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  • Anonymous
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    Post count: 93172

    Here’s my burning question:
    My endo and eye doc feel that I need to try to “stop” the activity going on with my TED. They have recommended 3 courses of treatment – only one of which I have actually been able to find any research on.
    1. High dosage of oral steroids – prednisone – 80 mg/day
    2. Intravenous steroid treatments – every other day for 3 days; 2 hours per treatment
    3. Cytoxan – given to folks with cancer and autoimmune diseases

    I tried treatment #1 for 6 days – ended up not being able to tolerate the high dosage–had trouble going to the bathroom, profuse night sweats, and other “swell” side effects. The eye doc did see a decrease in the orbital protrusion, but not much else.

    I am being sent to a rheumatoidologist in 2 weeks for the cytoxan treatment.
    Bottom line is that I really don’t want to be the guinea pig, test child for TED, no matter how noble it may sound.

    Can anyone shed any light on these treatments?

    Lisa in Omaha

    Anonymous
    Participant
    Post count: 93172

    Hi, LIsa, and welcome to the board.

    I had not heard of the cytoxin treatment, so I cannot help there.

    Typically, our doctors do not recommend intervention with the eye disease unless there is, in their minds, a threat to the optic nerve. As the eye muscles swell, they can crunch the optic nerve (“compress”), and this can — at its most serious — cause blindness. Not everyone gets to that point, in fact most of us do not. But the steroid treatment is designed to inhibit the inflammatory response that causes the eye muscles to swell.

    And, yes, there ARE serious side effects to taking the steroids — especially for women. What needs to be weighed is not whether there are side effects at this point but what is the likelihood of a problem with your optic nerve(?), can you afford to wait(?), are there symptoms you could monitor instead of doing the drugs(?). It might be that you need to take the drug through at least part of your “hot phase” to save your sight. That tends to put the side effects into a better perspective. But if your doctor is just being proactive, and you do not need to take the steroids right now, you need to know that, too.

    You can ask your doctor to provide you with research — either hard copies or links to online medical sources — that describe the use of cytoxin for the eye disease, too. There are also online and hard copy drug reference manuals that can give you an idea of what you are dealing with in terms of side effects there.

    Your own doctor is your best source of information/advice about these issues. And you are certainly entitled to getting a referral for a second opinion, given the seriousness of the disease and the treatment options. People online are not as good a source of advice.

    Eventually, there is a surgery that can correct for problems caused by the eye muscle swelling. It is called “decompression” surgery. But doctors do not like to do that until the hot phase is over because after the hot phase, there is a remission of symptoms. No, our eyes do not go back to pre-disease ‘normal’ if we have had significant eye disease. But things can moderate enough that if the doctors do surgery too soon, they might need to do additional surgeries to fix what they did in the first surgery. (I don’t know if I’m expressing this very well.)

    Wishing you well,
    Bobbi — NGDF Online Facilitator

    Anonymous
    Participant
    Post count: 93172

    Cytotoxins?

    I recall this being discussed under chemo for treatment of TED. Try a search on “chemo and TED” to see what comes up.

    Some folks who could not tolerate the steroids have had mixed results with chemo and immu-suppresents.

    I will try to remember with my Graves’ brain, where I read or heard about this…

    Jake George
    On-line Facilitator
    Co-Author “Graves’ Disease In Our Own Words”

    Anonymous
    Participant
    Post count: 93172

    Hi Bobbi-
    So far, I have been to two different ophthalmologists and my optic nerve is in tact. I’m not sure what you mean by decompression surgery. I was told that I might have to have surgery later on (in the non-active stage) to correct the swollen muscle so my eye doesn’t look “frozen.”

    Lisa

    Anonymous
    Participant
    Post count: 93172

    You could run a search of the archives about the different surgeries for the eye disease. Jake wrote one, long ago, that is kind of a basic primer on them. I think he called it “Surgery 101” or something like that. There are several different types of surgeries that can be suggested to repair the damage done by the eye disease.

