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Post by elaine on Mar 23, 2015 21:54:25 GMT
Have any of you had IV Steroids?
If so, for how long? What were your side effects? Anything you would suggest to prepare for them?
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Post by anonrefugee on Mar 23, 2015 21:56:53 GMT
Oh no. I hope this isn't sign your eyes are still hurting!
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Post by beebee on Mar 23, 2015 22:05:44 GMT
I have had IV steroids for my eyes. I was diagnosed with NAION but I don't fit the profile so they think something auto-immune caused the NAION. I took IV steroids for 4 days and then they switched me to oral. I'm not sure if this is the experience you are looking for.
I tolerated the IV steroids well. If I could have stopped there, I think everything would have been fine. But I was on steroid for a long time so I developed some nasty side effects.
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Post by compwalla on Mar 23, 2015 22:13:10 GMT
For my particular auto-immune issue, steroids are just about the worst thing I could take so no. They can cause a nasty post-steroid flare even when they are tapered off. That would be the side-effect we seek to avoid by not taking them. I don't know if that counts as experience but it's all I've got.  |
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Post by hennybutton on Mar 23, 2015 22:15:52 GMT
My DH had IV steroids when he was in the hospital due to an ulcerative colitis flare that blocked his bowel. I think his blood sugar went up a bit and they had to give him insulin. He's not diabetic or anything, but increased blood sugar levels is a side effect of high doses of steroids. He was only on the steroids for a few days until the inflammation went away.
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lesley
Drama Llama
My best friend Turriff, desperately missed.
Posts: 7,182 
Location: Scotland, Scotland, Scotland
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Post by lesley on Mar 23, 2015 22:17:11 GMT
I've only had IV steroids once, and they were miraculous. I have RA, and my hip was so painful I couldn't walk. I remember dragging myself in to see the rheumatology nurse and telling her I wasn't leaving until she fixed me! I don't remember dosage or type, just that I was rigged up to the IV for a few hours. It made a huge difference, although it took a couple of days to work.
I hope that whatever is causing you trouble, be it your eyes or something else, will soon be under control.
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J u l e e
Drama Llama
Posts: 6,531
Location: Cincinnati
Jun 28, 2014 2:50:47 GMT
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Post by J u l e e on Mar 23, 2015 23:17:12 GMT
I've only ever been given oral steroids. And they were wonderful! I hope IV steroids work for whatever you've got going on if you need to go that route.
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back to *pea*ality
Pearl Clutcher
Not my circus, not my monkeys ~refugee pea #59
Posts: 3,149
Jun 25, 2014 19:51:11 GMT
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Post by back to *pea*ality on Mar 23, 2015 23:46:41 GMT
I've never had IV steroids just oral steroids. My experience was that they worked - cooled down the inflammatory response to give me relief but then the symptoms would return with a vengeance.
Hope you find a solution for your issue soon, take care.
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Post by Lexica on Mar 23, 2015 23:53:51 GMT
I've only taken oral steroids and had an injection directly to the site twice. I hope whatever your issue is can be mitigated with the iv process. Is it your eyes?
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Post by angie3dpea on Mar 24, 2015 0:08:34 GMT
Elaine - I have graves also and have only experienced some pretty nasty eye bulging - the only time I've noticed double vision is when I've been super tired. My endo had me supplement with selenium for the bulging and while my eyes are not even still, I don't look like sloth from the Goonies anymore either. (Basically 1 eye was extra open all the time and one droops. Makes the natural asymmetry look 10 million times worse). Not sure if this would help the double vision also, but it may be worth bringing up! Good luck!
