[Anonymous]

#1078202

I’ve had quite a bit of experience taking Prednisone, though I haven’t had radiation on the eyes. I’ve been on doses quite a bit higher than 30 mg. Are there any questions I can answer about that?

Dianne W
NGDF Online Facilitator

[Anonymous]

#1078203

Well, my concern is first of all, how hard is the steroid on your body..is 3 months considered short or long? I know 30 mg isn’t the heaviest dose, but I did see my grandfather spend his last years on doses triple that, and what it did to his face. And of course, struggling with the weight issue is a concern. My doctor had me taking so much tapazole that he made me hypo, then i supplemented with synthroid..the extreme has done a number on my body. Besides weight fluctuation (mostly up), and the hair loss, among all the other hypo/hyper side effects..I wonder, will the Prednisone make things better or worse? The eye doc says that I may need it in the future if the eye disease progresses on its own, but the endo says a 30 percent chance of it worsening if i do radation. Do you have any other statistics? My endo seems to be okay, but not the greatest bed side manner and tends to always talk like a doctor, if you know what i mean? Sometimes the best medical advise comes from those in the same boat you are in. When I told him that i’d lost half my head of hair, how long until the hormones regulate now that i’m hyper again. He said, awhile, so you can always take rogaine for women. Not really what i wanted to hear.

Also, If i may ask, do you know, are leg cramps a side of tapazole, muscle pain in general?? I appreciate your feedback and guidance. Thank you, pam (skysmom)

[Anonymous]

#1020722

I just wondered, has anyone had to take Prednisone due to the Graves Eye Disease before doing radiation? I am in that dilemma now. I really do not want to take the steroids, the doc said 3 months at 30mg a day. Then I can do radiation, because without it there is a 30 percent chance of the eye disease accelerating. I am just wondering if anyone has had any experience or has been in this situation. For now I’ve elected to continue with the Tapazole. I did my 6 weeks with no meds, and I am already back at TSH .01, so we are starting out slowly with 10mg of Tapazole. Thanks, I appreciate any feedback. Sky’s mom!

[Anonymous]

#1078204

Pam,

My own experience with Prednisone at doses as low as 30 mg for a period as short as 3 months is that the moon face and big weight gains have not happened, though I have had significant fluid retention that went away when I went off the Prednisone, and weight gains of about five pounds. I understand that different people respond in different ways to doses of Prednisone, so keep that in mind.

I’ve been on higher doses also, and have been euphoric and sleepless on the higher doses, and as I tapered down and off the Prednisone I’ve had some trouble with significant depression that went away after a time.

There’s a book called “Coping With Prednisone” that has been on the NGDF approved reading list that I recommend you read. Three months is a long enough time to be on it that you could have side effects. 30 mg is not a huge dose, but it is a significant enough dose that you should be aware of the effects.

Since being on Prednisone too much does have known side effects, and since treating with radioactive iodine for people with significant eye disease can increase the severity, some doctors recommend thyroidectomy for people who have the eye disease.

As for statistics on chances of the eye disease worsening after radioactive iodine, this isn’t something anyone knows for sure at this time. Your own doctor is the best source of information, keeping in mind that some doctors are better informed than others, and we are free to get second opinions.

On hair loss: Even now, many years after treatment, I get spells of hair loss every time I need a change in dose. So for me, it has been changes in thyroid levels that trigger the hair loss, not being hyperthyroid or hypothyroid per se. Even tiny changes fill my drains with fistfulls of hair again.

As for muscle cramps, I haven’t been on tapezole but have had muscle cramps as long as I’ve had Graves’. Certainly I’ve had them more when I’ve been either hyperthyroid or hypothyroid, but I’ve still had more of them than normal after stabilization, as well. My endocrinologist hasn’t been able to explain the reasons for this. He’s suggested I take more calcium and magnesium supplements, which I’ve done, but this hasn’t entirely eliminated them.

I know you are going through a lot and have some difficult decisions to make. If you need a shoulder, feel free to email me.

