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CuriousGirl

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Joined
Nov 7, 2010
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26
Diagnosis
10/2012
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US
State
CA
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sacramento
This site and subject is all so new to me. I'm active on other forums (celiac disease and diabetes). Now, after just under 2 years, I've been diagnosed with CIPD.

I had my first ivig treatment October 26th - 29th 3 hours a day. I'm not sure if it's my imagination, but could it make my symptoms worse? :-(
 
Hi Curious Girl. My husband has CIDP and receives IVIG every 3 weeks since 2007. No the IVIG won't make your symptoms worse, but people do experience side effects to the IVIG such as malaise, bad headaches, stiff neck etc. The secret is to drink lots before, during, and after treatments. Many people need to pre-medicate with an anti-inflammatory and Bendryl to keep the side effects at bay. The GBS/CIDP Forum is the place to get answers about IVIG and CIDP.
Laurel
 
Thank you, Laurel. I appreciate your response.

I felt great the first few days after my treatment. All I experienced during was a headache.
 
My husband used to get these and he could not get out of bed for at least two days after the treatment. Eventually they stopped them because they could not prove they were working. Then again, he has a severe immune deficiency.
 
so the treatments didn't work for him in any way? i'm still waiting for my insurnce company to approve 6 more treatments to see if they help. If not, what's next?
 
I had 6 IVIG treatments at the VA. No worse but no better. good luck
 
Insurance company denied more ivig til I see doc on 12/2. I seem a little better after the one I had, but I'm not sure if it's my imagination or just hope. I hope they approve at least 2 more because I understand it takes 2-3 treatments to see a difference.
 
I rec'd my first IV Ig infusion on Monday, 12/06/10 and today (Wed) have been hit hard with flu llike symptoms. Headache, upset stomach, dizziness. During the process no one advised increasing fluid intake, so I'll step that up. All I was told was to take Ibuprophen or what ever I usually take for aches and pains. I'll continue to follow this thread with interest!

Thank you
 
Hey Curious Girl
I hope you get approval for more treatments and see some results. My spouse only made it an hour and a half into his first IVIG treatment, when he had a severe allergic reation. He had to be rushed to emergency, and obviously we didn't continue this type of treatment. Good luck to you!
 
so the treatments didn't work for him in any way? i'm still waiting for my insurnce company to approve 6 more treatments to see if they help. If not, what's next?

One of the first line treatment for CIDP is steroids. So that may be the route you have to go as they are much cheaper. All current literature suggests that pulse steroids are the best method of administering them to minimize the side effects i.e. big does oral or IV weekly versus taking a smaller dose daily. If you go that route, your doctor will have to monitor you for elevated blood sugar, osteoporosis, and cataracts (all side effects to long term steroid use). Good luck getting more IVIG.
Laurel
 
I rec'd my first IV Ig infusion on Monday, 12/06/10 and today (Wed) have been hit hard with flu llike symptoms. Headache, upset stomach, dizziness. During the process no one advised increasing fluid intake, so I'll step that up. All I was told was to take Ibuprophen or what ever I usually take for aches and pains. I'll continue to follow this thread with interest!

Thank you

The increased water intake is critical. Hubby just did his two days of IVIG that he gets every 3 weeks, and he was very good with remembering to guzzle water two days before, during and after. Knock on wood no side effects this time since he guzzled. But he has his usual fatigue post IVIG--nods off in his chair and has no energy for 2 or 3 days after.
Laurel
 
Hi,

I copied and pasted the next paragraph from a different thread I responded to under the MMN (multifocal motor neuropathy) section on this forum. That's what I have and why I get IVIG.

I had terrible headache and flu symptoms after my first treatment. It went on for a week until I called the Doc. I have had the same pre meds now since Jan of 2007. Salumedral (sp?) = IV of prednisone, 2 benydryll, 2 tylenol, and one compozine. The compozine is a for nausea and headache. It is all wonderful and I have never had a side effect from IVIG since. I am a little hyper from the prednezone and my face needs no blush. I have written this up several times but Doctors give different pre meds. These work perfect for me.

I have IVIG every 3 weeks. Had it today as a matter of fact.:) I also drink plenty of water but still need the additional pre-meds.

Hope this helps. Best Wishes, Peg
 
Hello to you all.

So, I had my 2nd ivig end of December, and 3rd end of January. My followup appointment with neuro is next Thursday the 17th.

Unlike the 1st ivig in October, my symptoms are not much better. after December's ivig there was no improvement and after January's ivig, I'm not sure and I'm afraid to get my hopes up...progress must be very slow since symptoms began very slowly...over 2 - 2 1/2 years.

My diagnosis of CIDP is still questionable. I think that's the problem with the insurance company only approving a total of 3 treatments because it may also be motor neuropathy...I'm diabetic too. Either way, if it helps, it should be approved.

So on the 17th we'll do another nerve conduction study and see if it's improved at all.

I'm just wondering if anyone else had the same slow recovery...if recovered at all?
 
My husband had 3 IVIG treatments last year. His neurologist thought he had CIPD or MMN. Each treatment consisted of infusion for 5 consecutive days. During the first treatment, he got noticeably better. After the second treatment, nothing. He could barely complete the 3rd treatment because he became so weak. After the 3rd treatment, they diagnosed him with ALS.
 
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