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  • S01663333
      Post count: 6

      Howdy!
      Has anyone out there had a rituximab infusion to treat TED? I had a bad reaction to steroids and my doctor actually got my insurance to approve rituximab for my TED. I am afraid to have OD surgery. Has anyone had any luck with this? I am set up for Wednesday to get the meds. Thanks for all your posts they sure help.
      Jennifer

      snelsen
        Post count: 1909

        Hi Jennifer, here is my experience.
        I had severe TED, still do, I guess. The steroids reduced the orbital swelling as long as I was on them, but all reverted back to bad when i tapered the prednisone. AND I hate that drug! Then had methyltrexate, lots of shots, did not seem to help. Then rituximab was suggested, but I was so so sick of trying interventions that did not work, I simply did not want to take it, go to the hospital to do it, all the rest of that.
        I HAD to have an OD because I was losing my vision. No choice.
        Although evidence based studies are quite small, they are encouraging with using rituximab to decrease the severity of TED.
        Do I wish I had done it? Yes. So if you have TED that is driving you nuts, and it is several, and your doc has gotten that approval, sounds like you are going to do it. And I am glad that you are. Maybe it will save you some of the misery that I have experienced. The fact that your doc knows about it is very impressive. He is keeping up with the very recent outcomes in that area. He has probably told you about them. Do keep writing.
        Shirley

        Kimberly
        Online Facilitator
          Post count: 4290

          Hi Jennifer – As Shirley mentioned, the studies so far are small, but encouraging. Here’s a summary of one:

          (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, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

          http://www.thyroid.org/patients/ct/volume3/issue8/ct_patients_v38_9_10.html

          Wishing you success with this treatment…please keep us posted on how it goes!

          tnapavlu
            Post count: 20

            Please let me know what you do and how it goes. I have severe TED and am looking for any option out there to treat it, but am terrified of the surgery both cost and possible affects. I also noticed you were from Colorado which is perfect cuz if you have good luck I’m going to your DR! lol

            snelsen
              Post count: 1909

              Tnapuvlu, Rituxin is not a cure. You will still have TED. You will still need to have good eye docs involved in your care. If you are in the active phase, this is very important. I suggest you ask your eye doc his/her thoughts on what stage you are with TED, review what aids you have used so far-there really is not much to do in the active phase in terms of treatment- only to help with symptoms, eye ointment and drops, sun glasses, see an eye doc about prisms if you have double vision. And definitely have a doc checking your visual fields. If you begin to lose any vision, or if the color red changes in any way, you must be seen. This could necessitate an orbital decompression in the active phase to save your vision. This happened to me.
              Read the study Kimberly referred to. It is small, and basically, people are hoping, and in a few people it did, decrease the severity of TED.
              Talk all of this over with your eye docs.
              Shirley

              S01663333
                Post count: 6

                Hi everyone,

                Thank you for all the replys.

                Shirley- thank you for all the information. My doctor thinks I am still an active phase which drives me nut because it’s been a long time. I just have enough makers that they think it is active. I ahave my eyes checked all the time and my vision is fine but i have glucoma (i cant spell) due to the graves. My eye pressure has been controlled with meds. I will definently let everyone know how it goes and I will post updates over the next few months to give everyone information. I am very hopeful because I am horrified at the thought of OD.

                Kimberly- thank you for the study I have read this along with many others. I kind of feel like a lab rat due to the small scale of studies, but I am hopeful.

                tnapavlu- I will let you know how it goes. I see Dr Michael J Hawes and he is excellent. He is at 850 Harvard street which is a drive but worth it. He referred me another dr to argue with my insurance about rituximab and it worked. The other dr is Eric Letko and he is also very good but is just familiar with rituximab and not graves disease so I have to see them both during this treatment. I will give updates. I go in tomorrow for the first treatment.

                Jules
                  Post count: 85

                  Yes please up dates. I wanted to try that but had the OD surgery to save my sight in the right eye. Now,y left eye is acting up and I will NOT to another OD because of my very un usual situation with my last surgery.

