Does anyone take pulse steroids. Doctor is about to start me on them. Just was wondering if there were any side effects to look out for and also, how are you handling them and how is it or not working for you. thanks.
-
-
I was on high-dose IV pulsed IV steroids for years. A couple of years of 1000 mg once a month, a couple of years of 1000 mg every two weeks and a couple of years of 500 mg every two weeks before I finally weaned off. The only short-term side effects applied to the day of the infusion -- increased pulse rate, stomach upset and restlessness with inability to sleep that night. It's important to note that a one-time infusion per month is different that the three- or five-day dose used to treat a flare. So bear that in mind as you read posts from folks who have confused pulsed steroids with multiday treatment of a flare and describe the more pronounced effects of a multiday treatment.
Each single dose wasn't much of a problem for me. The real consideration is what a year or more of pulsed steroids does. As a trade-off for the benefit gained, there is demineralization of bone (leading to osteoporosis) and the increased risk of diabetes, glaucoma a cataracts, among other things. You might also experience the slowly creeping water-weight gain that comes from long-term pulsed steroids. When I got off pulsed steroids, ten pounds just fell off of me.
There are a couple of papers in the medical literature that cite a benefit to pulsed steroids that lasts a year or two. The benefit doesn't seem to last longer than that. You'll have to do your own research to see if there's anything more recent in the literature that contradicts that finding. Also, the particulars of your own situation might modify that. In other words, your mileage may vary!
-
Thanks for all your info. I have been on the 3 or 5 day IV steroids for flareups. just kept me awake and sugar was up. He decided to put me on just one iv a month every month until new meds come out. I have been on avonex, copaxone and gilyena(allergic to). decided not to do tysabri. hopefully something comes out so i don't have to be on them a long time. hoping it will help the vision and walking, and spams. nothing seems to help. after the 3 and 5 day treatments i usually feel a whole lot better. speech usually comes back immediately, but walking takes a little longer. i am hoping this will stop it before it even starts.Originally posted by Redwings View PostI was on high-dose IV pulsed IV steroids for years. A couple of years of 1000 mg once a month, a couple of years of 1000 mg every two weeks and a couple of years of 500 mg every two weeks before I finally weaned off. The only short-term side effects applied to the day of the infusion -- increased pulse rate, stomach upset and restlessness with inability to sleep that night. It's important to note that a one-time infusion per month is different that the three- or five-day dose used to treat a flare. So bear that in mind as you read posts from folks who have confused pulsed steroids with multiday treatment of a flare and describe the more pronounced effects of a multiday treatment.
Each single dose wasn't much of a problem for me. The real consideration is what a year or more of pulsed steroids does. As a trade-off for the benefit gained, there is demineralization of bone (leading to osteoporosis) and the increased risk of diabetes, glaucoma a cataracts, among other things. You might also experience the slowly creeping water-weight gain that comes from long-term pulsed steroids. When I got off pulsed steroids, ten pounds just fell off of me.
There are a couple of papers in the medical literature that cite a benefit to pulsed steroids that lasts a year or two. The benefit doesn't seem to last longer than that. You'll have to do your own research to see if there's anything more recent in the literature that contradicts that finding. Also, the particulars of your own situation might modify that. In other words, your mileage may vary!Comment
-
weight gain
Personally I gained quite a bit of weight, from size 14 to 18-20 while taking steriods once a month. I also found myself craving about a week before treatment. Would not do it again[I]Tellnhelen
Progressive Relapsing MSComment
-
My neuro has me on an every 3 month treatment. I used to love them but last time I did not see much improvement. Just had neuro appt. today and we are going to keep on 3 monh schedule till end of year and see. Side effects were not major for me. First few times, i was mopping my floor at 3 in the morning, but after that I settled down. They come to my house to do them.
Hope they help you.
JudySzComment
-
Curious to know, did they put you on a steroid pack after the IV?Originally posted by tellnhelen View PostComment
-
Originally posted by JudySz View Post
just did my first one yesterday. hoping it helps. started having problems again sunday. I'm with you with the late night. I think I was up until 4. could not sleep. then again everytime i got comforable i was up using the bathroom every 2 hours. at least the fluid comes of fast.Comment
-
LOL Judy! I've been exactly that way before.Originally posted by JudySz View Post
The pulse program I was on did help cut down the number of flares I had been having.
I had all of the classic side effects.
One I get that most don't I guess is terrible headaches during and after the drip. Anyone else get those and have a solution?
It helps some to add an extra 10-15 minutes to the IV time, but it still kills my head.
My Dr. gave me some Rx (don't recall what), but it didn't help much.
Even though the pulse program isn't ideal, the benefits have helped me.Comment
Comment