Thyroid Eye Disease and Its Healing
“Rituximab appears to have a significant effect on thyroid eye disease that requires further randomized controlled studies”- this is what says a recent study about a new drug called Rituximab. Is Rituximab the new HOPE?
The information below is quoted from a recently conducted clinical trial on Thyroid Eye Disease with the following authors:
Silkiss RZ, Reier A, Coleman M, Lauer SA.Rituximab for Thyroid Eye Disease.Ophthal Plast Reconstr Surg 2010.DOI: 10.1097/IOP.0b013e3181c4dfde
Rituximab is an intravenously administered chimeric mouse-human monoclonal antibody that targets the CD20 antigen on pre-B and mature B lymphocytes.Hematopoietic stem cells, pro-B cells and normal plasma cells do not express the CD20 antigen, thus rituximab does not induce significant immunosuppression.The Food and Drug Administration approved rituximab in 1997 for the treatment of B-cell non-Hodgkin lymphoma, and in 2006 it was approved for the treatment of rheumatoid arthritis and is now being studied as a possible treatment for a number of other autoimmune diseases.Limited information has suggested that rituximab results in B cell depletion in the thyroid gland of patients with Graves’ disease, and a study of the decline in production of specific thyroid stimulating autoantibodies has been reported.
This is a prospective, open-label, interventional clinical trial study that reports the results of a phase I/II safety and efficacy trial of 12 patients treated with rituximab for TED and their 1-year posttreatment clinical course.
CONCLUSION
Twelve patients with active TED were treated with 2 courses of Rituximab over a 2-week period. There were no adverse effects of the Rituximab infusions and no reported side effects during 1year after the infusion of the drug. There was a significant improvement in CAS scores that was observed 1 month after infusion of Rituximab that was sustained throughout the 12-month observation period.
In conclusion, Rituximab appears to be a drug with promise, but requires larger prospective randomized studies to settle the differences reported in the literature.
I really hope that this can help the thousands of people suffering Thyroid Eye Disease, or Grave’s ophtalmopathy, when nothing else helped.
Feel free to share any experience or information you may have about similar studies.
For more information, check the Free Articles.
My Blog About Graves' Disease and Hyperthyroidism 
Posted by Umbalita on July 3, 2011 at 7:12 pm
Hi, I have been dealing with graves disease and hyperthyrodism for about 1 1/2 years now. I am confused about how to battle this disease. I am following the advice of my doctor in regard to taking my medication and having blood work done regularly. My sister sent me an email with your information which is well documented. It’s a lot of information and with my disease along with all that I’m dealing with, the information can become confusing at time. I could improve upon my diet and exercise routine. I plan on ordering your life manual this coming week. Since I am new to dealing with this disease, I look forward to communicating with you to learn more about the disease along with ways to cure the disease.
Posted by joyce Smith on July 10, 2011 at 6:30 pm
I hate this,I was up till 2:00 cleaning my aparment building hall ways.Then I woke up and could hardly move.Please help me to no what to do and what I should do so I can have peace of mind.
Posted by laura romo on July 29, 2011 at 4:48 am
I have been suffering with this for about 5 years, my eyes bulge and i look like a damn frog. I hate it. I have been trying the “eye exercises and honey remedy”, seems like it is working a bit, i have yet to try the flax seed oil, but am willing and ready to. I would like anybodys response to this to help me learn more about this darn disease.
Posted by Linda Cormack on August 30, 2011 at 11:24 am
Sorry to hear about your troubles. I was diagnosed with overactive thyroid January 2007. My eyes had stopped moving but the doctors ignored that and plunged straight in with RAI. Unfortunately this caused my eyes to really bulge to the point they were unfortunately about to fall out of my head. (I since read that if you have eye problems, RAI shouldn’t be given as it can make eyes worse) unfortunately in my case I heard about this too late. I was rushed into hospital several times for emergency surgery. The problems have been going on for years regarding my eyes etc. I then ended up having to have radiotherapy to take down the swelling behind my eyes, which then led to all sorts of problems. I am now left with severe double vision as they couldn’t align my eyes up due to the severity of my disease, my eye muscles were just breaking away. If you consider anything please read as much as you can about it before going ahead as my life has been ruined by this and the mistakes of doctors and surgeons.