    Each eye sits in a bowl of bone (called a socket). When the eye muscles enlarge with TED, they can, in some cases, fill that bowl of bone compressing the optic nerve. When the muscles enlarge they also push the eyes forward, out of the socket. Decompression surgery removes some of the bone in the socket, allowing more freedom of movement of the enlarged eye muscles, and allowing the eyes to drop back inside the head.

    Bobbi – NGDF Online Facilitator

    Anonymous
    Participant
    Post count: 93172

    Dear Bobbie, Lisa, and Jake,
    Hope all of you are doing as well as can be expected in your stage of TED. I was just diagnosed with this in June, 2006. At first, only my left eye was affected, but about 2 months ago my right eye began to swell, etc. I was seen last week at our Eye Institute in Milwaukee (which is affliated with the Medical College of Wisconsin.), I was very impressed with the opthalmologist, who is a specialist in disease which affect the orbits of the eyes. He prescribed Restasis treatment, which he stated should treat the cause of my symptoms ppp although he stated the results wouldn’t be known for about 3 months.
    He described my condition as mild to moderately severe.
    Have any of you heard of the Restasis treatment? One of the ingredients is Cyclosporin (a very low dose). I believe this is a relatively new treatment. He wants to see me again in 6 weeks. Today is one of my “bad eye days”. My last TSH level was normal — I believe it was 2.2. I feel very self conscious re my appearance and wish I could wear dark sun glasses all the time. Thanks to those who posted info on eye makeup techniques. Any comments, etc. that you have would be most welcome and appreciated. Nina

    Anonymous
    Participant
    Post count: 93172

    Hi Jake and my fellow TED patients,
    Hope we all have some “good eye days” in the midst of the “bad eye days”. To try to make light of my eye condition, I tell people I’m having a “bad eye day”, along, sometimes, with a “bad hair day”. I have a question I’m hopeful to get a response on. I was recently seen by an eye specialisht at the Medical College of Wisconsin — he was very thorough and understanding. He did start me on a Resistasis regime, which he stated has been shown to be effective in some cases, although it may take up to 3 months of treatment before improvement is noted. It’s a Cyclosporin derivative and is an eye drop which is instilled in each eye twice a day. Also, I’m on a very low dose of Tapazole 5.0 mg q day, but I fear that this has, in part, caused me to gain about 8 pounds since starting on it 2 months ago. Have others found the same side effect. Any advice, etc. you would have would be greatly appreciated. Thanks, Nina

    Anonymous
    Participant
    Post count: 93172

    Weight gain is not a “side effect” of the drug you are on. It is, however, a possibility as we move towards normal levels of thyroid hormone again.

    While we are hyperthyroid, we can lose muscle mass, especially in the large muscles of the legs, arms, chest. This is one of the reasons why hyperthyroid people become emaciated: it isn’t just weight loss, it is muscle loss. Muscle weighs more than other tissues, so losing muscle can appear as weight loss. It is very bad weight loss, however, because muscle burns more calories, even at rest, than other tissues, so its presence raises metabolism. In other words, with muscle present, we can eat more without gaining weight.

    As we return to normal, controlled levels of thyroid hormone, muscle starts to return. This appears as weight gain. We can also gain weight because we are eating too much, relative to what our metabolism is with the lost muscle, until the muscle returns.

    But at this point in time, you need to be tremendously concerned about “nutrition,” not weight. Yes, your weight can fluctuate. Insofar as you avoid foods that have “empty calories”, and eat foods which provide your ailing body with nutrients, you will become healthy faster, with a minimum of unwanted weight gain.

    Bobbi — NGDF Online Facilitator

    Anonymous
    Participant
    Post count: 93172

    My neuro-optholmologist (highly recommended in a teaching hospital in major city) watched my eyes closely for 3 months. My Endocrinologist told me to take 20mg a day of Prednisone for about 6 weeks following RAI. My neuro-opthol. disagreed and said it would take 80-100 mg for several months for that to be effective and it was his opinion that the side effects were not worth it. I should have listened to him. I puffed up like an ol’ toad and gained 44 lbs.

