[snelsen]

#1064715

hi hoochie, OHHHHH YEAH! I have had multiple experiences with prednisone. Don’t know how much you re taking, but last year, I had two rounds of 60mgm for six weeks, also two separate infususions of Solu Medro , which is methylprednisone(1 gm.) My experience? I HATE the drug, absolutely hate it. The dose is relevant, a little one does not have the side effects a large dose has. 60mgm is large, 2.5mgm is tiny. My adjectives to describe how I feel on Prednisone follow, they get more pronounced the longer I was on the dose. Incidentally, I am sure your doc will do this, but it is critical for you to taper the dose, do exactly what the schedule says, when you begin to go off the drug. Ok, how I felt:

irritable, kinda crazy, antsy, exceedingly hungry, eating everything in site. Much difficulty sleeping, just not "myself."
It is an anti-inflammatory. I had temporary improvement of the swelling, redness, tearing, but it did not help my extreme photophobia (can’t stand the glare of the sun or bright lights, have to wear sunglasses all the time) at all.
I would subject myself to the torture of having skim milk in my morning coffee, rather than 1/2-1/2, rather than have prednisone again!!!! So I guess I have told you how I REALLY FEEL about prednisone!!

One thing concerns me. It sounds like you have TED (thyroid eye disease.) From your post, it seems that the endo is managing it at this time? Have your endo referred you to a neuro-ophthamologist? If indeed you have TED, you should also have good eye docs who understand it, involved in your care.
There are good posts regarding TED that you can search for. I have TED, if you do, it is a long time before you can have
eye muscle surgery, for the inflammatory stage 9which you must be in, cause you re on pred) has to end. Eye muscle surgery has to be done when the antibodies are no longer attacking the eye muscle. But first, write back to tell more about your eye situation and your docs.
Shirley

[hoochie]

#1018424

I have been on prednisone for almost 5 weeks now. This is for Graves Eye disease. It has helped with the swelling, redness, and tearing. After this round of steroids, I will visit my Endo in about 2 weeks. What can I expect, does this normally do the
job, will the eyes return back to the same state they were in, will I have to keep taking these awful drugs? They have suppressed my immune system so much, I don’t have any energy. I am hoping that the disease has stabilized and will talk to
the Opthamologist in Oct about the possibility of eye muscle surgery so I can get my vision back. Anyone else out there have any experiences with this drug and what to expect. Thanks much!

[Kimberly]

#1064716

Hoochie – I haven’t personally taken prednisone, but Shirley has some great info. Unfortunately, prednisone is only a temporary “fix” in terms of providing relief from TED. I’ve heard many doctors say that they would not keep a patient on prednisone indefinitely because of the potential side effects. However, I know of one individual through the GDF who has been on prednisone for an extended period of time, with her doctor’s blessing. Her TED symptoms would come raging back when she stopped the Prednisone. So this is a choice you will want to make in conjunction with your doctor and also an ophthalmologist.

[hoochie]

#1064717

Hi Shirley and Kimberly
Thanks for your replies and good feedback. Two more days of the prednisone, then a visit to the Endo in about a week.
As far as the eyes, the redness and swelling is mostly gone. I of course still have the double vision, which obviously is
caused by the scarring on the eye muscle. Am a bit concerned that after I quit these meds, it will come back. Am taking
supplements for inflamation, Flaxseed and MSM, which i have read does help. My Endo has not ordered any tests prior to my next visit. Not sure why, maybe he wants to see me first then order the tests. I have a follow up visit with my Opthamologist in October. I am sure I will have to get a new prescription for my prisms. The glasses worked for a while, then the eyes changed. Now they seemed to have gone back just a bit. So I am thinking maybe a small change in the lens will help me see
clearer. I feel ok in the mornings, but by mid afternoon, I feel lethargic. I am guessing it is the prednisone that is making me feel that way. I take afternoon naps that helps me get through the day; and yes, the prednisone makes me want to eat constantly. Have gained about 5 pounds, not a good thing. Shirley, I must have a very similar eye problem as yours. I cannot stare straight ahead or upward in one eye. It is weird, the muscle seems to change throughout the day. Sometimes it looks like it is straight on, then as I get tired, it seems to pull downward. I can still drive fairly good, but do not drive on interstates any longer. Is the eye muscle surgery painful, is it done in the office or in a hospital. I have read that some people are awake so they can tell the surgeon when the eye is in line. So much info to take in. I only wish I had known 4 years ago when I started having these problems I would have been told what I had. Have a wonderful day. John ” title=”Very Happy” />