Best wishes,

Dianne W
NGDF Online Facilitator

[Anonymous]

#1078205

thank you so much for your help and information, it makes sense and i see im not entirely crazy and partially bald alone! I did get a doctor’s name for a second opinion, so maybe i will use it. It’s just entirely frustrating. I also will read into that book and some other info. My doctor is not pushing treatment either way, and is not a big supporter for me to get the thyroidectomy at this point. So day by day. I will absolutely email you when I feel these overwhelming moments (and mornings when my close don’t fit)..Thank you, Pam

[Anonymous]

#1078206

I took the Prednisone 2 days prior to having the RAI treatment, and didn’t need to continue afterward. This was because of the graves eye disease. I don’t see any difference in my eyes. They are still as bulgy as they were before. I guess that’s good, they didn’t get worse.

[Anonymous]

#1078207

I have just started 80mg of Prednisone for about one week. Currently, I have been having trouble sleeping. However, I hope this will soon pass. I have been diagnosed with TED with no detectable evidence except for the manifestation of one bulging eyeball. I am 51 years old and workout at the gym 4 days a week and never had any physical ailment. This current situation being my first. My issue is with the only prescribe medication to impede this condition. I have read on the internet the following: “The major effects of steroids is to accelerate the aging process. So, hardening of the arteries accelerated, diabetes develops, cataracts, osteoporosis, degeneration of the cartilage surfaces of the body. We try to minimize the length and dose due to this problem. Unfortunately, there is no other drug which will accomplish their anti-inflammatory effect. Methylprednisone is a similar drug in terms of effects and side effects.” Is there a time curve associated with how much irreversible damage I will do to my body before terminating the Prednisone. My doctor is recommending six months; then surgery to address the mechanical facial distortion.
Hardening of the arteries one prerequsite for heart attacks and diabetes seem much more dramatic than a bulging eye. Appreciate any insight on my situation.
Thank you.

[Anonymous]

#1078208

Hi garrisons,

This is the perfect issue to discuss with your doctor. Weighing the pros and cons of the medication side effects against your possible loss of vision is very important. There are other options (directed radiation is one), with their own side effects and concerns, but the full discussion is important, and your feelings are important to consider as well. Perhaps you have issues with your family health history that need to be discussed. EVERYTHING that concerns you should be fully discussed.

Check in with your doctor ~ get an appointment if you can’t do a phone consultation, but make sure you have this discussion with them. Remember, it’s not really “just” a bulging eye — your vision is at risk if the swelling becomes too severe, and sometimes the bulging is only minor even though the pressure inside the eye cavity is much worse.

Remember also that the side effects are not “guaranteed,” it is just a list of various side effects that have occurred in certain patients. It is not a laundry list of everything that will definitely happen to you while taking this drug. I admit it’s a risk, I’m not minimizing that. I’m just saying that every element of your current condition needs to be considered.

Talk with your doctor.

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1078209

I am unclear about what kind of doc recommended this high dosage for 6 months! I was treated for TED by a neuro-opthalmologist that specialized in Graves patients. This particular doc did not agree that Prednisone was “worth” the risk of other conditions (as you listed in your message). I only took small dosage for about 6 weeks (no more than 25 mg a day_ and it made me very nervous, led to inability to sleep and I bloated up like a big ol’ frog! I gained 30 lbs in no time – was hungry all of the time! I hope you will discuss this with your PCP and a specialist! Also, I was able to have radiation treatments to the muscles behind the eye that stopped the progression of the muscle swelling, thus reducing the bulging. A few months after those treatments, this same specialist did eyelid retraction surgery to make sure eyelids were closing all of the way. I no longer have to use eye drops or gel. The bulging was causing blurred and double vision – nothing to fool around with. The pressure could have affected the optic nerve if it was not dealt with. TED has a cycle – goes from a “hot” phase to a “cold” phase – they wait for the cold phase before treatments. Keep reading, reading – and ask those questions. Joy in NoGA mtns.

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