[brawson]

#1058839

Has anyone used rituximab as a treatment for their TED? My doctor is offering it as an option and I am unsure. It is used primarily for lymphoma and also for rheumatoid arthritis. There is limited research on Graves and it isn’t FDA approved for Graves yet.

Also, What does daily stress do influence the progression of this disease?

I have been dealing with thyroid eye disease and trying to cope alone. My thyroid symptoms go back to 2009. It is really hard as you watch these changes and feel helpless to do anything. I am typically stoic and don’t like to complain. My appearance has made me avoid pictures and events. I work in a very high stress job and I feel it is contributing to my disease or at least the progression of it. I am a Middle School Vice Principal and every day, things come at me and I need to solve them. I have informed my HR dept that I will not return to this position next year but am trying to ride this year out. I fear that my job is making my condition worse. My question is how influential in the healing of this disease is stress?

My story:

I went to the doctor with swollen eyelids in Feb of 2009. I initially thought I had allergies to a new face wash I was using. It did not go away and my GP recommended the blood tests and referred me to an endocrinologist.

The endocrinologist also had me see an opthamologist to get a check up and some measurements. There was some bugging and I was glad to get some baseline data.

I was scheduled for foot surgery for arthritis and was very anxious to correct the discomfort in my foot (and I had a planned hike on Mt Whitney) so she said the best thing to do would be RAI. She mentioned that the surgery would not be allowed if the thyroid was not in check due to possible thyroid storm. The quickest resolution to my hyperthyroid would be RAI. I had the RAI in April and hoped to be able to have the surgery that summer. I went hypo in June. What a roller coaster ride that was. From less than .05 to 57.52 in one month. I felt like a slug. I couldn’t walk through a store without seeking a chair to sit down. I was beating myself up because I am an active person and I was gaining weight and tired all the time. I had the surgery in August.

I did well the next year and made the hike up Mt.Whitney in July of 2010. That fall, I was diagnosed with an ovarian tumor and had major surgery including a hysterectomy. It was of low malignant potential and the subsequent check ups have been good. I am sure the stress of that had an influence on what was to come. I lost the extra weight and was feeling on top of the world.

In January 2011, I started having the double vision. The endocrinologist wanted me to see the opthamologist again. The one that took my earlier measurements before had retired. The new one made measurements and said I was better than the last measurement and that the double vision was a sign of age. (I was 58 and post RAI) When he measured me, it felt like he was pushing in really hard because it hurt so much and it wasn’t like that the first time. He said I should get prism glasses. I insisted that it was Graves and that he refer me to a neuro-opthamologist. When I was checked by the neuro-opthamologist, he confirmed the TED diagnosis.

Many blood tests were taken. The TSI was 563 which he said was the highest he had encountered. The numbers mean’t nothing to me because I had no reference as I couldn’t determine what was normal. At this point it was a wait and see for the active phase to subside. My eyes have become very bulging this past year and two infusions of corticosteroids have not helped that. The TSI has gone down to 454 in November 2011 and this January 2012 it is 335. I think that must be good. The doctor is suggesting that I might try ritumux, a drug used for lymphoma, to see if the eyes will recede some. This drug kills the B cells that are making the antibodies. I am hesitant to do this for fear of infection.

The discomfort due to the eyelid retraction is at times excruciating. My husband feels so helpless to comfort me. I use Restasis 2X a day and hourly Celluvisc gel drops. My job requires me to supervise students outside everyday and the sun and wind is so painful. I find driving very difficult and I have actually screamed because the lights coming at me make my eyes hurt or the sun is shining on my eyes. I demanded to see the doctor to ask if my cornea was damaged because the burning and photosensitivity were so bad. He said to use more drops. I tape my eyes shut at night and I hate removing it in the morning. The doctor ordered a CT scan and said that if we need to do Orbital Decompression, it would be helpful to have it. I think he just wanted me to think something was being done. My TSH was low so my dosage of levothroid is being modified so I hope I feel better. I hate that this disease has taken over my life. I am anxious about the possibility of surgeries on my eyes and what that will be like.

