I.V. Immunoglobulin and Plasma Exchange

[watersedge]

Just wondering if these two treatments are the same thing or are they even similar. I have read several threads where some of you were critically ill and were given plasma exchange and it saved your lives. I have always wondered why they never gave it to my dad until I remembered they gave him i.v. immunoglobulin at one stage and began thinking if maybe it had the same type of affect. I would like to think that he had been given every possible treatment going and that he didn't miss out on something that maybe could have made a difference.
Would appreciate any of your knowledge, thanks.

[delorisdoe]

Plasma exchange involves your own blood being removed-more to it than that. Iv immunoglobulin is like a blood transfusion.

[Al]

Just wondering if these two treatments are the same thing or are they even similar. I have read several threads where some of you were critically ill and were given plasma exchange and it saved your lives. I have always wondered why they never gave it to my dad until I remembered they gave him i.v. immunoglobulin at one stage and began thinking if maybe it had the same type of affect. I would like to think that he had been given every possible treatment going and that he didn't miss out on something that maybe could have made a difference.
Would appreciate any of your knowledge, thanks.

Actually, these two treatments are exactly the opposite. Plasma exchange attempts to remove offending antibodies; IV immunogloblin supplements antibodies that are in short supply. It is used with certain acute infections and some autoimmune diseases, like Kawasaki disease. I have never heard of its use with WG and similar diseases, as they are associated with too many antibodies (ANCA).

Al

[delorisdoe]

Actually, these two treatments are exactly the opposite. Plasma exchange attempts to remove offending antibodies; IV immunogloblin supplements antibodies that are in short supply. It is used with certain acute infections and some autoimmune diseases, like Kawasaki disease. I have never heard of its use with WG and similar diseases, as they are associated with too many antibodies (ANCA).

Al

I had 6 ivig treatments. They were due to my wbc being dangerously low.

[Al]

I had 6 ivig treatments. They were due to my wbc being dangerously low.

I just thought of an esoteric way IVIG could be useful for mitigating some kinds of inflammation. It has to do with binding Fc receptors. I'll look into this....

Al

[delorisdoe]

I looked and felt like poo. I had Ivig because I was very weak. Within 3 months of these treatments I was off all weg meds except bactrim. Just a coincidence I have been told

[Al]

Upon further research, it appears that iVIG can be used to modulate the immune system, to some advantage with a whole range of autoimmune diseases, including WG. The actual mechanism of action is not understood, but could have something to do with my idea of binding the Fc receptors, preventing the ANCA from doing the damage. I can also conceive of IVIG being considered as an adjunct to plasma exchange. Once the endogenous anitbodies, both beneficial and otherwise, are cleared, the can be replaced with just beneficial exogenous antibodies, possibly reducing rates of infection.

Interesting subject, though, like everything else in our world, complicated. I'll let you know if I learn more!

Al

[watersedge]

Thanks guys, it is quite confusing, I've tried several times to look it up myself but just get confused. He only had one cyclophosphamide dose and caught pneumonia and ended up in intensive care, he was too weak for the second dose of cyclo after that so that is why they said they were giving him immunoglobulin instead if that sheds any light on it.

[kulharv]

Hi Watersedge,

I just had 5 IVIG treatments as my lungs were full of blood and was told that it would control and stop the bleeding and it did the job. After those treatments I was given 4 of RTX.
I also had cyclo treatments, 7 in total, and after the 7th one my lungs had started to hemorrage.
It is really confusing and I don't think it gets easier.

Harvi

[delorisdoe]

Thanks guys, it is quite confusing, I've tried several times to look it up myself but just get confused. He only had one cyclophosphamide dose and caught pneumonia and ended up in intensive care, he was too weak for the second dose of cyclo after that so that is why they said they were giving him immunoglobulin instead if that sheds any light on it.

If I am to compare it to my experience than that seems right to me. I was given ivig for the same reason-too sick/weak etc. I was only 28 so I think maybe that is why I benefited unlike your father.