my eyes up perfectly. They have tried squint surgery but due to the severity of my disease the muscles broke away when they were trying to fix it. Unfortunately all my useless doctors are at the end of the line
with me so I am now left to get on with it. I have to keep one eye covered at all times. I then developed Sjogrens Syndrome which dry’s the eyes so have major problems with that now
Posted by Danielle on September 5, 2011 at 2:07 am
I am so sorry about your eyes, I unfortunitly have diarea the worst case I can’t seen to find any one with this problem,if you know someone can you pass this along.
Thank you, so much
Danielle
R.S.V.P. dnovelle@yahoo.com or dnovelle@hotmail.com
Posted by Carla Bottle on September 24, 2013 at 5:33 pm
Laura Try a Selenium supplement 200mcg daily for the thyroid eye disease.
Danielle Try going gluten free, it often helps with diarhorea
Posted by Danielle on August 2, 2011 at 1:56 am
What do you do with the honey? I have just started to get on this site and I have started to take the flax seed oil ,descusting tasting. I have had this disease for maybe 10 years. my legs are so week I can hardly get out of the car unless i get two legs out and I can push myself up.
My sympathy for you I hope you get the help you are looking for I live in St Petersburg, FL.
Posted by Sharon Levin on August 28, 2011 at 7:36 am
Rituximab not the answer – in test trial that I was so happy to be part of in the hope this would assist with photophobia and ocular pain, it did not, sometimes, makes the pain more intollerable. Others in trial – only 1 person had relief out of 10 in Johannesburg South Africa. A real shame that we are getting nowhere slowly… Sharon Levin Head of Fibromyalgia Support Network and Eye Graves Disease sufferer many yrs. http://www.fibromaalgiasa.co.za
Posted by julie on August 30, 2011 at 12:37 am
Danielle, I sypathize with you. Did you know you can get flax oil in liguid gel pills..waybetter! Also, I find that high doses of sublingual b-12 help my eyes with the painful and dry feelings. I have had GD since’09, and am manageing without meds. I see a naturpathic dr., and take homeopathicsand supplements. Hang in there! Be well, Julie
Posted by heather on September 15, 2011 at 7:12 pm
I have had Hyperthyroidism on and off for about 2 yrs. Thankfully it went away while I was pregnant with my daughter, and about 7 months after while i was nursing. Now it’s back, worse than the first time I had it.. I read your comment, this time I have severe muscle weakness, I can barely pick up my 2 yr old… I am getting ready to start treatment, and was just wondering, does the muscle strength even return?? I know I am luckier than some of the others that have this disease, but this is the worst thing for me, being that I have small children to take care of!!!
Posted by Kathy on August 29, 2011 at 9:25 pm
I have multinodular goitre and 25years ago had a lump removed from my thyroid, and its now grown again and and enlarged further over the last 4years, I have parotid glands dysfunction and was pushed to have RAI , I declined as the first take up is the glands, I was told that it did not until I researched, I have very little saliva and problems eating with dry swallowing, my test were normal , but a big goitre which is uncomfortable and affects swallowing even more as well as pressing on nerves making my neck and left shoulder and arm aching, because it would be second time surgery I am told its risky, so I suffer palpitations with headaches and am left to get on with it being checked once a year, biopsy done 4years ago,
h.blower278@btinternet.com
Posted by Erik on September 4, 2011 at 9:55 pm
Hi, I am a 22 year old male. I use to struggle with being overweight for the past 7 years. I finally decided to run every day for 7 miles and take B vitamin and zinc suppliments daily. I started losing weight and it was great, but then I started to lose too much weight. By June, I was losing 1-2 pounds a day. I lost 10 pounds in one week and still am slightly losing weight. The weight loss stoped for a while in July- early august, but it started all over again in late August (i lost 3 pounds this week alone). I am almost underweight and don’t know whats going on with me. I did get a TSH test done in June and it was normal (2.2). The doctor did notice that my calcium levels were elevated though and she said that it could mean the beggining of hyperthyroidism. Here are my symptoms; 1. my eyes bother me 2. I get a funny feeling in my lower neck. 3. I can’t stand the heat. 4. I get sweats early in the morning. 5. I always feel like I have energy that I have to burn off. 6. my feet get numb easily. 7. I have a hard time getting cold (even when my hands are ice cold). 8. weight loss. 9. I am ALWAYS hungry. 10. I crave foods that i never craved before (sweets). 11. I am always thirsty. 12. I get heat flashes after I exercise (go out jogging). 13. I get angry more easily. I have a lot of symptoms and I don’t know if it is hyperthyroidism. I also heard that over exercise or consuming too much zinc can lead to hyperthyoidism. Can someone help me here.
