Re: Dry Eyes,Remicade, B vitamins

[Guest guest]

Ruth,

The test he did is called a "Schirmer Test" and it uses the nasty ph paper that checks tear production as well as ph balance. When eyes are as dry as ours, it's like someone puts a piece of sandpaper in the corner of your eye, and then tries to rip it out. Falls under the "things that make you want to say damn."

Enbrel or Humira would replace the Remicade. With all of them, you do need the second immunosupressant so that you don't develop a resistance to the BRM. Remicade is developed structurally to work with Methotrexate. so if you can do that combination-- it does seem to work well together.

I'm surprised that he doesn't want to get you on Restasis drops. They are cyclosporin drops and actually shrink the lacrimal glands under the lids, as well as increase the ph balance to normal. This is a huge issue with any of the auto-immune diseases, RA, OA, Diabetes, Connective Tissue Diseases, Sjorgens, etc.

I know that as we're heating with a wood stove each winter, my eyes are so irritated right now, that I'm having to pay extra attention to my eye health also. Sustane is another eye lubricant that seems to last longer is very soothing. I use it in between any medication drops.

One thing to remember is that when you put in a medication drop--wait about 5 min before you put in a second medication. That allows the first medication to coat the conjunctiva (which goes from the iris of the eye all the way up and under the lids to the eyelash line. Eyes don't absorb any of the drops, it is truly topical. we do get a systemic effect from the medication that runs down the lacrimal ducts into the nasal cavity. It's so minor that most people don't notice any issues, and the RARE rapid heartbeat from some of the different drops is just that--rare.

If drops burn when you put them in-- it's because your eyes are dry. So you can easily use artificial tears, then your medication drops more comfortably if you do it in this order.

It won't dilute the medication.

As for the Remicade, you're still on 3mg/kg dose? How often are you getting infusions?

I started at 3mg/kg-- and by the 3rd infusion, we increased it to 5mg/kg. We also moved up the infusions to each 4 weeks. I notice a huge increase in how much I can comprehend during the first 3 wks, and then this last week- I feel like I'm out to lunch. I have to read and re-read everything in order to even start to get it. we believe that by increasing the strength, that it'll hold me over for the 28 days. (That's what I'm visualizing anyway.)

One thing that I notice-- is that I have to make sure to take the Folic Acid 1mg a day---- or I'm even more wiped out. Methotrexate, Plaquenil, Remicade, Imuran and all the other DMARDS and BRMS wipe out your B Vitamins. Not only does this vitamin defiency increase depression, increase fatigue and muscle pain-- but now they are seriously looking at the connection of Vitamin B malabsorbtion and defiency as a key trigger for neurological tremors-- Parkinsons and Restless Legs.

Vit B also is a huge part of memory and recall functions. So this is important that for all of us, we need the supplement. Folic Acid can be written via prescription for the dose we need-- and so we can take advantage of getting it via our prescription drug coverage. It's actually one of the cheapest vitamins to supplement.

I know you had more that you wanted ideas for-- but honestly, my brainfarts are bad-- so we'll have to go for seconds on these issues. LOL!

Hugs,

Tracie

NS Co-owner/moderator

[Guest guest]

Yes Tracie that was the name of the test and yes it was no pleasent,

however in light of all the other things I've had done it was too

bad. And Thank YOu for all the information it is never too much.Dr

H say restasis only works in 3 out of 10 of his patients and none

with dry eye as servere as I have and that is why he doesn't want me

to try it. I am doing all all fo the things you are suggesting. I am

getting 4mg/kg every 28 days right now and hope that the next

infusion I will get up to 5mg/kg. I am the only Sarcoid patient my

Rheumy has on Remicade so he tends to proceed slowly. I just wish I

could get the swelling to go down in my inner right eye lid...it is

uncomfortable. The only time it has gone away is when I first stated

Remicade and was getting it often. ANYWAY THANK YOU for the

information.

I seem to be able to get messages again and in the right order so I

will try to be more active now.

