[hyperm]

#1069628

Hi Carla,

Thats such a shame for your little girl it must have been so frightening for her and you!

I have never had steriods for GD but I am chronic asthmatic and from a younge age (6 years old) was in and out of hospital receiving high levels of IV steriods then oral for a long periods of time then going on count down steriods eventually to come off them. That happened at least twice a year if not more and also at times when I wasn’t hospitalised I was on high doses of oral steriods. My mum had to sign a disclaimer once because I had so many episodes where I had been prescribed steriods over short period of time. My hospital doctor used to call them the wonder drug as they really did do the job but they also give you false energy etc… My biggest problems with being on such high doses was that I hallucinated and would pull out my bed chasing lights etc.. or felt as though I was a tiny doll in a large real size house…..weird stuff eh? Such a worrying time for my mum too!

I have never had any problems with my liver and I hope the case is the same for you little one. I hope you get a more clear answer and perhaps you could ask the medics for more reassurance as to what steps they are taking to regularly monitor her livers condition? Aswell as blood tests they can also ultrasound etc…

Sending lots of get well vibes to your little one and I hope she isn’t on them too much longer. xxxx

[cathycnm]

#1069629

Carla – Steroids are, indeed, wonder drugs for inflammation. Over the years, we have learned how to give them more safely. I am sure they will be monitoring her labs closely to watch for complications of the med. I do advise that you let your doctor know your concerns, though – and find out what the plan is for monitoring labs, etc.

[carla]

#1019145

My 13 year old daughter was diagnosed with Graves’ disease 6 weeks ago and Graves Orbitopathy. She has had an episode of optic nerve compression and was hospitalised for 4 days where she received 2 doses of IV pulsed steroids and is now on 40 mg oral steroids every day. The plan is now for 12 weeks of once a week IV pulsed steroids. This treatment seems so extreme, but the opthalmologist has said that if she doesn’t have this, she could go blind. Has anyone received this treatment? I would love to know if it worked to resolve your eye problems and also how did it make you feel? Did you have any side effects? Remember we are talking about a 13 year old 48 kg child here which I think is very scarey stuff. Esp. when I read that she could develop fatal liver failure from the treatment.

[Sue_Conard]

#1069630

Hi Carla! Yes, I’ve had 2 treatments of IV steroids (1000 mg. of Solumedrol 3 days each) for my Graves thyroid eye disease. I had the treatments within 2 months apart b/c I was experiencing the same pressure on the optic nerve too. I found out after the treatments that this type of treatment lowers your immune system so I ended up with the shingles (over Christmas, YEAH!). I had a very red, flushed face for a few days and also got kidney stones from the treatment. I didn’t realize that you must drink lots and lots of water with these treatments so be sure she has plenty of water around to flush her kidneys. Other than those 2 IV treatments, I also had the 10 days of radiation to the enlarged muscles in my eyes and everything has proven successful for taking the pressure off the optic nerve. I still have double vision, but I’m not experiencing the pain behind my eyes and in my head that I had prior to the two treatments. I know you must be worried about your daughter…it’s a horrific disease for anyone to have to go through, especially at her age. Hang in there and good luck. Let me know if you have any addl. questions.

[carla]

#1069631

Hi Sue, (and others)
Can you clarify for me…did you have 1 gram IV on one day and then 1 gram on the next day and then this treatment repeated 2 months later? Did you have any oral steroids after you had received the IV doses? I have been advised that RAI is not an option for a 13 year old child and that IV steroids or if that doesn’t work, decompression, are the only choices. I would like to add that apart from the fact that my daughter lost her colour vision in one eye and has very puffy, red (inflammed) eyelids, she has no proptosis, no double vision, her eyes feel normal. The 3 months of once weekly IV steroids is to prevent a relapse so they tell me.

[Sue_Conard]

#1069632

Hello Carla: I had 1000 mg. Solumedrol every other day for 1 wk. total. It ended up being 3 treatments and yes, I was also on 10 mg. of prednisone for several months, 3x a day. I’ve had no proptosis, but double vision, puffiness below my eyes, some inflammation. The reason for the second treatment was because of severe pain in my head and temple area (I guess it was pressure). At that time, I asked the dr. if I could go blind from this disease and his response to me was, "No one has ever gone blind under my treatment". He believes in aggressive treatment to subside the long-term affects, so I went along with his recommendations and grateful I did. I had one treatment around Christmas last year and the second treatment end of January, first part of February. He measured my eyes last month (I go once a month to him) and claims I’m still "unstable" for surgery to realign my eyes b/c my numbers are still fluctuating; however, I haven’t experienced any pain since February and my treatments. I have no problems with colour vision although the dr. checks me monthly for that too. RAI is not an option for me either with GD b/c of the eye involvement. Please let us know if you have any additional questions and please give us an update on her condition.

[carla]

#1069633

Hi Sue,
How long have you had Graves Disease and Graves Orbitopathy for now? How old are you? (not exact, don’t worry, between 20 and 30 or ???)

