this some though and now knowing what Restasis is, I'm thinking the Lyme is having a hayday with the immune suppresion around my eyes.
In answer to your guestion Pam, I have had the red bumpiness for as long as I can remember.
I have all kinds of eye issues, including regular vision changes and even blisters on my eyeball. I really think these organisms are hiding out around my eyes. Circulation is not very good around the eyes...just what these little buggers like.
I wonder what will happen if we can come up with a topical abx for eyes. Whenever I herx on orals, my eyes really give me problems. With the herx my eyes will probably swell shut....cute.
Posts: 1251 | From california | Registered: Apr 2005
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Jellybean- I also find herxing will flare my dry eye problems too. I hope the ABX drops work out for you.
I don't have an eye specialist at the moment but read the eye docs don't like you to use any drops with preservatives in them. Is this true?
Re: the "Refresh" drops. I think it has a preservative in it called "Polysorbate"...second ingredient.
This product does seem to work for me. Do I have the same kind you all are talking about? IT reads "Refresh..Dry eye therapy...Lubricant eye drops"
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Jelly, did you ask your LLMD about the safety of Restasis for Lymies?
Posts: 2451 | From Lyme Central | Registered: Aug 2001
| IP: Logged |
posted
Have you tried Soothie? It really can work wonders for dry eyes. It will initially cause blurring for about 3 minutes after applying the drops, but after that, it keeps your eyes less dry. It is OTC.
Ask your eye doc about it to see if it would work for you.
lifeline
Posts: 983 | From FL | Registered: Dec 2002
| IP: Logged |
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Foggy, no I didn't ask, he is out of state, so I haven't seen him in over a year and a half.
Posts: 1251 | From california | Registered: Apr 2005
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi lifeline
What does sotthie have in it? Is it an rx or over the counter drops?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Jelly:
I used Terramycin eye ointment (a mix of abx in a sterile oinment base) made by PFIZER and FDA approved for humans... but it's sold as a veterinary product in the USA- and sold as a human product in developing countries.
I used it at night with the full knowledge of my Opthalmologist - and it helped my eyes alot.
(I also couldn't use seroid drops - made everything worse).
I will get a brochure on Soothe (spelled w/o the i)the next time I'm at the office which will be on Thursday. I don't know what is in it without reading a brochure.
Also, Systane is a good one and patients have had good results with that one for dry eyes.
I also like GenTeal and Refresh...they are old standbys. But, with Soothe, you don't have to use it so often as it does work longer.
Unfortunately, Restasis has not worked for me.
Our docs do give out samples to patients just to see if a certain one would work for them, and I expect your eye doctor would do the same as Reps usually flood offices with samples.
lifeline
Posts: 983 | From FL | Registered: Dec 2002
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thanks lifeline
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Refresh info. My eye doc said that many eye drops have preservatives in them that can make sensitive eye problems worse due to allergens. She recommended I use this particular formula of Refresh Contacts and gave me a sample.
Sure enough when I went to buy a bottle there is two different types and if I didn't have the sample bottle with me I probably wouldn't of picked up the right one. Very slight difference in label appearance.
On Restasis usage, I'v only noticed eye improvements using it for the last 3 mths. Vision is not blurry in a.m. Eye watering constantly has stopped.
This doc made a lot of sense explaining the inflammation problems with lyme and my eyes. Even though I've made progress treating lyme sx the last 4 years, I couldn't seem to make any progress in my eye sx.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6481 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Pam the problem with Restasis is similar to taking steroids. Restasis shuts down your immune system. That is why you feel better, your immune system is no longer attacking the lyme or whatever else is there.
Shut down the immune response around the eye and the lyme just multiplies aboslutely undisturbed. The eye area is a perfect place to hide for these guys as oxygen levels are low, just the kind of environment they thrive in.
Getting oral abx to this area seem to be a bit more difficult, not impossible but it just doesn't seem to make it there in the higher levels. That is why I am hoping that the eye abx drops or ointment works.
I will look for that other kind of Refresh Contacts. Thanks
Posts: 1251 | From california | Registered: Apr 2005
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
Reducing TNF alpha and IL1 beta relieves symptoms and reduces SOME of the damage, but sure as heck does not destroy the pathogen and prevent other damage (crippling RA and osteoporosis for starters).
Humira, Fosamax, Methotrexate...in combo.(!) are NOT WORKING for one lyme patient I know.
Humira...block TNF alpha. Side effects include TB and cancer.
Our data are consistent with the hypothesis that the fatty infiltration of the liver associated with MTX treatment occurs because of a disturbance in choline metabolism.
PMID: 15539171
Choline deficiency ALREADY causing fatty liver problem.
Posts: 9430 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
posted
I've been using Similasan homeopathic formula for dry eyes. It's soothing and it doesn't sting. I bought it at Vitamin Shoppe.
Posts: 353 | From Florida boonies | Registered: Nov 2005
| IP: Logged |
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Marnie
Cyclosporine/Restasis inhibits T-lymphocytes. What are the ramifications of that? I know these are important to the immune system, but how do T-lymphocytes effect lyme?
Posts: 1251 | From california | Registered: Apr 2005
| IP: Logged |
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
I tried Restasis and it made my eyes worse. I use Systane and a allergy med called Patanol, they both help.
Posts: 6639 | From Michigan | Registered: Jun 2001
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
It blocks MATURE T lymphocytes...and promotes NEW IMMATURE ones...ones that do NOT respond to CD4.
Amazing...huh?
Theoretically it should help.
Posts: 9430 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
posted
I use Refresh also, very good. Restasis has Proplene Gylcol in it, that is a antifreeze chemical, not good P.G. makes me very P.G. is in Ketek also
Posts: 315 | From USA | Registered: May 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
![[dizzy]](graemlins/dizzy.gif)
P.G. is in Ketek also
Printer-friendly view of this topic