New Member, first post.

[woz]

I have only just bee Diagnosed with Wegener's (April 2013), at the moment I am down to 20mg prednislone, 200mg cyclophosphamide and
bactrim 3 tablets a week.I have some lung and kidney involvement, which only looks to be minimal (at this moment). I have just gone back to work, after having 11 weeks off, ( only 4 hours a day) seem to good, so far! My doctor is looking at getting me off cyclophosphamide (playing around with the dosage) towards the end of June. If anybody has any information, I would be truly grateful, as most of my Doctors ( I am seeing 6), haven't had a lot of experience, dealing with Wegener's. My main Doctor is a Chest/thoracic Specialist, who has been absolutely brilliant, and has spent a lot of time and effort, to get me to where I am now.

My Question is, how do they usually take someone off cyclophosphamide, and what do they usually put them on, I know that every ones
Wegener's is different, and its a bit like finding out how long a piece of string is, but if anyone has any info, that would be great.

Regards Woz.

[andrew]

The standard method of treatment is to start with the sledgehammer (cyclophosphamide also known as cytoxan and easier to spell haha) and then once things have calmed down a but, go to a normal hammer like Immuran or Cellcept which, while still being immunosupressants, are gentler than cytoxan. There are a bunch of others too and it depends which drug does the job - for some like me it's Cellcept and others it's Immuran or something else.

As for coming off cytoxan, I can't really remember how it was done for me. I THINK I was stepped off it over a week or two, gradually introducing the new drug while lessening the cytoxan. Someone with a better memory than me and/or more recent experience can better help with that question :)

[mishb]

No help from me, I'm sorry. I have only been on methotrexate (MTX).

I just wanted to say welcome to the forum. This is the place to come when you want answers to most questions.
Where are you from Woz? We have people on here from all over the world.
If you haven't done so already, check out the weggie map - someone may be close to you.

I hope someone will be by shortly to answer your question.

[Pete]

Welcome to the forum, Woz!

Cytoxan, as Andrew has noted, is the sledgehammer used to get the disease under control. I was on it at dosages of 100-150 mg/day for about 16 months (excluding a two-week failed trial with immuran). On my first visit to my wegs doc at Cleveland Clinic, she said that the standard protocol would have been 4-6 months on cytoxan and then transition to a milder immunosuppressant such as immuran or methotrexate. When I made the transition last year, I was off all immunosuppressant therapy for about 10 days with no ill effects. I now take 15 mg/week of methotrexate and am in a medication induced remission. I expect to be on mtx for at least another year. I have no side effects from it, so continuing isn't an issue for me.

As for prednisone, getting off it may not be easy. I've been off it for about two months. I tapered off at the rate of 1 mg every two weeks.

I currently take 15 mg/week of mtx, bactrim 3x/week, and 1 mg/day of folic acid (to prevent possible hair loss).

Hope you have a speedy return to good health!

[Dirty Don]

Woz, welcome to Wegener's forum, it's a wild and wooly wide, er, ride...oops, sorry, not enough coffee yet. But, welcome anyway. Sounds like your docs are making a great effort...are they consulting with any WG experts yet? If not, they should be...experience seems to be the best policy with WG. Please ask lots of questions and contribute when and how you can! Best to you.

[annekat]

Welcome, Woz. You are starting off on the same treatment as I did, although already being down to 20mg prednisone when you just got dx'ed in April sounds pretty soon to me. If you can get away with that, great, because it might keep your adrenals from shutting down as happens to most of us, since we are on high dose pred for a lot longer than that. Also, getting off the CTX after only 2 months sounds a little soon, though, again, if you can do it, great. Many of us, including me, were on CTX for several months or close to a year. In my case, my CTX dose was tapered over a couple of months, and then I was started on MTX while still on the smaller amount of CTX. My doc is not a specialist and may also have done some "playing around" with dosages as you imply your doc may do... however, this is serious business, so if there's a way to connect with a specialist, if your doc isn't one, that would be a good idea. There is a list of them on the Vasculitis Foundation website. A lot will depend on where you live, as some parts of the country, including mine, are pretty remote from any real WG specialists. In my case, it has worked out OK so far, and I'm doing well, but not everyone may be that lucky.

[Alysia]

Hi woz,
I dont have any experience with CTX.
only to tell you welcome to the forum :smile1:
I hope you will continue to feel better and better, remission is possible.

[woz]

Thanks for the info, I will keep in touch.

Regards Woz.

[woz]

Thanks for the comment, I will keep in touch. Australia, 30mins inland from Byron bay.

[mishb]

Another Aussie.

My guess is that your doctor had never seen WG before......am I correct. But with the team you have, they should be able to keep you on the right track.
Do you have to head to Sydney for specialist treatment or have you got somewhere local?

I head in to Melbourne for mine and they have a vasculitis clinic on Mondays and tell me that they see hundreds of weggies throughout the year.

Best of luck for the reduction/changeover.

[Hal]

Hello Woz... welcome.

I agree with above comments that taking you off Cytoxan after 3 months might be too early. Typically the dosage is based on body weight and the standard treatment is 5-6 months. You never mentioned how serious the disease activity was when you were diagnosed, but assuming it was high, then 3 months does seem a bit early to me. I am not a medical person, so take those comments as coming from yet another patient who has "been there done that".

In my case, when the switch from Cytoxan to Immuran happened, I stopped taking the first drug and did not start the second one until after about 10 days, to allow my body to flush some of the toxins away first. That is why you should also now be drinking 2 litres of fluids per day.

Hope it continues to improve for you though!

[woz]

Hello Woz... welcome.

I agree with above comments that taking you off Cytoxan after 3 months might be too early. Typically the dosage is based on body weight and the standard treatment is 5-6 months. You never mentioned how serious the disease activity was when you were diagnosed, but assuming it was high, then 3 months does seem a bit early to me. I am not a medical person, so take those comments as coming from yet another patient who has "been there done that".

In my case, when the switch from Cytoxan to Immuran happened, I stopped taking the first drug and did not start the second one until after about 10 days, to allow my body to flush some of the toxins away first. That is why you should also now be drinking 2 litres of fluids per day.

Hope it continues to improve for you though!



MY first ANCA test was 160 on the 2nd of April, I had another test at the start of may, and It was 40. I am about to have another test, next week, I will be interested to see what change there has been, as I am now down to 15mg pred( still taking Bactrim 3 days a week, as well as 200mg Cytoxan). My bloods are all good, and I have been religiously drinking around 2.5-3 litres of fluids daily since being diagnosed.

Thanks for the Input, Woz.

[annekat]

MY first ANCA test was 160 on the 2nd of April, I had another test at the start of may, and It was 40. I am about to have another test, next week, I will be interested to see what change there has been, as I am now down to 15mg pred( still taking Bactrim 3 days a week, as well as 200mg Cytoxan). My bloods are all good, and I have been religiously drinking around 2.5-3 litres of fluids daily since being diagnosed.

Thanks for the Input, Woz. GOOD FOR YOU, drinking all that liquid while on Cytoxan! It was the only thing that gave me peace of mind while taking it. Other than that toxicity risk, I was very happy with the way CTX cleared things up for me.