Phil do you realy believe that

[delorisdoe]

Ivig treatments are not effective in aiding in the treatment of wegners. My personal experience was that I acheived a drug free remission within 2 months of receiving these treatments that lasted 8 years. I guess I like to think it was the ivig as the only other answer would be that 2.5 steady years of cytoxan. Mind you it is the fact that the cytoxan almost killed me that I was given ivig at all. I was lurking on the facebook page reading the conversation between you and Bruce. You seem so sure that ivig does nothing.

[Sangye]

Just poking in.... I don't think anyone can say IVIG does nothing at all for every person who takes it. Dr Seo did tell me studies showed it wasn't effective for Wegs as they had hoped. But remember, in all studies like that there are some people who do improve with it, just not enough to count as statistically significant. So maybe you were one of the few people it helps, Leigh. It does have anti-inflammatory properties, which is why they use it.

I understand why researchers are not interested in anecdotal evidence, but in your case I think it's hard to dispute that it helped.

[delorisdoe]

I dont deny that it is the long term cytoxan that put me in remission. I am quite sure that without it the ivig would have done nothing. I also understand why 1 persons possible positive outcome with it would be of no interest to anyone. I really do lean more towards believing that the cytoxan is the only explanation. Ivig did make me feel good though lol

[Sangye]

Anecdotal evidence can be used as a springboard into doing further study, but it can never replace the scientific gold standard--randomized, double-blind, controlled studies. In your case the ctx may have been an important factor. In a research study, they would place restrictions on participants to eliminate variables like that so that they could get true data on the drug in question.

[NicShaf]

I feel silly asking, but what is IVIG?

[Sangye]

It's an immunoglobulin infusion treatment that is used to treat several autoimmune diseases with great success. It's used with Weggies if certain immunoglobulins (antibodies) drop too low.

[NicShaf]

Ah, I see. Thanks for clarifying:)

[Daggar]

Intravenous immunoglobulin (http://en.wikipedia.org/wiki/Intravenous_immunoglobulin)



Not sure about IVIG but plasma exchange was critical, along with the other treatments, in saving as much kidney function as possible in Holly's case. It was only used during the initial ER stay.

[me2]

I did IVIG a few years ago and did not feel it did me any good. That is why I have had to continue on with every other treatment under the sun.

[Sangye]

Daggar, plasma exchange (plasmapheresis) is a very different treatment and is an established treatment for Wegs. Up until now they've used it pretty exclusively to treat severe kidney involvement, but there is a study underway looking at its usefulness in controlling severe lung involvement-- alveolar hemorrhage in particular.

I have had repeated alveolar hemorrhage--one of the most difficult manifestations of Wegs to treat. Ironically, ever since I heard of plasmapheresis I had a strong gut feeling it would help me. I've never had it and am not a candidate for the study. I've noticed that the members on here who've had it seem to go into lasting remissions. I asked Dr Seo about it once and he said that is often the case, but that kidney involvement without lung involvement is also "very easy" to get into remission. I hope the new study shows it's effective for those with lung hemorrhage, too.

[Geoff]

Daggar, plasma exchange (plasmapheresis) is a very different treatment and is an established treatment for Wegs. Up until now they've used it pretty exclusively to treat severe kidney involvement, but there is a study underway looking at its usefulness in controlling severe lung involvement-- alveolar hemorrhage in particular.
I hope the new study shows it's effective for those with lung hemorrhage, too.

I had this treatment when I was admitted into hospital 3 years ago, coughing up blood and with a scan of my lungs looking like a road map of Europe.

All I know is that it worked wonders for me, with the Doc saying he had never seen such a recovery and in such a short time.

[Daggar]

The nephrologist was saying that the iVIG had been successfully used in a few autoimmune disorders but he never mentioned Wegs.... Guillain-Barre Syndrome I believe?

[Jack]

I had plasma exchange, but I'm not sure that it did much good as I still ended up losing my kidneys. Perhaps it helped them to last longer than otherwise?
CTX worked for me eventually with little by way of side effects, but I did relapse several times when I tried to stop using it and switch to Azathioprine.

[Sangye]

Geoff, you're so fortunate. That's actually what I've heard from many others who have had plasmapheresis.

[Daggar]

I had plasma exchange, but I'm not sure that it did much good as I still ended up losing my kidneys. Perhaps it helped them to last longer than otherwise?
CTX worked for me eventually with little by way of side effects, but I did relapse several times when I tried to stop using it and switch to Azathioprine.