Take care..Haappyy Aniversary and Good luck with your next infusion.

PS I email Dr who recommends I go see Dr van Gelter @

in St Louis..thinking about it if the next infusion doesn't

work...

>

> Ruth,

> The test he did is called a " Schirmer Test " and it uses the nasty

ph paper

> that checks tear production as well as ph balance. When eyes are

as dry as

> ours, it's like someone puts a piece of sandpaper in the corner of

your eye, and

> then tries to rip it out. Falls under the " things that make you

want to say

> damn. "

> Enbrel or Humira would replace the Remicade. With all of them, you

do need

> the second immunosupressant so that you don't develop a resistance

to the BRM.

> Remicade is developed structurally to work with Methotrexate. so

if you can

> do that combination-- it does seem to work well together.

> I'm surprised that he doesn't want to get you on Restasis drops.

They are

> cyclosporin drops and actually shrink the lacrimal glands under the

lids, as

> well as increase the ph balance to normal. This is a huge issue

with any of the

> auto-immune diseases, RA, OA, Diabetes, Connective Tissue Diseases,

Sjorgens,

> etc.

> I know that as we're heating with a wood stove each winter, my eyes

are so

> irritated right now, that I'm having to pay extra attention to my

eye health

> also. Sustane is another eye lubricant that seems to last longer

is very

> soothing. I use it in between any medication drops.

> One thing to remember is that when you put in a medication drop--

wait about 5

> min before you put in a second medication. That allows the first

medication

> to coat the conjunctiva (which goes from the iris of the eye all

the way up

> and under the lids to the eyelash line. Eyes don't absorb any of

the drops, it

> is truly topical. we do get a systemic effect from the medication

that runs

> down the lacrimal ducts into the nasal cavity. It's so minor that

most people

> don't notice any issues, and the RARE rapid heartbeat from some of

the

> different drops is just that--rare.

> If drops burn when you put them in-- it's because your eyes are

dry. So you

> can easily use artificial tears, then your medication drops more

comfortably

> if you do it in this order.

> It won't dilute the medication.

> As for the Remicade, you're still on 3mg/kg dose? How often are

you getting

> infusions?

> I started at 3mg/kg-- and by the 3rd infusion, we increased it to

5mg/kg. We

> also moved up the infusions to each 4 weeks. I notice a huge

increase in how

> much I can comprehend during the first 3 wks, and then this last

week- I feel

> like I'm out to lunch. I have to read and re-read everything in

order to

> even start to get it. we believe that by increasing the strength,

that it'll

> hold me over for the 28 days. (That's what I'm visualizing anyway.)

> One thing that I notice-- is that I have to make sure to take the

Folic Acid

> 1mg a day---- or I'm even more wiped out. Methotrexate, Plaquenil,

Remicade,

> Imuran and all the other DMARDS and BRMS wipe out your B Vitamins.

Not only

> does this vitamin defiency increase depression, increase fatigue

and muscle

> pain-- but now they are seriously looking at the connection of

Vitamin B

> malabsorbtion and defiency as a key trigger for neurological

tremors-- Parkinsons and

> Restless Legs.

> Vit B also is a huge part of memory and recall functions. So this

is

> important that for all of us, we need the supplement. Folic Acid

can be written via

> prescription for the dose we need-- and so we can take advantage of

getting it

> via our prescription drug coverage. It's actually one of the

cheapest

> vitamins to supplement.

> I know you had more that you wanted ideas for-- but honestly, my

brainfarts

> are bad-- so we'll have to go for seconds on these issues. LOL!

>

> Hugs,

> Tracie

> NS Co-owner/moderator

>

[Guest guest]

Love that paper in the eyes test! I use an ointment at night called

lacrilube. It is not suitable for daytime because it is too thick, but

lasts all night so your eyes are not irritated in the morning. Refresh

Liquigel is what I use during the day. Both were recommended by a

neuro- ophthalmologist.