Hi Amy. A lot of people have asked this question during the time I've been on here. I myself asked for advice and got a lot of helpful answers. If you go to the top box above discussion topics you will see a box saying IV steroids-all kinds of info there.

From my knowledge steroids after acute exacerbations early in the disease seem to be helpful at getting you back to 'baseline'. Later in the disease process (where I am) not so helpful. I've done it 3 times and with one side effect one time. Extreme fatigue. And not much help from it either. Doing it 1 more time to see and thats probably going to be it for me.

Side effecis of hyperness, insomnia, metallic taste in your mouth seem most common, especially early in the disease from what I have read.

The long-term risks can be significant, eg. the need for joint replacement, development of diabetes being the two that concern me the most. Everyone is different. Do a search on the search box and you'll find a lot of info. Good luck.

Melanie

I guess you will have had the treatment by now. My first and only IV steroids made me feel much better but I had one day during the five day treatment when I felt quite awful but it did pass.

The benefits continued for several months by which time the worst symptoms had lessened and I was better able to cope.

I have been very reluctant to use steroids although i have had two oral treatments since but the long term side effects are worth weighing up.
The net will give you pleny of info but your doctor should explain this to you.

My side effects from the IV steroids were an insatiable appetite, acne, irritability and restlessness.

The steroids gave me more energy, but I couldn't walk or see and it made me extra moody. I also ate non-stop. Unfortunately I gained 10-15 lbs easily because I was eating pure junk.

If I had to do it again, I would stock my fridge with healthy food, wash my face more often and buy a good cover up and warn the people that are around me most often that I am not myself.

I also got "moon face" but there's not much you can do about that...

I've only had one and i didn't have any side effects. I'm considering it again but not really sure if I want to risk long term side effects. I hope all goes well for you. Good Luck!

THANK YOU ALL! It means so much to me that you all read my question and answered it. We are in this together RIGHT? I will let u know how it goes...

Hyper, insomnia, sweating, increase in appetite are all part of what this hormone naturally does for you. However in natural lower doses you just feel awake and hungry in the morning not all day and night long too as when you get the higher dose of IV steroids.

If you can get the IV treatments in the morning that might be a bit better. Keep lower cal snacks handy because you are going to want to eat afterward and your not going to want to be eating high cal treats all the time. Many people gain a lot of weight on steroids for this reason.

When you are done with the steroids talk to your doc about increasing calcium citrate, potassium, magnesium, Vit D3, etc because steroids leach and reduce absorption of many of these items. So you want to replace what you lost to reduce risk of neg side effects in the long run like low bone density, etc.

Best wishes,
EP

I did a 5-day steroid IV in hospital, walking improved while I was there but then went back to where it was.

Gained 10 pounds while in the hospital, will surely think twice before I do it again.

Oh and they couldn't find a vein - first time I've ever had that problem. Took 3 different nurses and 6 needle sticks. Ugh.

I am doing my iv's in the mornings, I have 2 left. things are good so fair. I am already taking Alive women's energy .... Thank you all !!!!!