    About 6 weeks after RAI, my neuro-opth. ordered 10 radiation treatments (about the strength of 3 x-rays taken 1-1/2 mins. each eye) targeting the muscles behind the eye. These were done Mon-Fri for 2 weeks. That killed the anti-bodies that were attacking my eye muscles. After 2 months, he was able to do eyelid retraction surgery -remove the excess fat above my eyelids and tighten my lids so they would close all the way. I don’t have to use drops anymore and my vision is great. No more double or blurred vision. I cannot say this would work for you, but I would ask the questions….Joy in SoGA

    Anonymous
    Participant
    Post count: 93172

    Hi Joy and Bobbi,
    Thanks much for your messages. I didn’t realize there were neuro-opthalmologists. I feel more comfortable now that I’m under the care of an opthalmologist who specializes in orbital conditions of the eye. My next appointment with him is later in February. At that time I hope to learn more what his future treatment plan is for me. I’m having difficulty tolerating the Restasis treatment because of the severe burning caused by these eye drops. I must admit to being apprehensive re what course my disease might take, but feel certain this anxiety is normal. I didn’t mean to sound overly concerned re my weight gain, Bobbi, as i know other things are more important right now. My goal is to try to eat sensibly, exercise more, etc. My endocrinologist doesn’t believe RAI would help me, but I will inquire again re this when I see him in March. At least the RAI would, I believe, prevent serious systemic complications relating to the heart and lungs. I do have mild emphysema and sometimes I am more short of breath just doing normal activities. What would your thought be re seeking a second opinion from another endocrinologist? Thanks. Nina

    Anonymous
    Participant
    Post count: 93172

    Getting a second opinion is always an option — no matter what the physical problem. There are judgment calls involved with treatment advice given to us by doctors. There is not necessarily any absolute with some patients, so there can be differences of opinion between doctors as they weigh the pros and cons of any specific treatment.

    Whether or not you seek the second opinion, it would probably help you to sit down with your current doctor, explain what you mean by avoiding systemic complications with heart and lung, and get an answer. It could well be that something you are assuming is not quite right — or that there is an aspect to the RAI that you are unaware of, that the doctor thinks is more dangerous to your situation than the drugs you are on. Establishing a dialogue, so that you and your doctor understand one another well, is often key to finding the best treatment options.

    Good luck, and I hope your eyes are better soon.
    Bobbi — NGDF Online Facilitator

    Anonymous
    Participant
    Post count: 93172

    Nina, I just had a second opinion from another Endocrinologist, because like you I was questioning what the first one told me. I think that if you walk out of a doctor’s office wondering whether or not what you were told is accurate, then you probably don’t have complete confidence in that doctor.
    For me , getting a second opinion, either confirms what the first doctor told you so that you feel better about the information, or it gives you further options. In my case, the diagnosis was different , and much more towards what I was feeling about where I was on this journey. I did my research to find out who was the best in town, and even though she had a closed practice, was able to work through my internist to get me an appointment and I am so glad I did. Good luck to you on your journey.

    Anonymous
    Participant
    Post count: 93172

    Hello fellow TED patients. Thank you all very much for your postings. I find them very informative and, in many respects, reassuring. I’m still obviously in the “hot phase” of this disease. My last TSH level was only .07 which was a drop from 2.2 3 months ago. The endocrinologist didn’t increase my Tapazole dose — I’m taking 5 mgm a day. I try to use the Restasis drop daily, but, when I do, the eye discomfort is almost unbearable. I will discuss this treatment with the eye MD when I see him later next week. Some days I do have double vision — especially when I’m tired or under a great deal of stress. I have 4 pair of glasses — one regular pair, one with transitional lenses, prescription sun glasses, and over the counter sun glasses. Psychologically, I feel the most comfortable with the dark sunglasses, but then can’t read or drive. I do still work part time in an office — I just turned 66 years old– and want to keep working. Thus far my vision hasn’t worsened to the point that I can’t see well enough to work. What one book would others recommend on TED and Graves Disease? I don’t seem to have any generalized symptoms of Graves — just my eye changes. I’d like to start a support group here in Milwaukee for patients with Graves’, but am not quite sure how to do this. Any thoughts you might have would be appreciated. Thanks for reading this lengthy message. Nina

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