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IVIG- feel worse before better?

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Unread 02-01-2012, 10:14 PM   #1
bny806
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Default IVIG- feel worse before better?

Those of you that do IVIG.. do yall feel more weak the night of the IVIG and the next day before feeling better?? My ivig was wearing off this past week, but I got another round of IVIG today and I feel more weak tonight (granted I'm sure the benadryl they give me doesnt' help any either)... Last round, I felt bad and weak, and then 4 days after the IVIG felt like superwoman for about two weeks! it was pretty amazing.. anyhow I was just curious if anyone else feels this way?
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Unread 02-02-2012, 06:08 AM   #2
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I get infusion today. I'm getting 8 treatments and this one is the 6th. I have had different side effects. Mild headache, flu like symtoms and on my last infusion which was Monday I had the same effect as you. I was so weak tuesday I couldn't sneeze, chew ect. I was ok yesterday. We are trying to get some of my strength back with these 8 infusions. They space my infusions a couple days apart due to my age. I haven't had any real bad side effects and my infusions last about 2 hours. If I haven't had one in say a month the first one will run at a lower rate (2 1/2 hours).
Mike

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Unread 02-02-2012, 08:03 AM   #3
alice md
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Originally Posted by bny806 View Post
Those of you that do IVIG.. do yall feel more weak the night of the IVIG and the next day before feeling better?? My ivig was wearing off this past week, but I got another round of IVIG today and I feel more weak tonight (granted I'm sure the benadryl they give me doesnt' help any either)... Last round, I felt bad and weak, and then 4 days after the IVIG felt like superwoman for about two weeks! it was pretty amazing.. anyhow I was just curious if anyone else feels this way?
Yes, I reached a point where I asked my neurologist if the IVIG I was getting was extracted from the blood of MG patients.
After a few months we both reached the conclusion that in balance it caused more harm than good. I too had a few very good days, after each round, but it wasn't worth the price.
I hope you have a better experience with it.
Sometimes changing the brand of the IVIG may help. (in my case it didn't, but for some it does make a difference).
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Unread 02-02-2012, 12:00 PM   #4
scrubbs
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I have been receiving infusions for 3 years now and I have never had the amazing results you have but I do feel a little weaker and tired after.

There has been a significant improvement in my condition this past year so my neuro wants me to stay the course on all my meds except prednisone. He is lowering the dose even though I would like to try to get by with a little less Cellcept and Mestinon.

Tony
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Unread 08-23-2012, 12:12 PM   #5
oobadooba
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Smile Ivig

I just started my infusion treatments in June. So far the only side effect is headache, but no tiredness yet? The Doc also has me on Prednisone & celcept. I try my best to stay active like walking alittle, going outside to water or just stay busy! Good luck to all us MGer's!!! We will get through it.

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I have been receiving infusions for 3 years now and I have never had the amazing results you have but I do feel a little weaker and tired after.

There has been a significant improvement in my condition this past year so my neuro wants me to stay the course on all my meds except prednisone. He is lowering the dose even though I would like to try to get by with a little less Cellcept and Mestinon.

Tony
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Unread 08-27-2012, 04:18 PM   #6
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Originally Posted by oobadooba View Post
I just started my infusion treatments in June. So far the only side effect is headache, but no tiredness yet? The Doc also has me on Prednisone & celcept. I try my best to stay active like walking alittle, going outside to water or just stay busy! Good luck to all us MGer's!!! We will get through it.

oobadooba
I received a four-day round of infusions that ended four days ago. I felt progressively weaker after each infusion session with difficulty even walking back to our car in the parking garage. However I don't know if it was due only to the IVIg or to the meds which I have recently started (Mestinon and Prednison). I am new to this, diagnosed with MG just two weeks ago. It's a confusing, miserable, scary time and it feels like I've taken three steps forward and six steps back. I wish I could write something encouraging but this is not yet my time for that. Mark.
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Unread 08-27-2012, 08:49 PM   #7
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Thanks so much yall, for your replies!! Photobug: After the first loading dose (3 days in my case), i got pretty bad aseptic meningitis (confirmed by LP, I had been admitted into the hospital before it all).. Anyhow, after that loading dose, I thought I might feel better, but then just chalked it up to it must be placebo effect.. as I didn't want to get my hopes up.. that's how my symptoms remained for the next 3.5 weeks, then I got my second round of IVIG and felt crumby, and then on the 4th morning woke up - grabbed my phone, and couldn't believe it!!! I could grab my phone without jelly fingers.. each thing I did - get out of bed and walk, grab toilet paper, get up from sitting pick up my kids, holding silverware etc.. was all like a new amazing experience.. I then realized just how bad off I had been for so long..
So, sometimes it takes a few rounds before you get the full effect.. Wishing you the best of luck!
THank you all for your replies!! I Hope yall are doing well! I'm not around here often anymore, as I am thankfully back at work, taking care of my little ones etc.. I get IVIG every two weeks, and it holds me pretty steady.. though not where I would want to be, it's acceptable for sure.. we probably need to add an immunosuppresant, but I"m worried about it with my job, plus two little germy toddlers!
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Unread 08-31-2012, 04:29 PM   #8
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Thanks so much yall, for your replies!! Photobug: After the first loading dose (3 days in my case), i got pretty bad aseptic meningitis (confirmed by LP, I had been admitted into the hospital before it all).. Anyhow, after that loading dose, I thought I might feel better, but then just chalked it up to it must be placebo effect.. as I didn't want to get my hopes up.. that's how my symptoms remained for the next 3.5 weeks, then I got my second round of IVIG and felt crumby, and then on the 4th morning woke up - grabbed my phone, and couldn't believe it!!! I could grab my phone without jelly fingers.. each thing I did - get out of bed and walk, grab toilet paper, get up from sitting pick up my kids, holding silverware etc.. was all like a new amazing experience.. I then realized just how bad off I had been for so long..
So, sometimes it takes a few rounds before you get the full effect.. Wishing you the best of luck!
THank you all for your replies!! I Hope yall are doing well! I'm not around here often anymore, as I am thankfully back at work, taking care of my little ones etc.. I get IVIG every two weeks, and it holds me pretty steady.. though not where I would want to be, it's acceptable for sure.. we probably need to add an immunosuppresant, but I"m worried about it with my job, plus two little germy toddlers!
Thank you nby806, my Neuro has never even suggested more than one IVIg. I will email him and ask him if he expects to schedule me for more if the first one doesn't "take." Doesn't seem that it did, but with the new meds its hard to tell what's going on...he says that the Prednisone may even worsen some symptoms before they get better, so I wonder if that is masking any improvement the IVIg may have produced. Yeah, I'm confused...that's for sure.
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