Tracie...... More Remicade Qts

[Guest guest]

Thank You Tracie for the info about Blepharitis. I am using the baby

shampoo already and I am already on the predforte drops. I called

the number you gave me for remicade and was told to call 1-800-457-

6399. I wasn't able to get through to them today but will try again

tomorrow. The Ophthalmologists here won't prescript Restasis to

someone with as servere dry eyes as mine.

And as if life wasn't challenging enought the orthopedic doc thinks I

have a stress fracture in my foot!! Right foot and no one to drive

me around. Oh well I guess it is too cold to go anywhere anyway!

I sure wish I was able to take my annual trip to Calif about now!!

Thanks again

Ruth

In Neurosarcoidosis , tiodaat@... wrote:

>

> In a message dated 2/7/07 5:06:27 PM Pacific Standard Time,

> olehomepla@... writes:

>

>

> > I have been diagnosed with severe Blepharitis in

> > both eyes. I have two weeks to try to impove it without

> > antibiotics. Does Blepharitis mean I have to stop Remicade? It is

> >

>

> Ruth,

> Blepharitis is an inflammation of the eyelid, generally right at

the eyelash

> line. You may notice that your eyelashes are thinning, and that is

not a

> serious problem.

> What the MD that I worked for had his patients do was to get some

good old

> 's Baby Shampoo, no tear formula-- and use a Q-tip dipped in

the shampoo

> to wash the eyelids, inside and out. 2x daily. This can be done

as a regular

> part of your daily hygiene-- indefinately. The shampoo is so

gentle it

> doesn't hurt at all!

> I hope that your Ophthalmologist (MD) gave you some PredForte Drops

that you

> can use, that will bring down the inflammation. You need also to

be using

> artificial tears (get the ones with no preservatives) very often.

If you can

> afford it-- get the ones that have a single use container.

Sometimes what

> happens is that if we touch our eyelids with the tip of the dropper

bottle when we

> put in our eyedrops, this bottle can get a bacteria on it. That

can keep the

> eyelids inflammed.

> The other drop, if you can tolerate them-- is the Restasis drops.

This is

> cyclosporine in eyedrop form, and it really brings the inflammation

down, and

> helps the lacrimal tear glands that line our eyelids produce more

tears.

> As far as the Remicade-- I'd be calling the Remicade Q & A line,

and talk to

> them-- I don't think it would have to be stopped, as you are

dealing with an

> inflammatory process, and not an infection at this time.

> If your eyelids do become infected, then yes, you'd want to get

that under

> control before you get another infusion.

> I suspect that the Restasis will work for you. I was thinking that

it's your

> MD that wasn't crazy about them-- but it's worth the try. It was

down in LA

> *USC--that they were developed for people with systemic autoimmune

disease

> that disrupts the tear production. I was able to see the MD that

developed

> them--personally (he was the neuro-ophthalmologist that was on the

board for the

> clinical trial with the Remicade) and what a awesome doc.

> They also have one of 3 machines that can actually calibrate the

inflammation

> in our optic nerves. It's not yet FDA approved, but hopefully soon.

>

> Here is a phone # for contact:

>

> Phone

>

> Information for REMICADE: 1-

>

> http://www.remicade.com

>

[Guest guest]

The Ophthalmologists here won't prescript Restasis to

someone with as servere dry eyes as mine.

Ruth,

You need a new Ophthalmologist. One of the biggest areas of sarcoidosis inflammation is the eyes, 2nd to the lungs. When those glands that line our eyelids get so inflammed, and scarred--(they too look like the cells in a sponge when seen under a microscope) then we aren't going to produce tears-- and then add the meds, and even our tears become somewhat "toxic"-- we end up with the extremely severe dry eyes.

It's actually what Restasis was made for-- the dry eyes complicated by autoimmune diseases--Sjorgens, arthritis, diabetes, Lupus,etc.

I know it is so very frustrating when our docs want to stay old school, with those of us that need them to be progessive. Aaargh!

Take care,

Tracie