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ivig question

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15 years 6 months ago #2874 by freckles
ivig question was created by freckles
if you were planning on raising your platelet counts for surgery, and you were going to do ivig, do you pretreat with steroids? if it was strongly recommended to use steroids, and i was only planning this one time bump, would it make sense to just do the steroids alone for the bump? my plan is, if i stay asymptomatic after the drop, i would continue to not treat. so why do both ivig and steroids. does that make sense?

freckles
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 6 months ago #2885 by Sandi
Replied by Sandi on topic Re: ivig question
Freckles:

Define "pre-treat with steroids". Do they mean an IV along with or prior to the IVIG or an oral dose dys or weeks before the IVIG?
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15 years 6 months ago #2886 by tortie
Replied by tortie on topic Re: ivig question
It sounds like the Dr is doubling up to ensure a better count. I don't think it's that unusual. It may help increase your count as well as keep them up a bit longer after surgery. Do you know what your counts are 3days, 5days, 2 wks after IVIG alone or with pred alone. It also would depend on your usual count and what kind of surgery. I prefer IVIG over pred.
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15 years 6 months ago #2897 by freckles
Replied by freckles on topic Re:ivig question
it wasnt the doctor who recommended it. i have read that sometimes to alleviate side effects of ivig, you take benedryl and steroids. are people here who treat with ivig also taking steroids?
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 6 months ago #2898 by Sandi
Replied by Sandi on topic Re:ivig question
Usually, a pre-treatment with IVIG would include IV steroids, most likely Solumedrol. I think I would prefer steroids over IVIG, especially short term.
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15 years 6 months ago #2931 by CindyL
Replied by CindyL on topic Re:ivig question
I take 5mgs of pred every day. If my counts drop below 20, I treat with IVIG. I do get Benadryl, Tylenol and something else before it. When I was prepping for my splenectomy, I was given IVIG for 3 days before to bring my counts up. On the day of surgery, I was given steroids by IV.
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15 years 6 months ago #2932 by juliannesmom
Replied by juliannesmom on topic Re:ivig question
My daughter's pre-treat for IVIG was tylenol and benadryl, kept up every few hours throughout the infusion and for a day or so after. She also got a shot of solumedrol and a course of small-dose decadron after the infusion. We've never pretreated with steroids. If the steroids work, they'd be my preference for a short-term rise in platelets, and that was our hema's choice to give Julianne a rise for her dental work a few months into her ITP. Depending on the type and location of surgery you're having, the surgeon may not want you on steroids afterward, due to the risk of infection.
Norma
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15 years 5 months ago #3021 by gsh
Replied by gsh on topic Re:ivig question
I've only had both at the same time if I had a really bad platelet crash (eg. mouth blisters). On a normal treatment of IVIg I don't take steroids but I get a blasting headache a few days later and maybe I wouldn't if I did.

Cindy - if you stop the 5mg/day do your platelets tank immediately?
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15 years 5 months ago #3026 by freckles
Replied by freckles on topic Re:ivig question
thanks for all the responses. well, here's the outcome. i had an opthamaloigical exam today. the good news, no retinal tear or detachment, so no surgery. no need for ivig..yeah..also asked the doctor about platelet count for repairing a tear by laser. this from the massachusetts eye and ear and they also do the same exam twice by two different doctors, which i think is cool since i am obsessive, compulsive. anyway, they both said you can repair damage to the eye by laser regardless of platelet count. good news for us i would say. so, the floaters were caused by something called posterior vitreous detachment. apparently the millions of little fibers connecting your eyeball to your retina can pull away and float around inside your eyeball. very common wiyh age, no treatment, but once you have one it makes it important for yearly eye exams to be sure you dont end up with a tear. so there you have it.


freckles
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15 years 5 months ago #3030 by CindyL
Replied by CindyL on topic Re:ivig question
GSH, it seems like all of a sudden, my counts are dropping with no explanation. Since my splenectomy in /06, I've been able to get away with 5mg/second day. In /08 I went back to work,(after being out for 4 yrs),and bam, counts went down. First IVIG treatment since before splenectomy. Then 4 months later, another drop and so on and so on. I was getting 4 months out of a treatment. When I saw my hema dr.in March, he wanted to up my dosage. I said I would rather take the 5mgs every day. I haven't been on the daily dose long enough to really see if it's going to make a difference. I've had 3 treatments just this year! I really don't want to do any higher dose of the pred! So we'll see what the 5mgs every day do.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 5 months ago #3048 by Sandi
Replied by Sandi on topic Re:ivig question
Good news, Freckles!