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Post by elaine on Mar 24, 2015 0:37:35 GMT
Yeah, it is my eyes. When I finally got in to see an endocrinologist on Friday, it turned into quite a circus. I was there for 6 hours and saw three endocrinologists, including the head of the department who treated HW Bush for his Graves when he was president, two opthomologists, including the head of opthomology, and a neuro-opthomologist. By the time I had seen all the optho's, given blood, and got more eye drops, it ends up I was the subject of Endocrinology's grand rounds and they wanted me back today. So, I apparently have a very active case of TED - thyroid eye disease - which goes hand in hand with the Graves. I have double vision if I look in any direction but straight. My eyes are VERY puffy. The fear is that if this keeps up, the inflamed muscles can compress the optic nerve causing a loss of vision.  The endocrinologists - many who haven't seen a case of TED (it is a military teaching hospital), so several more came to see me today and have me follow their finger with my eyes so they could ooh and ahh - want to start me on IV steroids. It is similar to the going treatment for MS - 12 weeks of a weekly infusion of IV steroids. It supposedly has lower side effects than oral steroids, but can cause liver problems in a small number of people. They wanted to start today, but we're going to Florida next week for Spring Break, so they want to start Monday after Easter instead. I am nervous about the steroids, but feel better about them than what opthomology wants to do. I'll go back in the beginning of June and they will then decide whether or not to use radiation to my eye muscles and or surgery to remove part of the bones in my orbital sockets to make more room for my inflamed eyes. I am hoping that the steroids work. No one I know has done IV steroids, but I knew that RefuPeas would probably have helpful info - I was right! |
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Post by SabrinaM on Mar 24, 2015 0:42:30 GMT
What an ordeal, Elaine. I'm so sorry you're dealing with this.  I hope you're able to find something that works! |
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Post by Blind Squirrel on Mar 24, 2015 0:53:50 GMT
I'm sorry you are dealing with this. I have only had IV steroids once (I have MS). I had the IV and then a few weeks of high dose oral steroids. The IV gave me a metallic taste in my mouth, but that was about it. Sleeping soundly was difficult, but the worst part for me was with the withdrawal from the steroids (hot flashes, aches, etc). I followed the tapered decrease, but that part was rough for me.
Best wishes for a speedy recovery.
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Deleted
Posts: 0
May 20, 2024 12:45:15 GMT
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Post by Deleted on Mar 24, 2015 0:59:42 GMT
Sorry Babe, this is awful! I sure hope the steroids help. You will be in my prayers.  |
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Post by anonrefugee on Mar 24, 2015 1:00:15 GMT
elaine, If ever we needed a dislike button, this would be the time!!!! I'm glad you've got attention of experts, wish it was for your running times, social opinions, or something else!
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Post by Basket1lady on Mar 24, 2015 1:23:06 GMT
Did you see Dr Tagg at Walter Reed? I saw him a few times with eye problems caused by vertigo due to a sphenoid sinus infection that ate into my middle ear.
I'm trying to remember. Are you diabetic? Steroids can cause your blood sugar to be all over them place for up to a month after you finish taking them.
I was on antibiotics nine times that first year. The doctors wanted to do antibiotics, but held off, as I'm insulin dependent already and it would have made my blood sugars difficult to control. I was also in preterm labor (years ago) and they held off on the steroid shots to develop DD's lungs so that my BS wasn't high when I delivered. Luckily she stayed put.
It isn't a decision to be made lightly, but sometimes it's just necessary. I hope you can find some relief.
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Post by elaine on Mar 24, 2015 19:20:24 GMT
Did you see Dr Tagg at Walter Reed? I saw him a few times with eye problems caused by vertigo due to a sphenoid sinus infection that ate into my middle ear. I'm trying to remember. Are you diabetic? Steroids can cause your blood sugar to be all over them place for up to a month after you finish taking them. I was on antibiotics nine times that first year. The doctors wanted to do antibiotics, but held off, as I'm insulin dependent already and it would have made my blood sugars difficult to control. I was also in preterm labor (years ago) and they held off on the steroid shots to develop DD's lungs so that my BS wasn't high when I delivered. Luckily she stayed put. It isn't a decision to be made lightly, but sometimes it's just necessary. I hope you can find some relief. I saw Col. Wroblewski in opthamology and a female resident named Dr. Seager. I don't remember the name of the neuro-opthamologist - I'm not sure they told me.  I'm not diabetic and just gave a fasting blood sample two weeks ago - blood sugar and cholesterol levels were all really good, both of which they said may go wonky with the IV steroids. So, that is something going for me. :)They also gave me a bone density scan yesterday for a baseline. Normally it takes a month to get in for a bone density scan, but they managed to get me in right then and there - another plus, since I've been needing to get one done for the past year. |
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Post by scrapmaven on Mar 29, 2015 2:23:00 GMT
I'm sorry that you have this disease. I have done a lot of IV steroids in major amounts when they were getting my asthma under control. So, don't judge by my story. Wish I could offer you some positive advice, but you might get "moon face" and gain weight. They can induce sugar cravings. Just be mindful. The weight comes off over time. Also, my bones did become marshmallows, but I was on heavy duty doses for a long long time. If it saves your vision then it's worth doing. Steroids are nasty, but they can save your life. I wish you a healthy course of treatment. They'll ask you to monitor blood sugar and they're already watching your bone density, so you'll be in good care. It's all about saving your sight. Keep that in mind.
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I hope you're able to find something that works! 
