Does anyone else have IVIG monthly infusions?

[Steamboat]

I have been having IVIG infusions for about 2 yrs now and don't know I notice a difference. I wasn't sure if you do feel different or if you just get less serious infections.

Felicity

[behcetshurtsbeyondwords]

Hello Felicity,

I am quite interested in learning more about igG i.v. therapy for Behcet's because I have been told that I have a chronic IgG deficiency. None of the treatments have been helping to settle down my symptoms (most bothersome is the swelling and severe pain, along with sheer exhaustion that just lingers on an on). I've been on Methotrexate, Colchicine, and now on Azathioprine along with 700mcg Remicade every 6 wks (my rheumatologist is going to continue increasing it until the max dosage). I've been told that my behcet's is "refractory" because it just is not responding at all to conventional treatments. I have questioned him on the low igG, wondering if maybe this could be related to the fact that things won't settle down. I don't get infections, in fact, I rarely even catch a cold. He told me that the only reason I would get igG therapy is if I began getting chronic or serious infections and that it wouldn't help the behcet's. But I can't help but still wonder about it because its low in me for some reason.

I am just curious as to why your doctor started you on the igG treatment? Was it because you had low levels too? or suffered from chronic infections? I haven't had much luck finding too much info on the internet-- its hard enough finding good info on Behcet's disease itself. Any info I can gather would be helpful.

Thanks,

Jenna

[Steamboat]

Hi Jenna,

I started having the monthly infusions because my levels were low but even since taking it I have had septicemia requiring ICU addmission and respiratory and blood pressure support. My last trough level was low so the docs have put my dosage up. In Australia it is recommend by the immunology team. I haven't been started on it as a treatment for bd. it is very expensive and paid for by the blood bank(it is something like $2000a bottle and I have 4 bottles a month.

I have been on all the medications you have been on without sucess. My most sucessful combination was cyclophosphamide, embril, prednisolone and colchicine but I had serious trouble with my blood counts. I am now on prednisolone,colchicine, tarolimius and micophenolate as my immunosuppressives, not sure how it is working but I need to give it longer.

It doesn't sound as though IVIG would really help you until you get infections (could be preventative though) as it doesn't treat bd and it would save you and extra trip to hospital.

Do you have a portacath to save the needle stick each time? I did have a pic line for a while but it kept getting infected.

I hope this answered your question, get back if it didn't

Best wishes, felicity

[lesleyg]

Hi Felicity

Just read up on Wikipedia re IVIG. I know we can't believe everything we read on the internet however I always find Wikipedia gives a good overall summary and then one can go on to more research. (Friend of mine always says she'll look up things on 'Uncle Google' - I like 'Aunty Wikipedia').

I'm fairly sure IVIG was what suggested as a possibity for me and then quickly disgarded for the time being (cost definitely came into it).

To everyone else - Felicity and I share at least one doctor and have been comparing notes on treatment etc re message route.

This has been 'Cut and Paste' from Wikipedia:

IVIG is mainly used as treatment in three major categories:

1. Immune deficiencies such as X-linked agammaglobulinemia (XLA), hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions (secondary immune deficiencies) featuring low antibody levels.

2. Autoimmune diseases, e.g. immune thrombocytopenia (ITP), and inflammatory diseases, e.g. Kawasaki disease.

3. Acute infections.

From memory what was said to me is that my neutrophils were out of control and by having the IVIG it would get the antibodies under control for a short time - which would line up with number 2.

The doctor said it wouldn't cure me just give me a bit of relief for a while and then it would have to be administered again. As mentioned she decided herself to go down a different path of treatment for the time being.

I've mentioned to a few people on the forum privately that I'm a Jehovah's Witness. My doctors have been great and haven't pressured me at all, but then again it hasn't really come down to a 'crisis' or emergency on my part. (Happy to talk to anyone privately via messages as I know it is a very sensitive issue and I am talking purely about my own choices).

Sorry Felicity - hope I haven't hijacked your question. Immunology is starting to get into really deep stuff. We'll all earn our own medical degrees.

Cheers

Lesley

[Steamboat]

Thanks Lesley,

It is very expensive but as blood bank approval is required there is no cost to the user.

I don't notice a difference but maybe things would be a lot worse without. I know that they usually give me a dose is ICU so that also brings in point number three.

I was wondering if it is used in the UK

Haven't hijacked question, my medical knowledge is improving, during my training only saw kids with juvenile rheumatoid arthritis.

Felicity

[lesleyg]

Hi Felicity

I was thinking the same - things could be a lot worse without all this treatment.

I know I don't feel much better (in fact slightly worse) than when I was diagnosed 2.5 years ago (seem like a lifetime).

Lesley

[Steamboat]

Hi Lesley,

It is awful that you feel worse than pre treatment. I hope they have the correct diagnosis.

Maybe they have the wrong drug combo for you, I am not too bad for 3wks out of the month and things fall apart, sometimes in a big way.

The dr you have in immunology is very clever (so I am told) so give him some time to get it right, hopefully.

I haven't been much help, sorry

Felicity

[lesleyg]

Hi Felicity

Just by example you are a great help.

I'm thinking seriously about having some IV methylprednisone in the next few days (will only be my second dose in three months so not too bad.

Yes I know he is very clever - I will have to just 'hang in there'

Cheers

Lesley

[duke22]

my son has been getting ivig for a year and a half. his behcets is way out of control all the time. never has had a break. he was able to get ivig (certain critera have to me met for insurance to pay and something about his titers to the pneumona vacine says he can get it ???). anyway he is 23 and says he thinks that the ivig has made his mouth ulcers less but that they become infecteded which is so much more painful. it looks infected has puss and everything (that he has to scrape off so more puss can come out) but it has been cultured many times and comes up with nothing bacterial. he does not even have hsv 1 which seems impossible. anyway he wants to skip the treatment this month and see if his ulcers still get infected as he seems to think that they didnt get infected before. I am his mom and want to drag him to ivig but i wont. I worry all the time and pray for all yall being so strong.