[snelsen]

#1064718

Hi John, I am glad you are nearing the end of your prednisone. Are you tapering the dose? Usually, with prednisone, there is a long, gradual taper, when you decrease the dose by 5mgm or so every week. Good idea to ask that question, if you have been told to abruptly stop the drug. Before you go to the doc,maybe a good idea to talk to a pharmacist in the drugstore. This depends a lot on the dose you are taking. As Bobbi said, it is a complex drug which should not be used over an extended time, it has many serious side effects. Generally, when it is prescribed, it is referred to a "burst" of prednisone, indicating it has a beginning and end in a short period of time.
My experience with prednisone was encouraging and discouraging regarding TED. It really helped my vision when I was taking it, but when I stopped, the vision got worse again. ( I had 60mgm for one month, then a long taper.) This is because I was in the first part of TED, which is the inflammatory stage, which, as you know, your eyes are changing a lot, getting better some days, worse than others. When we react so positively to the drug, that is an indicator that we are still in the "active," or inflammatory stage of TED. After many eye measurements, the TED stops changing your eyes, then we are in the fibrotic,
or "cold" phase of TED. That is when surgical interventions can happen. I have been in the active phase for a little over a year and 1/2. Based me saying my eyes are not changing all the time, plus many measurements taken by repeated visits to eye docs and neuro eye docs, I probably am in the cold phase. Because prisms have never helped my double vision, and because the measurements of damage to my eye muscles can be relied on to make decisions, I will have strabismus surgery (eye muscle surgery) in the near future. The origin and insertion (how the muscles are attached) inferior muscle, which are very fibrosed, will be moved, with the goal of allowing me to look straight ahead with no double vision. He said that they are the ones preventing me from looking up, and there might be a 30% improvement in looking up. It is a day surgery, and a general anesthetic is used. The docs who do this surgery are pediatric eye surgeons who operate on TED patients.
But this is not around the corner for you. Later on. I will post my experience when I have the surgery, plus how much it helped.

John, I need to have my morning cup of coffee, and wake up a bit. I will send some very valid references to read on TED, which really helped me a lot! Plus this site. I don’t recall right now if they can be accessed electronically. If not I can snail mail them to you at a later date.
**Read the explanation of TED on this site from the home page, and the frequently asked question. As I recall, you will learn
more about the progress and duration of TED.

Have you seen a neuro-eye doc? Is that the eye doc whom you are seeing? I strongly suggest that you do that. They have a sophisticated visual field machine to check your visual fields, and they have different tests to check to be sure that the inflammation and fibrosis is not pushing on your optic nerve. One of the biggest signs of that is inability to recognize colors, with the color red being the first one to look less bright. In this paragraph, I am just telling you my experience with this.
I am one of the unfortunate people whose optic nerve was being pressed, and I did not have peripheral vision (looking to the side) in my left eye. For this reason, I had a surgery that was indicated only because of the pressure on the optic nerve, but this does not happen to most of us. IT is very rare.

I feel like I am bombarding you with too much information. Sorry. Since you are a guy, and many more women have this disease, if you re interested, I will ask this man in Chicago who had TED if he would be happy to visit with you on the phone.
I got his name/number through a circuitous route of people. I called him, and it was very reassuring to me to talk to him.
I presume Bobbi will be glancing at this post first, so she can tell me if this is ok to post this info.
1. At this point, so early in this process, it seems right that your endo sees you before he orders labs.
2. You have not mentioned if you are seeing the endo because you have Graves’. Do you? That is an entirely different subject than TED.
3. You will probably lose the 5# you gained when you stop the prednisone, and your appetite will not be so voracious.
shirley

[hoochie]

#1064719

Shirley:
Yes, I am on a dose of prednisone that starts out high and each week, works it way down to a lower dose. I am now in the last week of the lower dose. I have not seen a neuro opthamologist. My opthamologist is very aware of Graves disease and TED.
He performed all the tests on my eyes, and took measurements, so I feel pretty confident with him at this time.

[snelsen]

#1064720

yea! sounds great. It makes such a difference when we have confidence in our docs! Glad to hear it.

