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Christine,
I am glad to hear that you think the Restasis may be helping you. Keep in mind that it may take up to 6 months to achieve its full potential. I absolutely hate getting schirmer tests. Neither my regular eye doctor nor Dr. O'Brien do them on me. My problem is not so much with the [I]amount[/I] of tears, but more with the quality.

Kay, good to hear from you again! I was wondering what happened to you!

My eyes have been just awful lately. My left eye is really really bad. It is bothering me terribly. It has been red and itchy and a little puffy today. If it is still like that when I wake up in the morning I may go for a quick checkup at the eye doctor, because I'm concerned about pink eye and tomorrow is New Year's Eve, so nobody will be in the office until probably friday.

I absolutely cannot wait to go lay down with a nice cold compress tonight.

I saw Dr. O'Brien on December 22nd. He agreed that my eyes look just awful. He said they are not quite as awful as they were in January, but still awful. He agrees that I cannot use Restasis.

It is interesting that you should mention a hormone drop. Dr. O'Brien said that there are two new drops coming out in the spring. One is called Diquafosol. It is supposed to affect the mucin layer of the tears, therefore helping people with poor tear quality. The other one is an androgen drop, that contains hormones. I will return to Dr. O'Brien in the spring, probably around March or April, and we will decide then which of these drops will benefit me the most. (hopefully both will be available by then.) Dr. O'Brien will help my doctor and I decide what to use, and then my Dr. will do the follow up.

In the meantime, I am absolutely miserable. I feel like my eyes can't get any drier than they are right now. They are unbelievably itchy. Dr. O'Brien is allowing me to use the dexamethasone (steroid) ointment twice a week at bedtime. He wants to see what minimal use will do. He's hoping it will keep my inflammation at bay so that I can function, but not make my intra-ocular pressure go up.

I did not have too many bad side effects from the Avonex. I didn't have a problem injecting myself, once the nurse showed me how. It's easy. The sight of that huge needle freaks me out, but I'm getting used to it!

The good news is that I applied for new insurance this week. For right now I have insurance that I have to pay for, and it is not that good. It does not cover doctore visits, and it only covers up to $5000 in prescriptions each year (which considering the cost of Avonex, would only take me until about April!). I went over to one of the local hospitals and they had a woman there from HealthFirst. HealthFirst is free insurance for people who are still students and don't make enough money and cannot afford to pay for decent health insurance. It covers EVERYTHING with no copayments and unlimited prescription coverage. It is subsidized by the government. But the bad thing is that not every doctor accepts it. I don't think my eye doctor does, and I am not about to stop going to him. So I'll pay him out of pocket (if he'll allow me to pay him at all!) They are 99% sure that I will be able to get this insurance. At least I won't have to worry about that anymore.

I'm so mad right now though. I went out yesterday and I lost the make-up case that I use to carry my eyedrops. It had a few vials of tears in it, which is really nothing. But it had a brand new bottle of gel drops, worth about $15, and an almost full bottle of Betimol drops, worth a lot more than $15!!!! It also had my mirror in it and a little notebook. I searched both cars and even called the TGIFridays Restaurant that we went to and asked if anyone found it. I'll have to search the cars again tomorrow and double check all the rooms in the house, but I think it's gone. Luckily though, I have another bottle of gel drops, which is all I really cared about anyway!!!

On that note, I think I will go put in some of those gel drops!!

Happy new year everyone!!!! Lets all be healthier in 2004!!!! :bouncing:
Hi Elyse,

I have been thinking about you, but physically getting myself to the computer at home has not been very easy. I have a number of problems that are really weighing on my mid and making me very pre-occupied and stressed, which leaves very little energy for much else. Anyway, how is that knee of yours? I hope that you have mde a full recovery.

