Methotrexate

[KtheC]

It has been several years since I have visited these forums. Life has been very good as I have completely recovered from my near death attack of Wegener's. I now have a huge decision to make. My nephrologist has suggested that I be removed from the methotrexate I have been taking for the past 8 years. He thinks it's time. While I am very enthused about this my rheumotologist doesn't think it's a great idea. She said that there isn't any data to examine from other cases on what might happen as a result of not taking the medication. She has also consulted with several other doctors at Johns Hopkins to form her opinion. I have done some searches but have been unable to find anything as well. This leads me to great aprehension in discontinuing it and my gut tells me to keep going with it.
My questions to everyone is: Does anyone have any knowledge on this, or been through it? Or have any sites that have information?
Thanks!
Jason

[drz]

Depending upon what studies you view. Some people can get off their maintenance meds with no apparent problems and stay in remission. Other relapse within a year or two of stopping their maintenance meds. Different studies yield different rates so listening to your doctors advice is a good idea. The main thing is how big of risk a relapse will be for you. Also people sometimes relapse even while on their maintenance meds. And how big of a problem are the current side effects for you? Generally the longer the period of remission, the better they consider the prognosis for getting off the meds. You may not find a consensus on this and the decision will be up to you and your doctors. If you go off, slowly might be best with frequent lab work to monitor how it is going to be sure you catch any relapse quickly.

[Girly3800]

I can share my husband's experience. He was taken off his MTX in preparation of lung surgery - ultimately he had an upper lobectomy - not Wegener's and not lung cancer - some bizarre bacterial infection. Since he was doing well before and immediately after the surgery we collectively - him, his rheumatologist and me - decided to try without it. Between the end of April when he took the last MTX, and the middle of June he suffered a massive flare. It was not a severe as when he developed the disease initially but that may be because we knew what it was this time. At this point I think that his opinion is he is content to continue the drug - forever if need be. His doctor and I concur.

[vdub]

Does anyone have any knowledge on this, or been through it?
I was on mtx for 5 years. Last July (4 months ago), I was taken off mtx in preparation for knee replacement. My rheumy wanted to stay off mtx to see what would happen. Bad decision. I flared or, at least, got worse and went back on mtx in Oct. I'm still not back to "wegs normal" and really regretting staying off more than was absolutely necessary. I was on 20mg/week.

If your husband doesn't drink alcohol and has no indication of liver damage from the mtx or no other real good reason to go off the mtx, I wouldn't.

[Pete]

My wegs doc at Cleveland Clinic told me that if I came off mtx with no other immunosuppression, I would have a 40% chance of a flare within a year. I was taking 15 mg/week. Because my side effects from mtx were getting more severe, she switched me to rtx after discontinuing mtx in early August. So far, so good.

[Birdie]

My nephrologist has suggested that I be removed from the methotrexate I have been taking for the past 8 years. He thinks it's time.

Your "great aprehension" is justified.

What's the reason for him wanting you to stop taking it? Must be fear of side effects, just guessing of course. If that's the only reason then maybe a substitue treatment should be considered. Which is worse, side effects of treatment or a relapse? Which has the higher probability?

[Girly3800]

We agree - as most of you know, this disease is one of balancing treatment and trying not to screw up something else. His liver is good, quit drinking when he developed acute pancreatitis from the cytoxan and prednisone, before methotrexate. Now we balance everything against kidney function - not acute or severe at this point but we know from lab testing when something is affecting his kidneys.

[vdub]

I drank beer even when I started mtx. I continued normally for about 2 years with drinking beer and being on the mtx. My rheumy wasn't too concerned about it and several studies say its not a problem. My liver function continued without any problems.

What caused me to quit was the addition of 3 new drugs to my regimen. One of them, I think it was the gabapentin, really didn't like alcohol, so I just totally quit. I really miss not having a pint or two now and then, especially when I was in the UK last spring.

[Girly3800]

The rheumatologist would have been fine with a beer or two - the pancreatitis was the stopper - I wouldn't wish that pain on anyone.