Methotrexate side effects - when do they kick in

**vdub** · 12-03-2010, 12:07 PM

I have been doing 15mg mtx once a week for 7 months. Not sure if I feel crappy from the mtx or feel crappy from the pit drugs or the wg. But I do generally feel crappy. Given that, I do have several beers a day.... So far, no problems and AST, ALT, and other liver functions are all good.

I have pondered this delima (beer or no beer) a lot. The WG will cut my life expectancy by X amount -- who knows how much. I'm 60 now and expect I'll make it to 70 given the WG.

The lack of a pituitary increases death by 1.3 to 2.2 times more than an otherwise healthy person. So, that cuts me back to reaching maybe 65 or, if I'm lucky, 77. Believe I'll drink the beer and be happy. Maybe I'll have some wine, too....

I had an MRI of my brain last night. The pit is still a useless, lifeless, clump of tissue and hasn't grown any, so that's good. But the MRI also showed that I have sinusitis, so increased my normal amount of cortisone (now on 30mg/day).

On the advise of you guys, I have requested a referral to the Univ of Utah Vasculitis Center to get a 2nd opinion. Maybe they'll take me off the mtx altogeather.

**pberggren1** · 12-03-2010, 12:31 PM

Hi vdub:

It is hard to know what the right thing to do is sometimes. I'm not sure if a few beers is going to interfere with your meds or not. It is good to hear that you are going to get a second opinion from Utah.

**elephant** · 12-03-2010, 02:01 PM

I am glad you are getting a second opinion, hope it is someone who see's many Wegeners patients. Hope you get in soon.

**Sangye** · 12-03-2010, 02:09 PM

Vdub, I understand your logic on one hand, but consider this: Several beers a day while on mtx is way too much alcohol. Even if your liver enzymes look okay right now, damage can occur gradually and show up suddenly. With the liver, that damage is often permanent. You can live a regular lifespan with Wegs, but you need your liver to do it. Poor liver function means you can't take the meds you need to keep Wegs under control. Wegs doesn't necessarily kill you quickly. It can take decades of losing one organ or function after another. Run this by your doc. I'm sure s/he will say the same thing.

**Jack** · 12-03-2010, 11:13 PM

Originally Posted by andrew

Snapped a rib again this morning (feels like the same one as last time) from coughing

How is the rib Andrew? It is the third day for me and that always seems to be the worst. Rib pain seems to behave very oddly with me - it hardly hurts at all at first then gets worse for a few days before starting to slowly improve. However, still get some episodes of pain weeks later and it takes a very long time to clear up completely.

**JanW** · 12-04-2010, 04:29 AM

I was stopping in to say the same thing that Sangye says, vdub. I too take mtx, and can tell you that even when I was on the tester dose, and was told that I could drink moderately, my liver enzymes spiked enough that the doctor took me off of of the drug and thought I might never be able to tolerate it. I was nervous about this naturally, because he said that imuran or cellcept would likely have more severe side effects, and I didn't need the big guns of rtx or ctx. The thing about WG is that, in addition to not wanting to mess up your organs, you don't want to have rule out drugs you may need to have in your arsenal at some point because this is a tricky disease.

By moderate I meant that I would probably have 5-6 drinks on a weekend, and never drank around my dose day (which was Wednesday at that time). I have cut that back to 1-2 drinks per week, and never had a problem since.

He was taking my bloods biweekly at the point, and noticed the different within 2 weeks, at a 10 mg dose.

It's far from certain that WG will shorten any of our lives. Has more to do with the severity of the disease and it's treatment.

**andrew** · 12-04-2010, 08:05 AM

Originally Posted by Jack

How is the rib Andrew? It is the third day for me and that always seems to be the worst. Rib pain seems to behave very oddly with me - it hardly hurts at all at first then gets worse for a few days before starting to slowly improve. However, still get some episodes of pain weeks later and it takes a very long time to clear up completely.

Hey Jack. You're weird!

My rib is still killing me and causing me to walk like I have a pole up my nether regions. The issue is that I'm still coughing. Each time I cough I feel a 'crack' again. I had a coughing fit yesterday morning. That was interesting to say the least. I have a bucket full of Panadeine Forte which helps a lot with the pain and relaxing the muscles around the rib. I'm taking as few as possible though.

**Sangye** · 12-04-2010, 08:12 AM

Omigosh, I am just cringing reading about that, Andrew..... Cough, snap, cough, snap....

**andrew** · 12-04-2010, 08:22 AM

I saw the lung specialist dude yesterday who actually turned out to be the Registrar but even with his training wheels on he knew a LOT about WG. We had a good discussion about the disease. He saw me for nearly an hour.

He is of the opinion that the persistent cough is the result of sleep apnea and the crap I'm coughing up is the result of a virus not an infection because I don't have a fever. He also noticed a spot on my left lung (from a recent x-ray) which was there when I saw his colleague back in 2003 according to my file. He needed a copy of that x-ray (which I've probably got in the garage somewhere) to determine if there have been any changes over that time. He sent me to x-ray to get a comparison picture as well as they have images from July and early November.

Sidenote: X-ray rooms are awesome now, they're all digital. No film no muck with, just point and click and the image gets sent to the requesting quack. Wasn't there at the beginning of November when I had my last one. Certainly wasn't there when I was 16 doing work experience in the hospital radiology dept. That was super fun! End sidenote.

He listened to my chest for a long time. He picked up my leaking Aorta valve as well. Damn, I was doing my best to hide that hahaha. I couldn't do the lung function test due to my cracked rib so I'm booked in again for February.

I'm also going for a chest CT, a sleep study and will see a dietitian. Will also have blood tests just before the next appointment in Feb and a sputum test if I can remember to get a jar from the hospital and am able to hoik up enough to get a decent sample.

He asked a lot of questions which I though was great. He apologised for taking a long time to read my file. I told him I had all day and he could take his time.

Oh, he also gave me a nasal spray to assist with breathing overnight and hopefully then also with the coughing??.

Once he was done he called in the Specialist, who also was a WG encyclopedia, to confirm all he had done. Specialist gave it the big tick of approval and I could finally go to the loo.

Thanks to my Mum who took me and waited half the day for me to be done