[RhondaG4]

#1069634

Hi Carla,
For about a year before I was Dx with GD, I was in the ER for an IV of Decadron 8mg for headaches. I also had a brain bleed stroke tho before that. Then they " Neuro Dr" tried keeping me out of the ER with 12 tabs a month of 4 mg each. Besides right before Dx I had 1gm IV solu medrol. I’ve gained weight, but no liver damage. I honestly think the steroids is what has kept the TED at bay so far. Now that they.."my wonderful ex ENDO" has stopped my steroids, I’m finding another Endo and I’m going to go back to the Eye Dr to see if the pain and pressure I have behind my eyes could be TED. Best of luck to you and your daughter. Hugs Rhonda

[Sue_Conard]

#1069635

Hi Carla: I started going to the dr. in August ’08, but just DX Oct. ’08 when the dbl. vision started. I’m in my early 50’s and one symptom I had, that I forgot to tell you about, was the stomach upset issue. I ate Pepto Bismol tablets several times the entire wk. I was taking the IV steroids. Yes, I too, gained 20 lbs. with the meds and have been unable to take it off to date, no matter any activity level. Prior to the muscle/joint pain, I was exercising 3 to 5 times per wk.

Hello Rhonda: Yes, PLEASE go back to your eye dr. I have pain and pressure behind my eyes with TED. Good luck and please let us know what your dr. does for you.

Hugs to both of you.

[carla]

#1069636

Took my daughter to see the opthalmologist this afternoon and he wasn’t happy. Apparently her left eye is showing deterioration, as in folds forming at the back of the eye. Sent us off to the hospital for 500 mg IV pulsed steroids, to be repeated in one week. Got the impression that the endocrinologist and paediatrian are not overly happy with the steroids (she has already had 2 1 gr. pulsed iv steroids, then 50 mg oral, then 40 mg oral, then 30 mg oral and now this. Apparently this regime is now: 500mg iv once a week for 6 weeks and then 250 mg iv once a week for 6 weeks. They are going contact some super duper guru in the states for his verdict on this treatment, but meanwhile, have started it.

[Sue_Conard]

#1069637

Hi Carla: Well, just got back from the GD eye disease dr. & off I go for my THIRD treatment of Solumedrol treatments and I’m MAD!! I HATE THIS DISEASE!!!! I’m going Thurs., Sat. & Mon. for 1000 mg. ea. session. The inflammation in my eye won’t let up and I"m at a 20 prism right now…my symptoms will not let up so he feels this will help me. Say a prayer that I keep my sanity through these treatments!! ” title=”Sad” />

[RhondaG4]

#1069638

Sue and Carla.
I’m prayin for you both and your daughter Carla. IV steroids aren’t the greatest, but at least we have some treatments that help. Hugs and Prayers Rhonda

[Sue_Conard]

#1069639

Thanks Rhonda…please let us know when you make it back to the eye dr. too!! I’m soooooooo NOT LOOKING FORWARD to this round of steroids. They seem to have the opposite effect on me and I sleep for 12-14 hrs. a day, instead of being energized…one side effect I always tend to have though is the mood swings. Watch out world!!

Carla: Please let us know how your daughter is doing too.

[carla]

#1069640

Hi Sue, oh you poor thing having to have more iv steroids. My daughter had her second dose of 500mg Methylprenisolone IV yesterday, 10 more weeks/treatment to go. It is very interesting to hear that you are really tired as she has been saying all afternoon that she is so tired, I read her your email and finally she has decided to have a sleep. Just hearing that you were feeling like she is made her feel ok to rest. Thanks for being there, albeit on the other side of the world. (we are in Australia). We are back to the paediatric ophthalmologist on Monday and I am so scared already. It seems that every time we go there it is bad news.
Oh and Rhonda, weight issue, wow, she is so paranoid about her weight anyway, you know what 13 year old girls are like. Now she is freaking that she will get fat (her words) with all these steroids. It feels like this is all about one step forward and 2 steps back all the time, isn’t it.

[Sue_Conard]

#1069641

Hello Carla…that’s EXACTLY my husband’s words, 1 step forward and 2 back all the time. I have my second treatment today…I noticed yesterday that I had a beautiful red glow all over my face, like I had been in the sun for days from the treatment. Someone actually asked me if I’d been in the sunshine and I said no, just tons of steroids. I’m sure your daughter is worried about gaining weight, but what I’ve come to realize is that once I get well, I’ll worry then about my weight. For now, I just want to feel better…After my first treatment on Thursday, as CRAZY as it sounds, I woke up and had gained ANOTHER 2 lbs. on Friday morning. I did read in a magazine though yesterday to drink 2 cups of dandeloin root tea (you can get at the drug store) because it helps with water weight. I believe most of this MUST be water weight from the steroids b/c I’m not eating anymore than I did and I’m not hungry from the metal taste in my mouth. I think I’m going to buy some to see what it’s like and if it helps me. Tell your daughter we’ll get through this with her, that we’re here for her, all the way across the world and we want to just see her get well, AND SHE WILL!! Hang in there.

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