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Thread: Methotrexate as an alternative to Cyclophosphamide

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    Default Methotrexate as an alternative to Cyclophosphamide

    See this article: An analysis of forty-two Wegener's granulomatosis ...[Arthritis Rheum. 1995] - PubMed Result

    Seems that their level of patients that achieved remission is skewed in my view. That's quite a high percentage. It doesn't say HOW they were affected, just that they weren't experiencing life-threatening symptoms.
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    Here's a better one: Substitution of methotrexate for cyclophosphamide ...[Medicine (Baltimore). 2007] - PubMed Result

    Has anyone heard of a "Birmingham Vasculitis Activity Score" referred to in the above?
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    You can see the BVAS form here .

    I'm not sure how you mark it, though. Remission is a funny concept. As far as medics are concerned, it seems to be when there are no measurable pathological markers (ie ANCA/CRP/ESR) or acute physical symptoms. I get the feeling, and believe myself, that disease activity can be ongoing at a low level without clear measurable signs for years. As somebody who's never been able to come off meds completely (for 30 years) I would hesitate before claiming that I've ever really been in 'remission': rather, I've had good times and not-so-good times and utterly c**p times. BVAS at least allows the patient some input into patient reported symptoms (for instance, I still get crusting, sinus problems, arthritis pain and chest symptoms although they tend to be mild and wildly variable and I have negative bloods).

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    Default Is meth & pred ok as only treatment?

    I was just diagnosed in April and have "limited WG", no kidney involvment. They have not been able to biopsy anything positive but do have elevated ANCA's and proteinase 3 levels. Have had significant dyspnea and "lung tightness" with 40% decrease in pulmonary function test. So... with all that sort of inconclusiveness my rheumy has put me on prednisone 15 mg/day and methotrexate once a week. She said I would be on methotrx for 3-5 years. We tried to decrease the prednisone by 2.5 mg but after 3-4 days started having hard time breathing again and nose started "drip, drip, drip" again. Is it ok to treat without cytoxin? Is the prednisone just masking the mild WG I have now? Has anyone gone into remission on methotrexate instead of cytoxin?
    I reviewed the articles you posted (thank you) but am wondering if there is anyone on this forum with a positive methotrexate only experiance?
    Also want to say thank you for this forum, it has kept me sane... and occassionally laughing.

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    Do you have a Wegs specialist involved? It's the most important element.

    Your lung function is seriously compromised. Even with lungs fully hemorrhaging, I still had normal function on the tests (at high altitude!).

    Methotrexate plus 15 mg pred-- neither sounds like enough for symptoms like that. (And a 2.5 mg drop from 15 mg is HUGE) If a Wegs specialist has you on this protocol, then fine. But anyone else, nuh-uh. I suggest you get an expert involved ASAP. Meth and low-dose pred are enough for many people--even newly-diagnosed-- who have very low activity of Wegs. Your signs/symptoms are not low level.

    My JHU doc (a Wegs specialist) just put me back on cytoxan, after 3 yrs. He's very conservative about using such a toxic drug, but my lungs aren't doing well, and I need it. He said, "If we lose your lungs, we lose you."

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    Default meth and pred

    Hi Momof3,
    You'll get better answers about this question from others.
    From my stand point, I can say for me I started on Cytoxin and 60 mg of prednisone and tapered down to 5 mg pred. The next change for me was Immuran and still 5 mg pred. In Nov 08 some activity was going on but nothing alarming until April. I have granulomas on my leg and two spots started to act up. At that time I was put on methotrexate and back up to 60 mg pred.
    I don't feel that I do well on the methotrexate but it could be a combo of other things. I'm currently on 20mg of pred and 8 (2.5)pills of meth weekly.
    Usually the day of taking the methotrexate I get awfully fatigued and my hips and lower back hurt.
    When diagnosed (Aug.21 will be 2 yrs) I didn't have kidney issues but had a huge granuloma on my right lung.
    I hope you find the answers you are looking for.

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    I am on mxt and pred only with OK success. I only have respitory symptoms (as of now). I agree with Sangye, for your symptoms you do not seem to be on the proper drugs to head towards remission or not enough of them anyway?
    That is my un medical opinion. I just wanted to respond to your original question regarding those on MXT only.
    Hope you get the help need and soon!
    Lisa Coffeelover

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    I have to agree that your treatment does sound quite mild, but it is hard to judge over the internet and with no medical training . The more usual treatment regime is to hit the immune system hard in the early days with high doses of Cyclophosphamide and Steroids in order to arrest the development of the disease. Once all the symptoms have settled, this is then backed off in terms of dosage and toxicity.

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    Oh these discussions of medication. I am currently down to 10 mg pred and tomorrow I see my interist. He is planning to drop my chyclophsphamide from 150 gm to ? Or maybe some alternative. I've been on the chyclo 9 months. What is the standard procedure at this time? I have been feeling remarkably good except for the little odds and ends we all seem to feel at times.

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    You need to get off the cyclophosphamide as soon as possible. Next step is usually Azothiaprine.
    (drug names may vary )

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