[Al]

Thanks guys, it is quite confusing, I've tried several times to look it up myself but just get confused. He only had one cyclophosphamide dose and caught pneumonia and ended up in intensive care, he was too weak for the second dose of cyclo after that so that is why they said they were giving him immunoglobulin instead if that sheds any light on it.

It does shed light. It sounds like they decided the certainty of infection trumped the possible benefits of the CTX. IVIG is pretty common for serious infections when the immune system is at a low ebb. Your father must have been pretty weak. Pneumonia without a functioning immune system is horrible.

Al

Al

[delorisdoe]

It does shed light. It sounds like they decided the certainty of infection trumped the possible benefits of the CTX. IVIG is pretty common for serious infections when the immune system is at a low ebb. Your father must have been pretty weak. Pneumonia without a functioning immune system is horrible.

Al

Al

I have my own new theory. I have been told that Ivig is a useless treatment for wegeners so I decided that I went into an 8 year remission due to how low my wbc was due to the 2 years of ctx. My theory is the ctx almost killed me and in doing so wiped me out not only of my immune system but also of my wg problems. The ivig was just need to get me healthy again.

[Al]

I have my own new theory. I have been told that Ivig is a useless treatment for wegeners so I decided that I went into an 8 year remission due to how low my wbc was due to the 2 years of ctx. My theory is the ctx almost killed me and in doing so wiped me out not only of my immune system but also of my wg problems. The ivig was just need to get me healthy again.

Leigh, your theory is, in fact, the entire principle behind CTX! you are surely right about the IVIG too. I'm glad it worked long-term for you. For me, it had to be repeated. Drac says that he won't to CTX again--the risks outweigh the benefit. If I need it, I'm guessing that RTX is up next.

Al

[delorisdoe]

I am going to assume I too will never be on ctx again...2+ years was aprox 1.5 years too many.

[drz]

Leigh, your theory is, in fact, the entire principle behind CTX! you are surely right about the IVIG too. I'm glad it worked long-term for you. For me, it had to be repeated. Drac says that he won't to CTX again--the risks outweigh the benefit. If I need it, I'm guessing that RTX is up next.

Al

I think several of us are in the same boat. RTX is our back up plan if we have a serious flare. We have done the CTX thing and it wiped out our WBC several times while trying to control the WEGS.

[delorisdoe]

I have never had a next step or back up plan conversation with my docs. They mention treatment and I get a look of horror on my face and they stop taling about it.

[Al]

I have never had a next step or back up plan conversation with my docs. They mention treatment and I get a look of horror on my face and they stop taling about it.

Well, I guess this is a treatment plan of sorts--the anti-plan plan. But, then, when you are under the protection of the gods....

Al

[pberggren1]

I have never had a next step or back up plan conversation with my docs. They mention treatment and I get a look of horror on my face and they stop taling about it.

Shame on you. Does Batman have to pay you a visit?

But seriously, you should be talking with your doc to use rtx next time. Hopefully there is not a next time but one still has to plan ahead. I am still working with my doc to make sure I have financial coverage from the government for rtx so that next time we can use it right away instead of waiting 3 months and having to use ctx and then having the ctx wreck my bladder and do other nasty things.

Trust me. Back up plan is a MUST.

[Al]

Trust me. Back up plan is a MUST.

You see, Leigh? Batman is not mean--he loves you and wants the best for you. Listen to his nag and take your medication, and heed, dammit! we need you around for years to come...

Al

[delorisdoe]

I deal with stuff as it happens

[Sangye]

Actually, these two treatments are exactly the opposite. Plasma exchange attempts to remove offending antibodies; IV immunogloblin supplements antibodies that are in short supply. It is used with certain acute infections and some autoimmune diseases, like Kawasaki disease. I have never heard of its use with WG and similar diseases, as they are associated with too many antibodies (ANCA).

Al
I asked Dr Seo why some people have gotten IVIG at times. He said it has nothing to do with treating the Wegs, and is only given if they become too immune-compromised.