Posted by heather on September 15, 2011 at 7:27 pm
HI, I am a 25 yr female. I have had hyperthyroidism on and off for 17 months. I found out i had it bc of my weight loss. I am smaller anyways, but I got down to 90lbs. shortly after finding the resaon I found out I was pregnant.. during my pregnancy however I was FINE!!!! No symptoms at all!!! So my question to all of you is, I know its pretty much a hormone problem, so can we fake out my body by making it think that I am pregnant?? Like I know they can stop your body from making the pregnancy hormones (abortion pill) so can they give us that certain hormone to make it like I am pregnant????? This would be soooo much better if no actual drugs, side effects, raidiation , etc…. I dont have an appt until a few weeks..
Posted by trelokomeio on September 23, 2011 at 6:05 am
is it diabetes? this thirst and hunger sounds more like it plus the loss of weight too and the agry feeling… good luck and god bless
Posted by Marilyn on December 11, 2011 at 1:21 am
I don’t take meds for my hyperthyroid. Instead I take L-Carnitine (fumerate form) which is a dietary supplement that taken in high doses such as 2000 to 3000 mg per day will work in the same manner as methimazole without all the side affects.
Posted by Kelly Fernandez on January 25, 2012 at 2:13 am
I myself having hoshimotos under active thyroid.for 15 years, came down with severe thyroid eye disease. My doctor.was very aggressive with his treatment for.me which.of course was.IV pulse.steroids and oral.steroids. Dr Thomas Joly was my doctor, surgeon and savior. He wanted me so badly to try the rituxin, I was to scared and didn’t even after my.health insurance would cover the very expensive infusions. I’m very disappointed with my decision now as I would love to help others with this truly deforming, painful disease.
Posted by Ellen Maxson on February 1, 2012 at 4:18 pm
I just found this site as my hyperthyroidism has been re-activated after 3 years of being perfect. When I had it previously , I really enjoyed losing the weight and having the energy- UNTIL a doctor told me it really chews up your bones. Well, I was wondering why my bone densitometry showed some quick decline. The way I cured it previously was with herbs. Since I have a background in Herbal Medicine, I began my research and found that Bugleweed and Motherwort in combination were the balancing agents for hyperthyroid. I found a website called http://www.nativeremedies.com which has a great product called Thyrosoothe. I took it for 6 mos. 2-3X a day. And it balanced my thyroid. Every so often for a period following I would feel it activate and take some more of the Thyrosoothe.
I also ordered the powders of Motherwort & Bugleweed when I was out of money and made capsules of the mixture myself – 1/2 & 1/2 of each of these 2 herbs. I bought it from http://www.healthherbs.com. It was surprisingly inexpensive. Be careful, since you don’t want your thyroid to go the other way and become too slow.
The reason it activated after 3 years was that I began taking Kelp tablets. I wanted to take them because of the Japanese nuclear explosion and felt it would prevent my thyroid from absorbing radiation. Sort of stupid- I realize now- since the iodine activated my thyroid so quickly. One tablet of kelp 1X/day for 1 week and whoosh- pump, pump that T3 & T4. So here I go again- just ordered my Thyrosoothe and am also taking the capsule mixture of Motherwort & Bugleweed. Do it just 3X a day (one or the other).
