[green123]

#1060738

Hello-

I saw two doctors and both had different suggestions.It appears that the eyes will need steroid meds.

One recommended IV steroids. The other suggested oral and then radiotherapy.

What do you all suggest? I am very worried about the IV steroids as I have read scary things (ie potential major depression, potential liver issues) etc, but it does sound like the IV route is more responsive.

If you have experience, can you share? I do not know which option is better.

Thank you!

[Kimberly]

#1184420

Hello and welcome – Hopefully, those who have had steroid therapy for TED will respond; in the meantime, this link from the International Thyroid Eye Disease Society will hopefully be of interest:

(Note on links: if you click directly on the following link, 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://thyroideyedisease.org/medical-therapy/

[Liz1967]

#1184421

I have had IV steroids (eight weekly infusions) as well as oral steroids with radiotherapy. I have tiny veins, so had to have a PICC line placed for the infusions, which were done at home by a visiting nurse. I had optic neuropathy and the infusions fixed that; however, when stopped, my eye irritation, retraction and diplopia increased. At that point, I went on oral steroids at a pretty high dose, like 80 mg, for a week and then began the series of 12 ocular radiation treatments. The oral steroids were continued for several months, tapering until off of them. The radiation stopped the diplopia progression and lowered the retracted eyelid. The steroids made my eyes much more comfortable, although still with chemosis and irritation. I had no ill effects from the steroids at all, either infused or oral, or the radiation. I had a total thyroidectomy in the middle of the infusions, which of course lowers antibodies over six months or so. All in all, my eye disease burned out soon after these therapies and I was able to start corrective surgeries.
If I had it to do over, I would have the thyroidectomy sooner and radiation with oral steroids right after if necessary. Radiation is also used for optic neuropathy and it is my understanding it is most effective in first six months of eye disease as far as its effect on the eye muscles. I had it about month eight. While I had no side effects from the steroid infusions, I dont know if I would go that route again,.
Hope this helps.

[green123]

#1184422

Liz, thank you so much for your comments.

You mentioned that the IV steroids, when stopped, made eye irritation, retraction, and diplopia to increase. Is this increased symptoms relative to when you were on steroids or are you saying that the IV steroids made those symptoms even worse than you had begun steroids? Thanks again.

[Ellen_B]

#1184423

Hello,
I remember hearing a thyroid specialist who at the time was attending a support group meeting for Graves’ patients say that many doctors are hesitant about putting patients on steroids because of the side effects. Certain patients he thought should be given an opportunity to do the steroids because they could benefit. Have you been able to ask your doctor (your ophthalmologist) if there are fewer side effects with the injections than with the pills? If there are fewer side effects, which side effects are reduced and which remain?

[Liz1967]

#1184424

The IV steroids helped with the irritation and kept retraction the same. Did not seem to do much for double vision. Then when stopped, the irritation returned, the retraction got worse and diplopia kept progressing. There is no taper with the infusions and tapering the oral steroids prevented rebound irritation. The oral steroids made the irritation less right away. I think the stopped progression of the diplopia as well as the improvement in retraction was from the radiation. The proptosis did not get better on either treatment. Some docs favor the infusions, the docs I saw at a major center liked the oral steroids. I had no physical side effects from either. I felt fine throughout. I did have some increased cataract formation from either the steroids or the radiation, but as I am 67, I was getting there anyway. The cataract surgery was easy and I didnt mind as it freed me from glasses as the dryness prevented my wearing contacts. I had a double dose of steroids, the high dose infusions followed by the lower dose several months taper of oral steroids. One course should be it, and if I were to choose one, it would be the radiation/oral steroid route as you get the benefits of the radiation and the steroids.

[green123]

#1184425

Thank you all. The comments are helpful.

Liz, do you recall your IV dosing?

[Liz1967]

#1184426

I had to go back and look at my records and I actually had 3 months, not six weeks, of weekly SoluMedrol infusions. It was 6 weekly infusions, thyroidectomy, then 6 more weeks of infusions. How quickly one forgets! The dose was 250 mg per infusion. I have heard of double that dose being given. Unfortunately, my doctor was not real familiar with this therapy which is why I traveled out of state for all future therapies!

