new dry eye discussion

[ronaldo1]

Elyse,

I am so sorry to hear that your eyes are causing you so much grief (what else is new!). I cannot believe what you are going through and I can only sympathise and tell you that you are so much stronger than I could ever be, even at 35 years of age. I definately know that I would not have ben able to handle even a little of what you have been through at such a young age. I sincerely hope that Dr O'Brien can come up with a new idea. My eye doctor told me that he has done some clinical trials on a new eye cream which contains male hormones. If it is anything like restasis, it will be available in the US before Australia, I am sure. Maybe Dr O'Brien may be able to shed some more light on what it is and when it may become available. It might be another option anyway.

I cannot believe how much the Avonex costs. How is the average person expected to pay for all these expensive medications? It is really unfair that it is not subsidised by the government to reduce the burden on people that are reliant on it to control their symptoms. How did you cope with giving yourself the injection? I know that when I first had to use eyedrops and clean my eyelids, I found it very awkward, but over time, it has become so much easier and almot second nature with so much practice. I am sure it will be the same with your injections. Have you had a spinal tap? If not, how was the diagnosis confirmed and can they tell what form the MS will take (I believe there are 4 different types).

I went to see a neurologist, when my MRI showed the brain lesions and he said that they did not appear to be the same type of lesions as MS lesions. He also did a stack of tests on me like reflexes, balance, co-ordination and I managed to pass these. He also said that he would show the best radiolosit in Australia, my MRI scan and he confirmed that I did not have anything to worry about. But sometimes, you d still wonder if the got it wrong.

The restasis does seem to be making a minor difference to my eyes, especially the right one. They stil feel dry at times and my eyelids still look red. I have been on the drops for about 4 weeks now and hope that it gets better. My left eye is still worse than my right. I am seeing my eye doctor on 20th Jan, and I am sure I will have a schirmers tests then (yuk).

I also stopped taking the doxy after speaking to my family doctor as I am sure, it was contributing to my throat irritation and lump sensation. The doctor has referred me to the gastro specialist, so I may have to have an endoscopy to see why I am having acid reflux etc. More tests....they seem to be neer ending.

Kay, good to hear from you . Sorry to hear that you have also been feeling so bad. Hope things improve soon.
Christine

[purple2067]

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 amount 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!!!!

[ronaldo1]

Hi Elyse,

Happy New Year! Some good news at last. Glad to hear that you have sorted out your insurance. It must be a load of your mind, not worrying about how to pay for all the medications.

Sorry to hear that your eyes are so bad, but thankfully there is something new on the horizon that with fingers crossed, will help you feel better. Thank heavens for all those wonderful people that develop these drops for people like us. Imagine if there were no drops at all!!! Well having said that Restasis was helping, I might have spoke too soon. Yesterday, I had a very bad day with my left eye (again that time of the month) and my eye felt like the desert. Bit I scrubbed my oil gland pretty rigourouly last night and today, it is a little better. However while my eyes have improved since yesterday, my stomach problems have again flared up. I think I may have to have a colonoscopy and an endoscopy to see what is going on. Have you had either of these before? I suspect that I have some inflammatory thing going on in my bowels as well....maybe celiac's disease as I have tested above normal ranges for the celiac antibodies about 15 months ago. I am seeing the gastro guy on 30th Jan.

You sound like you are handling the injections well. Have you noticed any difference yet, or does it take some time? Hopefully, it will halt the progress of the MS in the early stages.

Here here, to a healthier 2004. Hopefully in another 12 months, we will have other good things on my mind instead of health issues.

Take care
Christine

[purple2067]

Hi Christine!
Happy New Year to you too! The good news is that I didn't end up in the hospital on New Years Day like I did last year! So maybe this year will be better after all!

I have had both a colonoscopy and an endoscopy. An endoscopy is no big deal. You just don't eat after midnight on the day of the test, you go in and they sedate you and put the tube down your throat. A colonoscopy is has a much more difficult prep. You can't have solid foods for a full 24 hours before the test, nor can you have anything red or purple (such as grape juice or red jell-o)). The doctor's office will give you the stuff that you need to use to cleanse your bowels. You take it at the directed intervals and you are in the bathroom for a few hours until the last dose has run it's course. Then you go in and they sedate you and stick the tube up, well, up the other end. It's not fun, but it's not terrible. Go to the digestive disorders board to find out more.

One thing to remember is that when they sedate you for the tests (MAKE THEM SEDATE YOU!!!!!!), you need to put the ointment in your eyes as if you were going to sleep at night, if you put tears ointment in at night. My eyes are always very dry when I wake up if I nap without putting tears ointment in. When I had my gallbladder surgery I put it in before they wheeled me into the O.R.

My eyes are not feeling so good. They are very dry and mucousy. Lots of green mucus was coming out of my left eye the other day and I got worried about pink eye. But I don't have it. However, my doctor did tell me that if I continue to see the green mucus to use an anti-biotic drop for a few days. I just wish they would leave me alone for once! Let me have one good day! I can't wait until they come out with the new drops, although I honestly don't have any faith in them. I hope the Restasis continues to work for you. Don't let one bad day make you give up on it. I wonder if the new drops that are coming out in the spring will ever be made available in Australia. Or will you have to jump through the same hoops that you did with Restasis? Will the government allow you to stay on it forever if the doctor can prove that it helps you? Or is there a time limit? Are you only allowed to have it for lets say, a year?

By the way, I saw the Australian Idol, Guy Sebastian on World Idol. I thought he was pretty good! Did you see that?

Have a good weekend,
Elyse

P.S. The MS injections take some time to start working. I actually lost my balance and fell last week and banged up my knee pretty badly. I can't walk too well!!

[ronaldo1]

Hi Elyse,

Sorry to hear about your knee. Hope that it has improved since your post and also your sense of balance has returned. How long is it until the MS drugs start working? It sounds a bit like the Restasis. Does it also have a cumulative effect in the body over time?

Yes, I saw World Idol and think that Guy is great, however it was disappointing that the rest of the world did not agree. Kelly was awesome and I thoight that she should have won. American Idol 3 is about to be shown here at the end of january.

Well I have been away for a week up the coast and my allergy to the sun, resulted in a major flare up on both my hands and arms with a giant red itchy rash appearing, even though I used plenty of sun screen and wore a sun shirt (up to my elbows). I could have scratched my skin off, it was so itchy. Nothing really helps to ease it other than time out of the sun. Sort of put a dampener on the holiday a little for me, however the rest of the family had a great time. I hear that it is absolutely freezing in the eastern states.....hope you are keeping rugged up and warm.

My eyes are feeling OK, although yesterday, my left eye was bothering me. I do not seem to have the same problems with the mucous etc. The only stuff tht ever comes out of my eyes is the residue from all the gels and drops. I think that the new creams and drops will eventually be available here and it will probably be the same as Restasis as they will be unregistered and untested initially. With the restasis, the doctor has to justify every six months that the drop are helping before we are allowed to have another six months supply shipped in from the US....great huh!!

The colonoscopy sounds like fun! Actually I really need to have one as I have been having ongoing problems and need to make sure that whatever is going on with both my stomach and bowels is not too sinister. Thanks for the tip on the eye drops as well. I would not have thought about that.
Catch you later and take greate care
Christine