And thanks to this wonderful newsletter and the Kelp, I’ve become much more conscious of iodine in the diet. Usually I use Kosher rock salt anyway (no idodine) – but others don’t and the salt on commercial, packaged, & canned foods can really wreak havoc on the Thyroid when you’re trying to slow it down. I’ve been experimenting and it’s quite noticeable when I am careful to leave out the foods which are high in salt. Even milk products have iodine- though organic milk has less.
Hope these ideas help.
Posted by Lois McGraw on February 19, 2012 at 4:53 pm
I have been diagnosed with Graves Disease with, of course hyperthyroidism.
I am being treated with medication, including prednisone to help the swelling in my eye muscles. This morning when I woke up my left eye, which is the worst one, is not focusing well at all and the pupil of that eye is now smaller and is not in the center of my eye. It is down at the bottom of orbit. Of course my double vision is much worse. It being a week end day, I can’t call my opthamolgist so don’t know what to do.
Maybe my eye muscles are breaking away? Should I go to the emergency room ? It is very frightining. Any advice out there please?
Posted by sbankova on February 19, 2012 at 10:31 pm
Hi,
I don’t think your eye muscles are breaking away, may be it’s an allergic reaction to something. Try chamomile cold compress to reduce swelling, avoid direct light, no computer as well, give your eyes some real break, stay even in dark. You can also do the ‘Palming exercises”. However, if your vision is getting worse, go to the emergency as this might be a sign of something completely different, especially if it is accompanied with disorientation as well. Or may be call a family doctor, that’s why they are doctors.
Let us know what happened, hope everything will be OK..
Posted by Lois McGraw on February 20, 2012 at 4:32 am
Thanks for the encouragement! Trying to stay off computer. At work I am at the computer most of the time and it’s really hard on the eyes.
I put an eye patch over the worst eye, left one. It did help a lot and I was able to take it off most of the day. Guess I overworked it, as usual and had to put the patch back on. The double vision is horrible isn’t it?
Don’t have a “family” doctor, the clinic is closed for the week-end.
Not having any disorientation, thank goodness.
Since this is all new to me, diagnosed about 3 months ago and have seen 2 ophthalmologists, my regular doctor and an endocrinologist.
They are all working on me, but it sure takes a lot of time.
Have appt. this coming Thursday with the ophthalmologist that is treating my eyes. Said something about possible surgery. That is scary.
Best get off the computer now. I will keep you updated.
It’s great to be able to converse with someone who knows what I;m going through.
Thanks again, and best of luck to everyone suffering from this.
Posted by Liz Penman on November 30, 2012 at 10:09 pm
Hi I thought I would share my experience with you all. I have graves disease and Thyroid eye disease. i am in the middle of a 12 week course of Intravenous pulse steroid infusions for my eyes. I attend the hospital weekly on an outpatient basis and have a mega dose (500mg) of steroids pumped into me via a drip. It’s the first time my consultant has done it so I’m basically a guinea pig but my eye disease was very severe and I was very close to losing my eyesight.
The treatment and side effects are brutal …I dont sleep and . I’m very weak after the treatment . I have sickness and nausea, mood swings and palpatations which are very scary and my immune system is very weak. I have regular blood tests to check for diabetes as it can affect blood sugars, liver and full blood count as it can affect immune functoning also bllod pressure checks. I am at week six now and because the megadoses of steroids are building up in my sytem I am feeling crap and my doctor has signed me off work until the treatment is over.
IS IT WORTH IT I HEAR YOU SAYING……so far YES …I have got my eyes back…Double vision has gone, no more eye pain and I actually look normal again. I saw my consultant last week and she was taken aback at the improvement and has started someone else on this treatment.
Trials claim that Long term side effects from the steroids are less if treatment does not extend past 12 weeks and results are far better than oral steroids taken over a longer period.
Willi my eye disease return after treatment ? we will have to wait and see .
It’s very grueling I don’t deny but worth it.