I'm not sure if I understood the docs completely but from what I gather the plasma exchange was just another step in stopping/lessening the damage as quickly as possible during the initial stage?

[delorisdoe]

To clarify, I was not given ivig as a treatment for wegners. I received it as a treatment for the cytoxan almost killing me. The wg just improved within months of the treatments. Rapidly improved after too long on cytoxan

[Daggar]

.........CTX worked for me eventually with little by way of side effects, but I did relapse several times when I tried to stop using it and switch to Azathioprine.

Jack -- how long after the switch did you experience the relapses? Holly's scheduled to do the switch in June. Was it a slow process or did you have a quick flare-up?

[Daggar]

To clarify, I was not given ivig as a treatment for wegners. I received it as a treatment for the cytoxan almost killing me. The wg just improved within months of the treatments. Rapidly improved after too long on cytoxan

that makes sense - the cytoxan probably kicked the crap out of your blood counts..... needed a recharge/reset....

[delorisdoe]

yes, and in my desire to have this wegners explained away simply, i attribute it to the ivig. silly i know.

[drz]

I'm not sure if I understood the docs completely but from what I gather the plasma exchange was just another step in stopping/lessening the damage as quickly as possible during the initial stage?

A year after my diagnosis I saw the nephrologist who confirmed my diagnosis with kidney biopsy. He said they expected I would lose my kidneys and end up on the transplant list. I also had very severe bleeding in the lungs that required many transfusions and intubation for several days. I was treated with many plasmaparesis sessions along with Rituxan IV and Cytoxan IV and lots of steroids and other things I don't recall. They were able to save some kidney function and it is now at 50% which saved me from dialysis. I had about 80 % kidney function before GPA/WGs from damage from diabetes. I am not sure what worked for me but suspect it was a combination of everything they did. My lungs ended up with about 70% function which they also said was a big surprise since they thought it would be much lower given the serious bleeding I experienced.

[pberggren1]

I am not saying that IVIg does not help one overall with Wegs. What I am saying is it is not a treatment to get Wegs into remission. But I don't doubt that the IVIg treatment you had, delorisdoe, did help you overall and help with the ctx and pred to get you into a remission that you can feel is good. I asked my doc about this and he said he has only had a couple of patients with Wegs that required this and did fairly well once they had the treatment but is not a treatment to treat Wegs, just to get the Ig back up to par. I asked him about plasmapherisis as well and he said in my case it would be of little or no benfit because my kidneys are good.

[delorisdoe]

My doctor never suggested that it was for anything besides repairing the wbc problem. Maybe It was the dangerously low wbc that put me into remission

[WeggieParent]

Jack -- how long after the switch did you experience the relapses? Holly's scheduled to do the switch in June. Was it a slow process or did you have a quick flare-up?

I'm not Jack but I can tell you that my daughter switched from CTX to Cellcept a year ago and had her first flare a few weeks ago. It was a slow process over the past year. She actually feels good and is very active but her bronchoscopy (routine check-up) showed traces of iron in the lavage fluid which they said meant her lungs were starting to weep blood somewhere. The drs consider it a 'mini-flare' and increased her prednisone and now she's tapering down again. They also said a flare doesn't mean that her maintenance drug Cellcept isn't working but this just happens. That is confusing to me but they are the WG experts!

[Daggar]

WeggieParent.... it's been a while - Hope all is well!

So she didn't have any issues initially during the transition? Did they have her do the lab work more frequently during the first month or two? I'm getting kind of nervous considering Holly has been on such high doses of pred and that'll end at the same time as the switch to Imuran.

Good to hear it was only a "mini-flare" that the pred took care of.

[WeggieParent]

I was also a worried parent and watched her every breath for awhile but she didn't have any problems during her transition. She was more thrilled to be off the CTX because it caused her hair to be thinner. After she transitioned to her maintenance meds they did labwork every 2-3 weeks for a few months and then changed labs to every 4-6 weeks. We had to watch for changes in symptoms like more coughing or pains anywhere but she was fine and nothing ever happened! The tapering of the pred does cause her to have knee and ankle pain for about a day after she drops. Ice packs usually help and then she's fine.

I wish Holly lots of luck!! With her humor and great attitude I'm sure she'll do well.