As I mentioned, I have a very stressful job as Vice Principal and plan to go back to teaching next year. It is not without stress but more predictable. I have never been on a forum or shared this but I am at a crossroads with this disease and my lifestyle changes to adapt for it. The psychological toll of this disease is huge and there is no one treating that. I fear for surgeries, hate the side effects of the steroids, hate to look in the mirror, am angry that I can’t enjoy the outside due to photosensitivity, hate the burning and painful eyes, feel like I have to keep it all in because otherwise I would always be complaining as it is so consuming.

Well, for my first post, I surely let it out.

Barbara

[Kimberly]

#1170331

Hello and welcome!

Hopefully, you will get some responses on the Rituximab issue. My understanding is that this is generally reserved for patients with moderate-to-severe eye disease who are not responsive to steroid therapy. Here is some info from a small study from a couple of years ago.

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.thyroid.org/professionals/publications/clinthy/volume22/issue7/clinthy_v227_12_14.pdf

Although I haven’t seen any specific studies on stress and Graves’, stress *is* believed to be a trigger in the development of autoimmune disease in general. The current theory is that certain individuals are genetically predisposed to getting an autoimmune condition and then some “trigger” actually activates the disease. The trigger might be stress, a viral illness, something in the environment, or physical trauma. Personally, I can see a definite connection between major stress and having my hypER symptoms flare. You might do a search on this board for “stress”, as there have been quite a few posts dedicated specifically to this topic, and some members have shared their favorite stress-relieving activities.

On the issue being outdoors, I heard a presentation from a local eye doctor who recommended sunglasses from this company. I have not tried this personally; it might be worth asking your own eye doctor for an opinion. Definitely any type of sunglasses that fully wrap around would be helpful in the situation you are dealing with.

http://www.eyeeco.com/category/icategory_id/51/sunglasses.html

Take care!

[brawson]

#1170333

Thank you for the link on rituximab. All the studies I have read seem to be very limited in scope with only a small sample of patients. I have had two infusions of corticosteroids and it has not been effective in reducing the proptosis. The Dr. said he would not recommend another infusion of steroids because the solmedrol is strong medicine and hard on the body. I have to choose to try the rituximab or be more conservative and wait for the active phase to pass and see if my eyes recede on their own. Decisions like this are part of the challenge of this disease.

I ordered the sunglasses from eyeco today. I am hoping they can be worn over my glasses since my double vision is significant and I can’t be without my prisms.

This forum has been such a help for me. I have been going it alone too long. It’s good to know how others are dealing with it.

Thanks,
Barbara

[snelsen]

#1170332

Quick note. I TOTALLY understand everything you said. If you read ANY of my posts, you will see my history of TED at the bottom, plus a lot I have written about it. I am too tired to write to night. I need to (yes, that’s me) tape my eyes so that I might get a little sleep. I wear sunglasses everywhere I go. I can talk about methotrexate, Rituxin, and all the rest of it….
Maybe I can get to the computer tomorrow afternoon. I will also send a PM (personal message to you)
Shirley

[snelsen]

#1170334

Hi, I wanted to tell you that I tape my eyes, too. I am going to type just a few random thoughts, cause the past day and next few days are crazy for me.
I had double vision, too. Please don’t fear the surgery for double vision!! Look forward to it with great happiness. It was wonderful, easy, and I now have single vision. It is called strabismus surgery. Thyroid eye disease goes through an active phase, where eyes are changing, then an inactive phase, that is when you can have corrective surgery for the double vision

I am very light sensitive too. Sunglasses, plus a large visor really help. the glare of the sun, or even bright light, makes my eyes water. With this dumb disease, our tears re different, so they don’t cling to our eyes like they should.

There a really good tape that is expensive, call Mepitac, for eyelids. I ordered some. I hope someday, not to have retracted lids. Most people have very successful surgery for that. Mine has not been as successful as hoped, but I plan to have them fixed with future surgeries.

This is a personal thing but I wish I HAD taken Rituximab. You have done the right research on it, yes, it is still at the beginning, but if i had it to do over again, or could do it now (too late for me) I would. As I said, that is just me. I had methytrexate, which did not help at all. Also had Solu Medro IV
There is a doc at Casey Eye Clinic in Portland who has given it to some patients. As you said, the studies are very small at this point.

I just have to go to bed, but wanted to acknowledge your post, and I said I would write again. Probably won’t hear from me again until Saturday afternoon This is my birthday week, and getting crazier by the minute. Off to bed to tape my eyes!!!
shirley

[Author]

Posts