[poucho]

Hi all,

Apologies for the super blank profile. I've been browsing for about a year, only just registered and of course, the pain is so crippling, I just don't have it in me to fill out a full profile at the moment.

Curious to hear from those who've had IVIG for CRPS/RSD. I am in the UK, pretty sure I just missed Dr Goebel's clinical trial for it here, but have read threads in the past here of people having received this treatment in the US.

I see the Ainsworth Institute in NYC offer IVIC infusions.

Any of you who've had any success with it care to share experiences/where they had it done?

For the intro I never made:
Female, 29, United Kingdom.
Former ballet dancer, CRPS in both feet and legs
Definitely out of stage I,probably not stage III, so just hovering somewhere in cold phase with recurrent flare-ups, barely able to walk, allodynia, and the usual crushing, aching nightmare that never freaking ends.

Thanks.

[CRPSbe]

Originally Posted by poucho

Hi all,

Apologies for the super blank profile. I've been browsing for about a year, only just registered and of course, the pain is so crippling, I just don't have it in me to fill out a full profile at the moment.

Curious to hear from those who've had IVIG for CRPS/RSD. I am in the UK, pretty sure I just missed Dr Goebel's clinical trial for it here, but have read threads in the past here of people having received this treatment in the US.

I see the Ainsworth Institute in NYC offer IVIC infusions.

Any of you who've had any success with it care to share experiences/where they had it done?

For the intro I never made:
Female, 29, United Kingdom.
Former ballet dancer, CRPS in both feet and legs
Definitely out of stage I,probably not stage III, so just hovering somewhere in cold phase with recurrent flare-ups, barely able to walk, allodynia, and the usual crushing, aching nightmare that never freaking ends.

Thanks.

What is IVIC? What does it stand for?

[poucho]

Originally Posted by CRPSbe

What is IVIC? What does it stand for?

Intravenous immunoglobulin.

I am not yet able to post links due to just joining, but if you google IVIG CRPS, you'll see the studies done by Dr Andreas Goebel showing promising results. I did quite a few searches here and saw some members had received IVIG treatment.

[CRPSbe]

Originally Posted by poucho

Intravenous immunoglobulin.

I am not yet able to post links due to just joining, but if you google IVIG CRPS, you'll see the studies done by Dr Andreas Goebel showing promising results. I did quite a few searches here and saw some members had received IVIG treatment.

Oh ok, thanks for explaining. Off to read more about it!

[CRPSbe]

Seems like the studies done on it are a little... I don't know. Not many patients tested, and not that many great results, IMMHO.

I'm not sure about this...

OTOH, it's "just" an IV and far less invasive than other procedures, which isn't a bad thing.

[Littlepaw]

Hello and Welcome Poucho,

I just wanted to reach out since you are new.

I have not had IVIG so can't speak to this personally but I do find the research intriguing. For those of us with a lot of allergy, immune-y type things it is certainly a thought. If it were a bit easier to access here in the states I would have considered it for myself.

I hope you find what you need and wish you relief and healing.

[abigailsophiex]

Hi I am in the UK too and I just missed out on Dr Goebel's IVIG trial (I had to go all the way up to Liverpool from Kent to get my diagnosis because I am so young).

Watch out because the results of the trial are coming out in the next month or so if not already, I think he said it would be a 1 in 4 success rate or something like that. If its positive they may introduce it as a treatment in more locations across the country.

Have you spoken to your local pain consultant? (if you have one that is), mine discussed with me the possibility to administering it at our own hospital as Dr Goebel gave him the go ahead to do that. I have just had a stellate ganglion block for the crps in my arm so we are going to wait to see if that works first xx

[CRPSbe]

Originally Posted by abigailsophiex

Have you spoken to your local pain consultant? (if you have one that is), mine discussed with me the possibility to administering it at our own hospital as Dr Goebel gave him the go ahead to do that. I have just had a stellate ganglion block for the crps in my arm so we are going to wait to see if that works first xx

I'm sorry you missed out on the trial!

Hope the block works for you.

I never had blocks, just out of principle. I saw a lot of people around me get worse due to blocks (not that I'm trying to discourage you). But it was far too invasive for me, and I couldn't afford to get any worse. I had traveled through all the stages (only diagnosed almost 3 years into it), so - not an option.

[abigailsophiex]

Originally Posted by CRPSbe

I'm sorry you missed out on the trial!

Hope the block works for you.

I never had blocks, just out of principle. I saw a lot of people around me get worse due to blocks (not that I'm trying to discourage you). But it was far too invasive for me, and I couldn't afford to get any worse. I had traveled through all the stages (only diagnosed almost 3 years into it), so - not an option.

Thank you!

Yeah I was diagnosed late (not as late as you though) at 7 months from onset and then again at 1 year and 2 months. Ive waited 18 months to start treatment though which isn't fun when you're only 20 and paralysed as a result

I have heard that about the blocks too, they say its a safe procedure but there are so many risks associated with it! xx

[CRPSbe]

Originally Posted by abigailsophiex

Thank you!

Yeah I was diagnosed late (not as late as you though) at 7 months from onset and then again at 1 year and 2 months. Ive waited 18 months to start treatment though which isn't fun when you're only 20 and paralysed as a result

I have heard that about the blocks too, they say its a safe procedure but there are so many risks associated with it! xx

They always say it's safe because for them it's just a routine procedure; but you have to live with the consequences. I got the standard Belgian treatment which is calcitonin & bisphosphonates (for late stage). Well, it was all too late anyway.