How are your eyes? I hope that the pink eye has improved and that you are getting some relief. I saw my eye doctor a week ago and he stained my eyes and told me that the blepharitis has improved (I should hope so after being on antibiotics for nealry 18 months straight) and that the inflammation in my eyes had also reduced from the retasis. So I guess that this is good news. I felt better when I was taking both the restasis and the antibiotics, but I am glad to be off the doxy as I am sure it was causing havoc to my throat. I am still using eye gels duirng the day and ointment at night but not as much anymore . Also that blocked oil gland that I used to get scratching against my left eye every two weeks or so, has also reduced.

Unfortunately, I am not having luck in the gastro department with ongoing attacks of cramping, spams etc. I agreed to have both an endoscopy and colonoscopy done at the same time on 26th Feb - cannot wait for that one. Thank goodness they will sedate me.

I have read that allergy to the sun can often be the first sign of lupus - well inflammatory feelings in my gastro tract, inflammation in the eyes and skin inflammation all sound very much like lupus, but as usual, different doctors treat their bit and no one puts the whole picture together......

Anyway, I will keep you posted on the outcomes and please do the same.
All the best
Christine

PS: American Idol 3 has started here and the initial auditions are pretty funny. Some people cannot sing for anything!!
Christine, it is so nice to hear from you!

I'm glad you are doing well! :) As for me, my eyes are still just as crappy as the last time we spoke. I've been getting a lot of conjunctivitis. Being around children, I am constantly exposed to germs. I've probably had it 2 or 3 times over the last 4-5 months. I feel like I have it again now, but I was at the eye doctor less than a week ago and he said no. I still see my local doctor once every two-three weeks, because of the pink eye and bad allergies I am experiencing. I am trying some allergy drops, with little success. :( But mostly I'm still just using the Bion Tears and Refresh Endura. I'm off of all the steroids because they were making my intra-ocular pressure go up. (if you do use the FML, make sure to get your IOP checked within the first 2-3 weeks that you are on it to make sure you're not a "steroid responder" and your pressure doesn't shoot up.) I'm using hot compresses once a day for the meibomitis, and cold compresses at other times for comfort and to reduce inflammation. I am also on doxycycline now.

The MS is giving me some problems, but I don't want to talk about that on the eye board. If you want to know how I've been doing with that, I posted a topic on the Multiple Sclerosis board called "I feel like I'm losing my mind". (that pretty much says it all, doesn't it?!!) I don't know if I told you, but way back in december I fell and hurt my knee. I went to the hospital and they took an x-ray but they said I was fine. Well, 2 months later I was still in agonizing pain, so I went to an orthopedic doctor. He said I might have fractured it and gave me some exercises to do. But I was getting worse. (my kneecap didn't want to stay where it was supposed to!) So he sent me for an MRI. It turns out that not only did I have a chip fracture (I chipped off a piece of the kneecap) but I also did tendon and muscle damage. It was a pretty bad injury, and should have been immobilized when it happened. So anyway, now I have to go for physical therapy, and I have to get a knee brace and continue to see the doctor. That's the latest health news! :(

Have you posted your digestive problems on the digestion board? I have bad reflux too. I've had it since I was 14. I see a GI doctor every few months. (He's also my primary care doctor.) I am on something called Aciphex, which works well for me. I'll be on it for the rest of my life too! But the BEST medicine that I ever took for my acid reflux was a chalky pill called Carafate. (sucralfate) When everything else fails, that works! It is supposed to heal ulcers, but it also worked GREAT for my acid reflux. Just something to think about if you don't get help from the other medicines.

OK, now back to eyes. I do know of something that will be coming out in the U.S. fairly soon. It is called Diquafosol, and it's made by Inspire Pharmaceuticals. It's an eyedrop that is supposed to increase the production of the oil and mucus layers of the tears. It was supposed to come out earlier this year, but the FDA (Food and Drug Administration) wants more studies. I contacted the company that makes it, and now they said that the earliest it will be coming out is 2006. :(

Aside from everything else, I am so glad to hear that your eyes are starting to get better! Keep in touch!

Elyse





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