[delorisdoe]

I was only given them when I became too immune compromised. My doctor gave it to me for exactly why dr seo said. It took a lot of convincing from all of you though to convince me that it was not the reason for my abrupt remission. :)

p.s. sangye...i just ordered the book off of amazon used for 3 bucks. Pretty good considering I almost ordered it from my local book store for 17 bucks plus tax.

[watersedge]

Leigh mentioned something about plasma exchange involving removing your own blood. Would dialysis do the same thing? Sorry, I am a bit of a dope when it comes to all this medical stuff. Thanks for all your replies.

[Sangye]

No, dialysis just replicates what the kidneys should be doing-- removing waste products from the blood.

Plasma exchange doesn't really replicate a bodily process.

[Al]

No, dialysis just replicates what the kidneys should be doing-- removing waste products from the blood.

Plasma exchange doesn't really replicate a bodily process.

Plasma exchange is sort of like the old dairy process of separating the curds from the whey. It takes out some of the blood, separates out and tosses the plasma (the fluid part that hast the free-floating antibodies), adds the chunky parts of the blood (all the red stuff) to fresh plasma, and puts it back in. Six or seven times through this process usually takes care of a large percentage of the antibodies.

Al

[watersedge]

Thanks everyone. I have another question I wanted to ask. I've read on another thread somewhere that it takes about a month for cyclophosphamide to kick in when you take it first but if you are very ill and have kidney involvement, what is dealing with the anca's continually attacking the blood vessels in the meantime especially if you are deteriorating rapidly and waiting for the cyclo to work to full effect? I know the steroids reduce inflammation, does it also deal with the offending antibodies?

[pberggren1]

The cyclo kicks in right away the first day with oral or IV, but the full effect usually takes about a week to 3 weeks depending on dose, severity of disease, and amount of pred.

[drz]

Some studies on plasma exchange indicate it is very helpful:

Combination therapy with cyclophosphamide and prednisolone is widely used for renal vasculitis and leads to remission in over 90% of patients. Those presenting with advanced renal failure, however, have poorer outcomes with only 50% surviving with independent renal function at 1 year..

In a retrospective review of patients with ANCA-associated vasculitis and pulmonary hemorrhage, however, 20 patients received methylprednisolone, plasma exchange and cyclophosphamide. All patients had resolution of their pulmonary hemorrhage and 50% showed improvement in renal function. There were no complications of therapy.

ANCA-associated vasculitis, which includes Wegener’s granulomatosis and microscopic polyangiitis, accounts for 80% of patients with rapidly progressive glomerulonephritis.

[watersedge]

Drz, this is what I am trying to get to the bottom of in my head by eliminating every other possible question I can think of but it keeps coming back to the same question, especially with the kidney involvement, WHY DIDN'T THEY GIVE HIM PLASMA EXCHANGE??? I had never heard of it until I came on this forum and read how it helped so many people, how I wish I had found this site in time, maybe I would have know the right questions to ask the doctors, sorry, I think I am slowly going mad.

[watersedge]

Thank you also Phil.

[Al]

Some studies on plasma exchange indicate it is very helpful:

Combination therapy with cyclophosphamide and prednisolone is widely used for renal vasculitis and leads to remission in over 90% of patients. Those presenting with advanced renal failure, however, have poorer outcomes with only 50% surviving with independent renal function at 1 year..

In a retrospective review of patients with ANCA-associated vasculitis and pulmonary hemorrhage, however, 20 patients received methylprednisolone, plasma exchange and cyclophosphamide. All patients had resolution of their pulmonary hemorrhage and 50% showed improvement in renal function. There were no complications of therapy.

ANCA-associated vasculitis, which includes Wegener’s granulomatosis and microscopic polyangiitis, accounts for 80% of patients with rapidly progressive glomerulonephritis.

Excellent summary. As I have said before, on a personal basis, I believe I owe my life to plasma exchange.

Al