[Meredith]

#1064721

Hi all: I am new to this site. I was diagnosed with Graves Disease by an eye specialist from Mass Eye and Ear (brought into my Opthamogist’s office b/c they couldn’t figure out what the problem was) because I was having double vision, tearing and eventually swelling and protruding right eye. (Did I ever look like a freak show!) He put me on Prednisone and I was on it for 9 months – 60 mg for about a month before I got second/third opinions to get off the nasty drug. (one from one of the top endrocronologists at Mass General – who by the way had the worst bed side manner and I would never go back to him no matter what his reputation calls for) I was told that the side effects were far worse for me than the vision issues. I was lucky that it did not make me crazy or loose sleep but I felt very strange. I blew up (25 pounds – Ha ha the eye surgeon that prescribed the medicine also had a crappy bedside manner and told me that there were no calories in prednisone – I wanted to deck him!!!) and had that nasty "moon" face. It was a year in my life that I hope I never have to repeat. Once off the drug I was soon weaned off all my thyroid meds as well and eventually found myself in remission. I got prisms for my glasses which have helped tremendously. There was a time when I really should not have been driving; especially, down the highway where there would be 8 lanes to choose from 4 of which would have killed me had I chosen one!!!!

I have had 3 wonderful drug free years. Unfortunately, I feel it all creeping back. Eyes are puffy, aching joints (the first round was tendonitis in both elbows with no injuries to speak of) now I am feeling it in my knees. Strange pains that seem to come from no where – difficult to walk. Feeling tired and not wanting to get out of bed, gaining 6 pounds in a month (ok its summer and I’m not eating as I should) (I had just finally got down to my pre graves weight!!!!) Today in a yoga class my legs were shaking up a storm – weakness coming back. My eyes are beginning to get sensitive to the light and weep a bit. all symptoms that I had 4 years + ago.

I know that this time I am going to approach this damn disease much differently. I will not go back on the prednisone!!!!! I guess because I never had to have the eye surgery I can not say it was worth it! That said, it could have turned out quite differently had I had to have had the eye surgery.

Does anyone have good advise about diet? I have read some things about what to avoid. No aspartame, no iodine. Avoid processed foods that might harbor iodine and msg. I stay away from Chlorine as well. I would love a more expansive list. I want to try a more hollistic approach to this disease and would love some input! Does anyone know anything about doing eye exercises to keep the eye muscles strong and maybe the scar tissue down? The eye doctor scoffed at this when I brought it up 4 years ago but my instinct tells me differently.

[Kimberly]

#1064722

Meredith wrote: I blew up (25 pounds – Ha ha the eye surgeon that prescribed the medicine also had a crappy bedside manner and told me that there were no calories in prednisone – I wanted to deck him!!!) and had that nasty "moon" face.

Hi Meredith – Welcome to the boards! Ugh – don’t you wish that you could send some docs to summer school for remedial sensitivity training? We had a presenter discuss the side effects of Prednisone at our patient conference a couple of years ago. He noted that while weight gain with Prednisone is especially noticable in patients who tend to be emotional eaters, some patients can gain weight on Prednisone without increasing calorie intake at all.

Sorry to hear that you aren’t feeling well. Hopefully, you have access to a good endo who can test your thyroid and antibody levels to determine for sure if your Graves’ has returned. Most patients, once they go through the full cycle of thyroid eye disease, will *not* see a recurrence of symptoms…but there are a few exceptions.

I’m not aware of any specific eye exercises that can help with TED. There’s just the usual advice about keeping eyes lubricated with preservative-free drops, wearing sunglasses while outside, avoiding windy conditions if possible, and taking steps at night if needed to ensure the eyes close all the way.

As for diet, there is no one particular "thyroid diet". I can’t tell from your post if you received any particular treatment for hypERthyroidism, but that will impact whether or not you need to watch iodine. The only use for iodine in the body is that the thyroid gland turns it into thyroid hormone. If you do not have a functioning thyroid and are on replacement hormone, you don’t need to worry about iodine. If you still have your thyroid, but are going through a hypER phase, it’s a good idea to avoid high-iodine foods like seaweed…as the extra iodine basically throws fuel on your already hypER fire.

You read all sorts of stuff on the Internet about Aspartame, but to my knowledge, none of it has been absolutely verified. Still, I have mostly eliminated it from my diet since getting diagnosed in 2007. Also, I find that msg tends to make any hypER symptoms worse, so I avoid that as well. You are correct that it’s a good idea in general to limit processed foods as much as possible and focus on whole, fresh, nutritious foods.

