I'm starting IVIG!
 

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.

The 5 day infusion is typically the "loading dose" and they should continue monthly after that for at least 12 weeks.

Thanks en bloc. I know you have explained your situation to me already but could you remind me whether you noticed anything at all with the ivig within the initial dose?

This thread may be useful: http://neurotalk.psychcentral.com/thread229739.html. All thanks to En Bloc.

I did notice some mild improvement after the five days, but it was NOT a huge reduction in symptoms. It takes time for this to work. It basically has to modulate the immune system and it's responses. That loading dose is just the first step. They do like to see some improvement after the loading dose (even just a little), but it doesn't always happen from the people I have talked to. For some, it can be 3-6 months before they notice improvement. But some of these didn't get the 5 day loading dose (some get 3 days and some just start monthly infusions). You'll just have to wait and see. But be optimistic!!

Be sure to hydrate well before the infusion begins...and during those 5 days. Also, make sure to tell the nurse/doctor about ANY side-effects. Most side-effects are rate related and the nurse will slow down the rate if you have any headache, etc. Don't wait until side-effects get bad to bring it up. They need to know right away if you have headache, chills, etc. They will be checking your vitals throughout the infusion as well. This is protocol, so don't be alarmed by them taking pulse, BP every 15-30 minutes at first...and every time they increase the rate a little.

Joanna,

So happy you are able to move forward with some treatment. :) I hope all goes well and you get the results you need.

Sending healing thoughts, :hug:

Glad to hear you got the approval, good luck!!

My neuro told me it can take up to 6 months to know if it is working.

Joanna,

The other thing to remember is that a skin biopsy can be repeated in 6 months (normal time period to really tell if helpful) to see there is an increase in nerve fiber density...this is "proof" it is working. So, even at 6 months, your symptoms may only be somewhat better and density slightly increased...but it is signs that the IVIG is working and you are headed in the right direction. IVIG takes TIME.

Post IVIG flare
 

FYI, my ds7 recently had IVIG for a different neuro condition and while we think it has helped, he also had some symptoms become more aggravated. His neuro then gave him a 3 day, solumedrol pulse to calm that down--which helped. Good luck with you IVIG!

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.

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

Good luck! Keep us posted. :)

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.

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.

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.

Hi there, replied in a private message.

Good luck with it.
Hope you get some relief!:hug: