Next Drug?

[Sangye]

Remicade is NOT Rituxan/Rituximab/Rtx.

Remicade/Infliximab is a biological agent and monoclonal antibody like Rituximab, but works quite differently. It's being studied as a treatment for Wegs, but to my knowledge none of the Vasculitis centers are using it outside of studies. It does look promising--especially for "refractory" (ie, non-responsive to other drugs) systemic Wegs-- and may be the next Rituximab.

Remicade is an antibody to Tumor Necrosis Factor (TNF) which is made by the body. The role of TNF is to destroy malignant cells before they multiply and become larger tumors. So the obvious risk of Remicade is that you've taken away the body's Tumor Cop.

I searched PubMed and couldn't find any studies later than 2008 (other than 1 or 2 case studies). That probably indicates long-term studies are in progress right now. Maybe those of us who see Wegs specialists can ask our docs about Remicade at our next visits.

This 2008 paper is by Carol Langford at Cleveland Clinic
Drug insight: anti-tumor necrosis factor therapies... [Nat Clin Pract Rheumatol. 2008] - PubMed result
"Experience with the use of anti-TNF agents in patients with Wegener's granulomatosis or giant-cell arteritis has emphasized the crucial role of randomized trials in determining whether a treatment is effective, even in the face of promising preliminary data. Caution is necessary in clinical practice until such data become available."

A 2008 paper.
Novel therapies for anti-neutrophil cytoplasmic an... [Drugs. 2008] - PubMed result
"Safety concerns, notably of infection and malignancy, were common and need to be explored in subsequent trials. In addition, concomitant immunosuppressants and non-standardized definitions were major limitations, and future studies of these and newer agents must follow agreed standards of study design and reporting to facilitate clearer interpretation of the circumstances (e.g. disease stage, severity or organ involvement) under which these agents perform optimally. Consequently, use is still limited to centres experienced in such agents and mostly in the context of clinical trials."

This 2008 study includes 1 Weggie but the abstract doesn't say how s/he did:
Anti-tumor necrosis factor therapy: 6 year experie... [Isr Med Assoc J. 2008] - PubMed result
"Infliximab and etanercept have been included in the Israeli national list of health services since 2002 for rheumatoid arthritis and juvenile idiopathic arthritis, and since 2005 for psoriatic arthritis and ankylosing spondylitis. The regulator (Ministry of Health and health funds) mandates using fixed doses of infliximab as the first drug of choice and prohibits increased dosage. For other indications (e.g., vasculitis), anti-tumor necrosis factor therapy is given on a "compassionate" basis in severe refractory disease."

Cindy, I have no idea why your docs would be discussing Remicade when they haven't tried Ctx or Rtx--both proven therapies. I'd push for answers on that one if it were me.

[elephant]

Thanks Sangye, one of my doctor friends told me she has a patient that takes Remicade and is doing well. That is the only person I ever heard of taking that drug for WG. I am so happy to see the Carol Langford did that study. Makes me smile! How are you feeling Sangye?

[Sangye]

That's great to hear. I wonder if that patient is unable to take anything else. I hope it works for them.

[Cindy M]

Hi Renidrag, I am currently taking cyclophosphamide (150 mg) per day along with 60 mg of preds. and have tried methotrexate at the beginning.

[LilyPony]

Wegs with more "vasculitis" ... Wegs with more "granulomas"

Sangye - I am curious about this and haven't read anything about it yet. My tests came back showing windpipe was irritated, sinuses were irritated, larynx oddly normal and perfect. But nothing that "looked" like wegs to the ENT. Perhaps he was looking for granulomas or just a war field, I don't know. There wasn't even anything he felt was even remotely worth a biopsy. Does that appearance sound characteristic of more of a vasculitis type of case? I'm still in the process of trying to be seen by the right people. I"m on board with some prednisone for the next two weeks to control the "allergies" or whatever it may be.

[JanW]

Lilypony: you indicated on another thread that your doc said that the area would look "diseased and gray" vs. "pink or red" if you were having WG related problems. I have never heard this. The area of scarring around my windpipe is so old it's not even pink anymore, but pink or red was precisely what he was/is looking for in terms of active inflammation. He also found granulomas in the first two rings of my trachea (now sent for biopsy) so I had both inflammation and granulomas there.

And of course, since he says it didn't look like WG to him, it really begs the question -- how much has he seen, or did he confer with pictures on the web like we all do. If he hasn't treated many WGs patients, I would assume later. And anyone who will tell you that WG will be limited over your lifetime to one or two places in your body is being overconfident. It MAY be, but like my ENT says, you have to be humble in the face of this disease - -more is unknown than known.

[elephant]

Jan you are absolutely right! WG attacked my kidneys and joints first and slowley worked it's way to my lungs and sinuses. I will state this again, WG too me has no limits....

[LilyPony]

Thank you Jan. I do not know how much experience he has but he sounded quite confident that it looked nothing like wegs, so perhaps he's seen a few cases that were horribly visible. He's considered by many to be the best ENT in my area. We're not far from the medical schools of UNC at Chapel Hill and Duke University, so there's a wealth of doctors here. And he's been highly touted as the best. But if he doesn't have experience, then he can only be useful to a certain extent. Perhaps the blueish gray coloration is sign of other kinds of disease?

I'm taking this whole a thread totally off topic here! Now I am about 8 hours past taking my first 40 mg dose of prednisone and slowly starting to get stuffed up again. I've also got a backache and knee pain. I'm wondering if always aching but I'm too busy to notice. Back, knees, and ankles usually hurt quite badly when it's stormy but I've always attributed that to mild arthritis from the various injuries I've gotten from "trying to be an athlete" as my husband puts it. I've never noticed it in nice weather though and it's beautiful out today. Is it possible that my pain was temporarily relieved by the prednisone and now I'm just noticing it coming back, or is that somehow an effect of the prednisone, or just pure coincidence. I'm trying very hard not to become a hypochondriac!

[Sangye]

I agree with Jan and Elephant. It's not always as straightforward as actually seeing diseased tissue (assuming he even knows what to look for!).

My nose is a good example right now. The outer part has been increasingly painful for almost a year, the cartilage is loose and the outside of my nose is irregular in color. Occasionally I have pain on a small area of the septum, along with very small infrequent crusting, but nothing else inside the nose. I know this is Wegs but since the tissue looks pretty normal, they can't really call it nasal involvement. My docs concede something is happening there. Hopefully it can be contained by the rtx before it worsens.

I think the "vasculitis" vs "granuloma" distinction can only be made by a Wegs doc. It depends on how the Wegs acts in different areas as well as over time. That's my understanding, anyway.

[LilyPony]

Sangye - Gosh I have this uncanny ability to hijack threads, don't I? You say that your nose is irregular in color on the outside. My biopsy confirmed involvement is the lacrimal gland area of one eye. That eyelid has a small area just above the eyelashes that looks kind of bruised all the time. The entire eyelid is ever so slightly darker than the healthy eyelid. It looks like I have a little eyeshadow on the one side. Of course after makeup, it's not noticeable at all. Is that similar to the discoloration you have on your nose?