Best of luck!

[Meredith]

#1064723

Thank you Kimberly for your reply. I do still have my thyroid and as of my last blood tests in June my levels are all in the range of "normal". I hope to learn lots from everyone on this discussion board. I have never read that joint and tendon issues are a symptom of Graves but that was a definite symptom the first time so I’m assuming that my tendonitis in both my knees (with out obvious injury) is my body telling me something. Has anyone else had issues with tendonitis at the onset of Graves?

[snelsen]

#1064724

Hi Meredith, Kimberly addressed a lot of good points. My thoughts here are to agree with everything she said, and add a few comments about TED. Re the prednisone, it is not common at all to be on pred for nine month re TED. Usually, it a month of 50-60mgm with the added taper at the end. SO GLAD you went to other docs who got you off the stuff.

Re TED. as you know, the symptoms you are having are some of the same symptoms of recurring TED. I do suggest to you that you begin going to a good neuro opthamologist who is familiar with TED (I think generally they, but good to check out names with endo folks, too. Get a good baseline eye exam. Are you still wearing prisms? I assumed from your email that they helped a lot four years ago, got you over the TED hump, and then your eyes settled down? Meaning, you got back to "normal" with no double vision, no tearing and photophobia, and all that stuff? That is surprising to me, for in the course of TED, the antibodies attack the eye muscles, and they become fibrosed, or sort of frozen, to a greater or lesser degree.
That is why we have the double vision,cause the muscles have lost their ability to stretch, or expand, when we look up, down, sideways or straight ahead, all dependent on which muscles are damaged. In my case, my downward vision is perfect, for the superior eye muscles have not been affected by the disease. But the inferior muscles, the ones that allow me to look straight ahead, and up, are very fibrosed, so that is where I had my double vision issues. Fibrosed muscles do not get better, I don’t think, the damage is permanent. After all the damage is done, and the vision is pretty stable, the measurements stable, for people like me, who do not want to live with this, the next step is the eye muscle surgery, or strabismus surgery, and I am looking forward with great eagerness to mid September when I have these procedures done. My upper oblique muscles are also slightly affected.

But-when I was hyper, I had no muscle or joint aching, not much knowledge or experience about that, so glad the facilitators are helping with that. Looks like it is time for an appt with an endo for labs, hopefully one who is a compassionate human being and understands all the components of Grave’s. As you begin this again, try to get your labs before your visits, so there is something to discuss when you are there.
Keep writing, this site, the people writing and the facilitators help a great deal in keeping me slightly sane during TED.
Shirley

[Meredith]

#1064725

Thanks Shirley: Yes, I still have double vision and the prisms help tremendously. Like you I am fine when looking down (hense no prisms needed for reading glasses). They eyes have definitely settled down. Still puffy eyebrows and only a doctor or another Graves patient can tell that my eye lids are a bit retracted and that I have that glare look. The bulging eye settled down and though slightly bulging at least the 2 eyes are now the same!!! I’m not as gorgeous as I used to be but that’s just my lot in life. hee hee I try to keep positive.

I was seeing that eye specialist but I might look for another one just to try out different personalities. I must say it took my regular eye doctor to give me the prescription and prisms that work. I had a pediatric eye doctor and another specialist from Mass Eye and Ear try and fit me for prisms and get my prescription right and it was a disaster. The top dogs are always the best! I’m very lucky that my endro is the best and most compassionate doctor I know. Since I just had lab work done in June and all was ok I might ask for another lab work next month to compare to and then ask to be seen in September instead of waiting until my next scheduled appointment in December. Getting into this Endo is almost next to impossible!!!!!

[Kimberly]

#1064726

Meredith wrote:Has anyone else had issues with tendonitis at the onset of Graves?

Hi Meredith – I have not heard of joint pain being specifically associated with Graves’; however, joint pain is often associated with being hypOthryoid.

One other thought to consider is getting your Vitamin D levels checked. Mine were low when I went in for my annual physical, and my doctor has me on extra supplements to try and bump the levels up. He said that Vitamin D helped with bone health and a host of other functions.

However, you should definitely get tested and consult with a doctor before starting on any type of supplementation regimen, as too *much* Vitamin D can be toxic.

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