[snelsen]

#1184427

For TED, (thyroid eye disease,) the main reason to give steroids is usually because the orbital swelling of the muscles is so bad, the major concern is that the optic nerve might be compressed, and occluded, because of the pressure.
If this happens, it results i permanent blindness. This “buys time” to save the the optic nerve.) It “buys the time to keep you safe, before you have a OD (orbital decompression.) So when steroids are recommended by a neuro-ophhthalmologist, I would (and did) take them. I had infusions in the hospital for an hour, for 3 days in a row. The standards of care could have changed since then, for it was in 2008. ( I recommend going to this kind of doc if you can find one in your area.)

Steroids are marvelous when needed and indicated, and yes, along with many other drugs, have side effects. They also save lives.

I know it is confusing to have differing opinions from docs. And Graves’ and especially TED, are not understood well by all docs. There is no uniform agreement. In my personal experience, I had IV steroids, then an orbital decompression. My near-op doc did not prescribe radiotherapy, and did not recommend it. He said he would not do it.

As you see from my history posted on the site, my TED appeared almost 5 decades after Graves’ and a thyroidectomy! My TED is severe, and bright light , dry eyes and inability to have my eyes close completely at night are still issues for me today.
Shirley

[Liz1967]

#1184428

Shirley, you are making me work today! Everyones disease course is so different. To complicate matters, medical opinion keeps changing. Here is a study directly comparing infusion alone vs radiation and pulse steroids. Optic neuropathy was mentioned as occurring in the steroid alone group.

Efficacy of combined orbital radiation and systemic steroids in the management of Graves’ orbitopathy. – PubMed – NCBI

http://www.ncbi.nlm.nih.gov/pubmed/26876240

Confusing isnt it. When in doubt, pick a great doc from a center that sees lots of Graves eye and trust his experience! Even then you can get differing opinions.

[flora]

#1184429

To Shirley and Liz –

While eyes are not (yet) a big issue with me, I just have to jump in here and tell you both how much your input and experience matters to me – and likely to most everybody else on this great forum. I’m sorry for all that each of you has had to deal with, but it’s wonderful that you share it all with us. With such great members, and Kimberly to shepherd us along, we’ll wrestle this GD condition to the ground! Thanks so much, you both!

flora
PS: Liz, have you thought of upping to “Warrior” status like Shirley …. ?

[laura1701]

#1184430

High dose IV Pulsed steroids worked perfectly for me with severe TED in my left eye in 2012. 12 week course of 500 mg for 6 weeks and stepped down to 250 mg for last 6 weeks. My vision was saved and my double vision drastically improved. I did not require any surgery and thought my bout with TED was over. It was a huge success to me. I had minimal side effects from the IV steroids and believe me I was scared of the steroids. I took a 4 week course of oral steroids right before the IV steroid treatments. The oral steroids had a minimal impact on my TED and I had more side effects from them. I went for 2 years with very manageable DV corrected with ground in prism glasses and thought it was all over. Started another course of IV steroids in 2015 after my right eye started to act up. This time the IV steroids where not effective enough, although they bought me some time to figure out surgical options. After 6 weeks of treatment, I ended up having an orbital decompression on my right eye to save my vision. I could not see the big E on the eye chart and had started losing color vison with my right eye. I found the IV steroids much easier to tolerate than the oral. I do find I am more sensitive to steroid meds now. Ask for a sleep aid for the first couple of nights after the infusions-if you go that route. It is frightening to have all of this thrown at you and to have to make quick decisions when your sight is threatened. I chose the IV steroids because of the studies that show that they seem to have a better side effect profile and can be highly effective-as in my first course with my left eye. I feel for you having to go down the TED road. Good luck!

[snelsen]

#1184431

Liz, so nice to hear from you, and wonderful to hear your thoughts and comments!!! Thank you. I will ready your article as soon as I become conscious after coffee! It is our rain in SEattle and I feel like a slug.

[snelsen]

#1184432

Flora, thank you.
As a complete aside from eyes and neck, I want to tell you that I just spend four wonderful days in Vancouver! What an amazing city! Sooooooo beautiful!
Not sure where you are in Canada, but if you decide to visit, PM me, and I will tell you where to find really good food.

I sure hope you NEVER have an eye issue. I struggle with trying to decide which impacted my life worse. Eyes or Graves. I think TED “wins.”
Shirley

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