Posted by sbankova on November 30, 2012 at 10:53 pm
Hi Liz,
thank you for sharing your story about the steroid treatment for your eyes. Actually, this is so far the first feedback from a real person I read, out of the clinical trials and scientific studies. I really hope that your eyes will have a permanent improvement, so please, keep us posted about how the things are going with you.
More power to you, stay well,
Svetla
Posted by Liz Penman on January 4, 2013 at 10:45 pm
Hi Svetla, thanks for your reply and support. I realise that steroid infusion treatment is very new to TED sufferers. My opthalmologist admitted that I was her first patient to try it and after extensive research I couldn’t locate anyone on the internet who has had this treatment. However according to my opthalmologist there are other TED sufferers in other parts of the UK who have only recently completed the treatment.
I have just finished the 12 week course and my opthalmologist is delighted with the results. So far the pain, inflamation , redness and double vision have all completely gone. So much so that no corrective surgery will be necessary providing it does not return, so it’s a bit of a waiting game at the moment.and I’m trying to stay positive. My opthalmologist has given me a red card referral which means that if the symptoms return I have to call her and I will be seen the same day with a view to starting the treatment again. She believes that the first two years of TED is when the damage is done so in order to prevent this the steroid infusions need to start in the early stages of the disease.
Although the side effects were very difficult to live with they did get better as the treatment progressed possibly because the dosage was reduced in the final six weeks. However it does take it’s toll on your immune system and I’m now having some withdrawal symptoms.
Was it worth it ? yes it was…especially if it prevents surgey in the future. Fingers crossed that the improvement will be permanent. I will keep you posted.
regards
Liz
Posted by Rose on May 4, 2013 at 2:27 am
I am debating having this treatment as well. 500 mg, that is quite a bit, I heard one gram which is 1000 milligrams, Some people from Dailystrength.com have commented that this treatment their (eyes). I live near Toronto, On. I’d appreciate you letting me know how it all goes. Thanks for the info. Rose
Posted by Rose on June 30, 2013 at 1:48 pm
Thanks so much for responding. I am wondering which is best…. let TED run it’s course, or have steroid infusion treatment. I’m worried about side effects of prednisone. Were you edgy and did you want to eat a lot? Any muscle aches and pains?
Posted by Svetla Bankova on January 5, 2013 at 12:16 am
Great to hear you are having positive results Liz! Keep us posted!:)
Posted by Ted W. on June 16, 2013 at 2:39 pm
Liz, how are you doing? Are your eyes still doing well after completing the IV Solumedrol therapy?
Posted by sandex10 on June 23, 2013 at 1:00 pm
Hi. I don’t know how I stumbled across this blog, but I also had the Prednisolone infusion treatment for my TED. It was a 6 week course, 500mg. I finished my last treatment about 2 months ago. I just saw my eye doc a week or so ago, and he was very happy with the results. Measurements showed that there was significant reduction in eye swelling. And I have not had any kind of eye pain since then. Only the usual tearing, which I’m afraid, will never go away. But all in all, I think I had good results. I’m considering asking him if I could do another round, because my eyes are still a bit protruding.
What’s strange is that right before this treatment, I was on a 6 month course of oral Prednisone, starting at 60mg, for kidney disease. That seemed to make my eyes much worse. But I think it was due to all the water retention from the drug. I asked my eye doc why the oral didn’t help my eyes, because that is also a standard treatment for TED. He said that sometimes it doesn’t work, and that the infusion method works much better. Anyway, that’s my story.
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Posted by Debbie Gilliland on January 14, 2017 at 3:14 am
I hope this blog is still active. Today I had my first IV steroid treat for Graves Eye Disease. My condition is rated as moderate but I have eye protrusion, swelling, pain, tearing. How long before I might begin to see results? My doctor has scheduled me for twelve weeks of treatment with one treatment per week. The last six weeks are at a half-dose. My eye disease started 13 months ago and my original opthalmologist wouldn’t provide any treatment because he said it was ineffective and I would need surgery after the disease stabilized. After reading about steroid treatments, I decided to change docs and he immediately sent me for the treatment. I hope I haven’t waited to long to start treatment. Any thoughts on that?