Accessing Ivig & other 'burning' questions!
 

Hi all,

I am hoping for any further info anyone has on both accessing Ivig in the UK and its impact on SFN and would really value anyones replies in response to my questions. As many others feel, I am feeling desperate.

Thanks En Bloc as always for your detailed repsonses. If anyone else has anything to add in response to my questions I'd love to hear.
My current situation is that I'm on 3600mg a day of gabapentin. I know this is a high dose but I had little choice. I can't tolerate any antidepressant type drugs but can actually tolerate gabapentin quite well apart from the awful fogginess and heavy sleeping. I top this up sporadically with tramadol.

I also have ankylosing spondylitis (AS) which is autoimmune - causing me loads of problems so after alot of hesitation, research and upset I really wanted to try anything. Therefore started taking etanercept, a biologic drug, 5weeks ago. It seems to be helping the AS a bit already. Not the SFN - but I knew this was highly unlikely. I know full well there are risks of only worsening the SFN with this, I have carried out extensive research for months and months to this effect. The SFN has been worsening at a rapid rate since this all came on just over a year ago anyway and I cannot sit back and do nothing. (hence being ramped up to 3600 gabapentin already).

The theory is lets try the Entanercept (also known as Enbrel) and see if it helps anything. I have felt that I needed to also control the AS to be honest as this can cause severe structural changes and I was feeling the effects of that physically pretty badly too. The hope is from the neuro and rheumy that whatever is behind the AS specifically is behind the SFN. Anyway, I now feel sick worrying about the SFN and the Enbrel but felt sick doing nothing.

My neuro is keeping me under review and we are repeating nerve conduction in September. He seems supportive of an application to what the NHS call the IVIG Panel to request approval for a trial if things keep worsening - which Im sure it will based on how quickly its progressed over the last year and how bad it is now. He said they will want evidence to verify improvement on IVIG in order to warrant continuation- Im not sure what on earth improvement may look like in my case. I worry that they may just give me a trial which is one 'dose' and then say based on their measures it isnt worth it so wont let me try longer.

Anyway, I wont ramble on so here are my questions if anyone can help?

- Does anyone know if you can have a biologic like Entanercept and also have Ivig alongside it? Would I have to stop Enbrel before being able to start Ivig and only take one or the other does anyone know? Neither my neuro or rheumy know the answer to this as they just dont come across people like me often apparently.

- How long is reasonable to try Ivig before saying it isnt having an effect?

- Is there anyone on here who lives in the UK accessing Ivig for small fibre neuropathy?

- Anyone anywhere in the world receiving Ivig for their small fibre neuropathy who has noticed improvements??

I have researched for a long time and have found a few reports but firm evidence or detailed reports on SFN responding to Ivig is hard to find. I know trials of effectivenness are limited, I understand due to the many causes behind SFN and therfore uncontrollable variables? Is that the reason I read somewhere? I dont know. Anyway, I want to present a raft load to my neuro in order for real consideration to be given to my case. Current NHS guidelines for administering Ivig do not include peripheral neuropathy apart from CIDP and MMN. I therefore will need as much to back me up as possible just to be
given a try. :)

Hi All,

I would also be keen to know if anybody is out there in Uk or anywhere really receiving ivig for idiopathic SFN?

I know some one who is taking IVIG for SFN (underlying issue is Lyme). He is getting infusion weekly for about two months now. So far his SFN is not improved. I am in the same boat. I have SFN due to Ulcerative Colitis (auto immune). My understanding is that insurance will not approve IVIG for SFN and UC.

IVIG is very expensive(because it has to be tailored to a specific person), thats the reason for limited use for certain autoimmune disease, and it doesnt work against all autoimmune. but it may help yours though. Nhs SEEMS more "liberal" about giving IVIG than in the states.

Let me clarify some incorrect information posted about IVIG.

First, IVIG is, in fact, very expensive, but it is NOT "tailored" to a specific patient...not in any way, shape, or form. Its expense is solely due to being a blood product (a very small portion of the blood) that requires up to 2000 donors per dose and it has a very detailed processing. Blood products are always in short supply and therefore, criteria to receive it is strict.

Second, based upon posters here using the NHS, it is much harder to get IVIG in the UK....especially for SFN.

IVIG has been found to be helpful in some immune mediated neuropathies, but it doesn't work in all cases/types.

Joanna,

A trial of 3-6 months would be more than enough to determine if IVIG will be effective or not.

I do not know whether someone can take a biologic along side IVIG...I have that question myself for my doctor on Tuesday, since it is believed (but we are still confirming) I have psoriatic arthritis and might benefit from a biologic. If I find out anything on using this combo together, I'll post it here after next Tuesday.

Hi there,

My neurologist has suggested Ivig on an n=1 trial basis. I am in the UK like Joanna, I am also confused as to if the Ivig did work, how do you prove this when going to panel to get ongoing treatment?

My skin biopsy showed increased nerve fibers, and professor suggested neuroinflammation, it gave a bit more information. so I am hoping if I take this option or steroids this may help.

The best way to "prove" improvement to get further treatment is by repeat skin biopsy. Since your biopsy showed increased fiber density, then it would seem logical that the follow-up biopsy showing density back into normal range would be necessary/best. I'm not well versed on increased fiber density, so I'm just using logic to guess at what would be appropriate. Maybe Glenn will see this thread and pipe in.

What is n=1?

Hi Enboc, that is a good question, I work for the health care system in UK, I work closely with a GP , I took the letter in to show him, he was saying it was a trial and as I am the only one , as it is rare, it is on an n=1 basis, he doesn't know much about it though. I see my neuro on 12th August, I will have a whole host of questions for him, that is one of them!

Thankyou enbloc, that's really helpful. If your consultant gives you an idea on the biologic combo question I'd love to know what he says. Thanks again.

Thanks neuro problem. They aren't seeming too liberal at the mo but will keep pursuing.