                  Having only one functioning eye I want to protect that at all cost

                  S01663333
                    Post count: 6

                    I am sad to report that I did not take well to the treatment. I had an allergic reaction and broke out in hives. I had an itchy throat and they stopped the medication. I spoke with my doctor and he said no more because he doesn’t want a severe reaction, so i am sad. : ( it looks like my only option now is surgury if I choose to have it. I might have to live with my fucked up eyes. I just can’t imagine having that type of surgery. :( i suppose that “it is what it is.”

                    snelsen
                      Post count: 1909

                      Hi, I had to have an OD in the active phase. It’s worth it. But I sure would lean hard on your resources to find out who does a LOT of them. we are told to ask surgeons how many they do a year, and what their complication rates are. BUT GOOD LUCK FINDING OUT THE 2ND information. I had an OD cause of optic neuropathy. Worth it absolutely.
                      So sorry about the Rituxin. Crap. THis is a very fucked up disease. No other words suffice.
                      Shirley

                      catstuart7
                        Post count: 225

                        S01, so sorry to hear about the allergic reaction. I hadn’t posted yet but was reading your thread hoping it would work out. I don’t know if you’ve heard of Moore’s book Thyroid Eye Disease but she’s got a pretty big chapter on conventional treatments and also alternative. I’m looking right now at a section on immunosuppressants other than steroids. She lists cyclosporine A, ocreotide, pentoxyfylline, and methotrexate. There might be something useful in there perhaps. Wishing you well!

                        Kimberly
                        Online Facilitator
                          Post count: 4290

                          Hi all – I prefer to not delete posts, if at all possible. However, please note that any therapies discussed on this board need to have credible, published research in an appropriate medical journal in order to support their use. Trying an unproven, alternative therapy without the supervision of a doctor (the author of the book mentioned has experience in the medical field, but is *not* a physician) can have very serious consequences.

                          Unlike some other Internet boards, which are basically free-for-all types of forums, this forum is hosted by the Graves’ Disease and Thyroid Foundation, which is managed by a Board of Directors. Our board’s policy is that any information shared via GDATF resources needs to come from “evidence-based medicine.” They do not want GDATF resources used to spread information on unproven therapies that could potentially cause harm.

                          Of course, in this case discussed in this thread, Rituximab had a poor outcome. But the administration of this drug was carefully managed by a physician and discontinued immediately when side effects occurred.

                          catstuart7
                            Post count: 225

                            Hi Kim, I’m guessing you were referring to my post mentioning the other immunosuppressive drugs? I know this board is not supportive of mentioning alternative therapies so I try not to, but those drugs are supported by medical research mentioned in the book. So they are therapies one’s doctor would have to administer and would find in credible journals. Should I simply refer people to the book or if I mention lesser known therapies must I post a study next to it each time? (Tone is hard to convey on the internet, I’m not being snarky but seriously asking)

                            Kimberly
                            Online Facilitator
                              Post count: 4290

                              @catstuart7 – No worries, it’s just that any links/information posted on these boards needs to come from a *physician*-authored textbook, published, peer-reviewed medical journal, or a well-established medical organization (American Thyroid Association, American Association of Clinical Endocrinologists, National Institutes of Health, major universities, etc.).

                              The concern from our Board is that someone here could pick up information that did not specifically come from a physician resource, have a negative treatment outcome, and then come back to the GDATF saying it’s our fault. Our Board members put their names out in the public to lend credibility to our organization — but this also means that we operate under tighter guidelines than other similar boards might.

                              Take care!

                              S01663333
                                Post count: 6

                                UPDATE 8/3
                                So I went to see the dr today and fully expected him to clear me and send me on my way. He said “I have good news for you. I spoke with a friend of mine who is an oncologist. She said the reaction you had to the medication can be controlled by pre meds.” He is sending me back to try this again at her oncology center in wheat ridge. Hopefully things will be better this time. I will let you know how things go this next time. Paying to the lord to help me through this with success.
                                Jennifer

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