Starting my 4 day load up of ivig

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.

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!

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.

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!

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.

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.
Kelly

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.

oh never mind —LOL i figured it out “standard peripheral neuropathy” i just got out of a looong work weekend–took me a minute!!

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?

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.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001619/

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!

Kelly