Starting my 4 day load up of ivig
July 4, 2012 at 5:23 pm
You should not expect any immediate improvement in strength and balance. IvIg is used to control the progression of the disease to allow healing to take place, but does not itself cause healing. Loss of strength and balance is caused by nerve damage and will improve as nerves heal. Nerve healing is a slow process.
AnonymousJuly 4, 2012 at 10:35 pm
My experience with IV-IG – was that it provided a very slight (almost imperceptible) increase in strength and no impact (or even acceleration) on the continued decline of my sensory nerves/ Prednisone helped reverse symptoms for a period of a maybe a week – then it was back to rapid progression
The only thing that worked – and it worked like a miracle was HSCT/ It stopped CIDP DEAD COLD in its tracks and my body immediately began to heal/ I was wheelchair bound – an my entire body was horribly impacted/ Within a month I was able to walk again/ Today it is almost like CIDP never happened/ All other treatments were like blowing on a boulder that was rolling down on me/ HSCT was like 10 tons of dynamite blowing up the boulder/ It was THAT dramatic/
I think my condition was tailor made for HSCT – that it is that I had a very rapid onset – Went from power walking a marathon to a wheel chair in 5 months/ I do not think I would have survived another 2-3 months/ The good part was that because my onset was so quick – my underlying nerve axons were still in relatively good shape/ All we had to do was stop the attack and allow my body to heal/ That’s what HSCT does – its literally like having a laptop plugged up with viruses and then re-loading windows – A total re-boot of the immune system/ Even got rid of all my allergies (no more hay fever) and I swear where my hair grew back there was no grey in it like before!
I think this should be front-line treatment/ Honestly I do not know why people waste time on the other ineffective treatments – when life saving life changing technology exists/ It is safe – easy to tolerate – and most of all IT WORKS!
Iam off for a bicycle ride! Happy Fourth of July Everybody!
July 4, 2012 at 10:42 pm
It’s wonderful that HSCT works so well, but until it moves from clinical trials to standard treatment, it will be rationed to those most in need of it.
AnonymousJuly 6, 2012 at 5:44 am
If you’re going to respond to the IVIG, it usually happens within 1-2 weeks after the loading dose. In some cases it can take 3 or 4 weeks. But this also depends on how long you’ve had CIDP. The longer you’ve had it, the less likely you’ll have a quick response.
As for what you’ll feel during the infusion, I usually didn’t feel much when I was on IVIG, though I did get headaches occasionally. Make sure you drink a lot of fluids during the infusion, that seemed to help me stave off the headaches.
IVIG didn’t really help me. The disease was stable, but it didn’t improve. I hope you have better results!
July 6, 2012 at 4:22 pm
caveman–when i was on ivig i felt better as far as fatigue goes right away—usually just a few days after the infusion. Unfortunately it did not work as well for my weakness, I continued slowly progressing even with the ivig.
July 6, 2012 at 4:37 pm
My daughter says IVIG makes her feel “tingly” inside. She has always had a drastic improvement within days of receiving a loading dose of IVIG. For some people it can take longer though. It’s different for everyone.
Make sure you stay hydrated! It is probably the most important way you can help yourself. If you get dehydrated you are more likely to get a headache or other side effects. So drinks LOTS of water!
Also, you can ask to be premedicated with Benadryl and either Motrin or Tylenol.
Make sure to report back on how you are doing.
AnonymousJuly 7, 2012 at 4:51 pm
Thank you all for responding to me. It sounds like I’m going to be wasting my time for four days. I have had cidp for at least two years. Before that, I had just the standard peri feral neuropathy for about thirty years. Just not sure I am doing the right thing. Anyone else have any idea how to get doctors and insurance to cover HSCT. Thanks again.
July 9, 2012 at 2:19 am
what is standard peri feral neuropathy? from what i have read of others posts who have had sct is that Northwestern will help with getting your insurance approval. Maybe someone who has had it done will post and give you more info. If not you could go through some of the older posts and get a lot of good info there.
July 9, 2012 at 2:21 am
oh never mind —LOL i figured it out “standard peripheral neuropathy” i just got out of a looong work weekend–took me a minute!!
July 11, 2012 at 3:44 am
caveman was your neuropathy from something else? you mentioned you had it for 30 years and was then diagnosed with cidp? with me my only symptom of the cidp is the peripheral neuropathy—–This disease is so confusing!!!
could it be you have had the cidp for 30 years and it was misdiagnosed, or did you have new developments and then diagnosed with cidp? When i was getting my last ivig dose there was a person getting it for neuropathy, not cidp he said—-just neuropathy?
July 11, 2012 at 4:15 am
Peripheral neuropathy is a broad category of disorders of the peripheral nerves. CIDP is a more specific type of peripheral neuropathy. So “peripheral neuropathy” would be an incomplete diagnosis, not a misdiagnosis, I think.
AnonymousJuly 29, 2012 at 4:47 pm
Finished my loading dose 2 weeks ago, they choose to do 50 grams in 4 days, still a total 200 grams. I felt nothing during infusions and I still have not felt any improvement as of now. I am unsure what started my neuropathy, but 30 years ago I was told it was trauma, then I was told it was genetic neuropathy something I was born with, both of these where diagnosis in my small town, then went to Ohio state 5 years ago and was told it was moving too quickly to be genetic and was given the peripheral diag. It wasn’t until 9 months ago when I went to Cleveland clinic that I was given the CID diag. I was hoping to feel something different by now, I need hand strength and balance!! Thank you everyone.
July 29, 2012 at 11:12 pm
Caveman – For some people, especially those that have symptoms for awhile, IVIG will take several loading dose before they can start to see a difference.
Don’t give up hope!
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