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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   I'm starting IVIG! (https://www.neurotalk.org/peripheral-neuropathy/232935-im-starting-ivig.html)

LouLou1978 02-25-2016 07:15 AM
Well done Joanna you have been through hell. You deserve a break. You've got loads of good advice on this site about the infusion so I'm sure you will be fine. Let us know how it all goes. Over the moon for you.

ElaineD 02-25-2016 08:33 AM
I certainly hope it helps. I've been on monthly IVIG for 2.5 years, longer actually.

I have IVIG for an Immune Deficiency, not my neuropathy.

After two years of IVIG, I became AWARE of my small fiber neuropathy, so clearly the monthly IVIG did not stop my small fiber neuropathy from developing.

However, I'm know ONE thing for sure....we are all different from normal people and we are all different from each other.

So I'm sending you WISHES and HOPES that your IVIG treatment with heavy front end loading will give you some relief.

I get some relief from the worst of my SFN with 3600 mg of gabapentin (Neurontin) but it does slow me down considerably.

Hugs, ElaineD

Healthgirl 02-25-2016 09:35 AM
Good luck! Keep us posted. :)

en bloc 02-25-2016 01:50 PM
Quote:
Originally Posted by ElaineD (Post 1201248)
I certainly hope it helps. I've been on monthly IVIG for 2.5 years, longer actually.

I have IVIG for an Immune Deficiency, not my neuropathy.

After two years of IVIG, I became AWARE of my small fiber neuropathy, so clearly the monthly IVIG did not stop my small fiber neuropathy from developing.

However, I'm know ONE thing for sure....we are all different from normal people and we are all different from each other.

So I'm sending you WISHES and HOPES that your IVIG treatment with heavy front end loading will give you some relief.

I get some relief from the worst of my SFN with 3600 mg of gabapentin (Neurontin) but it does slow me down considerably.

Hugs, ElaineD

The dose of IVIG for immune deficiency vs that for neuropathy are VERY different. IVIG for neuropathy is triple the dose then used for immune deficiency, so it's not surprising that your neuropathy wasn't affected by the IVIG.

baba222 02-25-2016 02:09 PM
Quote:
Originally Posted by JoannaP79 (Post 1201116)
Hi all,

Thanks to LouLou's recommendation, I finally found a good neurologist in the U.K who has pushed my insurance company to cover an ivig trial. I'm just arranging the date for a 5 day admission to hospital for intensive ivig every day.
Hope so much it helps with my SFN. It is now in every part of my body including my teeth! Kind of just accepting it but hope this may help me. The problem is that I don't expect to get to the end of 5 days and say yes it worked. What do I say to the neurologist if I feel the same at the end of 5 days. I don't want to stitch myself up and instead want to keep at it for as long as possible to give it a chance.
Great!
Hope you get some relief soon.
:hug:

JoannaP79 02-28-2016 06:04 PM
Quote:
Originally Posted by baba222 (Post 1201310)
Great!
Hope you get some relief soon.
:hug:
Thanks for all of the replies. I will be positive but will remain realistic.
The thread you posted David covered all the questions I had so many thanks for that.
En bloc, it is encouraging to know that even after so long something was felt.
I have recently spoke with someone on another forum who had such an extreme reaction tonthe ivig that her life was at risk. I feel very nervous but very willing to get on and give it a try.

JoannaP79 02-28-2016 06:08 PM
Quote:
Originally Posted by en bloc (Post 1201303)
The dose of IVIG for immune deficiency vs that for neuropathy are VERY different. IVIG for neuropathy is triple the dose then used for immune deficiency, so it's not surprising that your neuropathy wasn't affected by the IVIG.
That's really interesting to know. I have had insurance cover through my employer so am so very lucky to be able to try this, especially living in the U.K where the NHS can't provide adequately for chronic conditions. The secretary arranging this said that for the 5 day loading infusion the hospital wanted a deposit of £15k. That is just for the deposit! I nearly fell off my chair. I cannot comprehend that much money and dread to think what the full amount is. It makes me realise why the NHS are so loathed to try it in experimental cases such as SFN.

Starburst 03-02-2016 03:01 PM
Quote:
Originally Posted by JoannaP79 (Post 1201790)
That's really interesting to know. I have had insurance cover through my employer so am so very lucky to be able to try this, especially living in the U.K where the NHS can't provide adequately for chronic conditions. The secretary arranging this said that for the 5 day loading infusion the hospital wanted a deposit of £15k. That is just for the deposit! I nearly fell off my chair. I cannot comprehend that much money and dread to think what the full amount is. It makes me realise why the NHS are so loathed to try it in experimental cases such as SFN.
Just 'cause I'm nosy, do you mind saying which consultant you're seeing please? I understand if you don't want to say.

JoannaP79 03-09-2016 06:14 PM
Quote:
Originally Posted by Starburst (Post 1202260)
Just 'cause I'm nosy, do you mind saying which consultant you're seeing please? I understand if you don't want to say.
Hi there, replied in a private message.

baba222 03-10-2016 09:02 PM
Good luck with it.
Hope you get some relief!:hug:


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