Need some advice

[melbourne andy]

evening all
it has been a while since i have been on here, had the sinus biopsy done as well as couple of other things at the same time, the results came back negative , my concern is taking the methotrexate, over the last few weeks after taking them I have suffered with either back pain (between the shoulder blades) and then the last 2 Friday nights lots of pain(scleritis) again in my eyes, to the extent that I am unable to sleep without being dosed up on some rather serious pain killers .
other than this it seems as though I am constantly living in a fog, my thought process is some what clouded, to the point it is affecting my work, the weekends are spent trying to feel normalish again for Monday, I seem be unsteady on my feet as well, but this does get better by Monday, I also suffer a lot with night sweats and cramps sometimes very painful, which again is affecting my work through lack of a good nights sleep, all this seems be tied in with the methotrexate.

I am seeing the rheumy in the next couple of weeks, I was going to ask him to change me onto something other than methotrexate, preferably with fewer side effects.

what is everyone else on other than methotrexate.

am I correct in my assumption of it being the methotrexate.

thanks in advance folks

[Pete]

Hi Andy,

The symptoms you describe are generally indicative of active disease - especially the cramping and night sweats. When you see your rheumy (soon, I hope), make sure you fully describe your symptoms and list all meds including OTC meds (such as aspirin, vitamins, dietary supplements).

In my experience, methotrexate has been used as a maintenance drug. I was on cytoxan to bring the disease under control. I now take 15 mg/week of methotrexate as maintenance and I'm down to 2.5 mg/day of prednisone. I'm in a stable remission. My rheumy gave me two infusions of rituxin when I showed signs of kidney involvement awhile back. She only plans to use rituxin to combat any flares.

You didn't mention taking any corticosteroids, e.g., prednisone, to deal with inflammation. This drug can help you feel better, but it comes with its own set of side effects.

Good luck, and let us know how you're doing.

[drz]

The most common alternatives to MTX are azathioprine and Cellcept or Mycophenolate Mofetil

[annekat]

I've heard of some of people on here using methotrexate as the initial treatment (along with pred, of course), especially if the only involvement seems to be in the sinuses. I seem to remember it being successful in some cases. Maybe since they didn't get a positive dx, they are giving you a milder drug than if they had.... who knows. In any case, if it is not working and you still have disease activity and feel yucky after being treated for awhile, maybe you need a higher dose or a different med entirely. On the other hand, if it has only been a couple of weeks of treatment, possibly that's not enough time for you to get used to the side effects and have enough reduction in disease activity to feel much better. Good you are seeing the rheumy soon and can discuss all this with him.

The pain symptoms you describe don't sound like MTX, but everyone is different.

[gilders]

Hi Melbourne Andy,
Just thought I'd mention that out of all the biopsies, sinus is the most unreliable for WG diagnosis. Having said that, if other organs (lungs, kidneys) haven't been effected then there would, obviously, be no point in biopsying them.

Ideally you need to be certain if WG is active or not which isn't always easy. If you are active then pred and cyclo may be needed. Pred tends to start working quickly whereas some of the other drugs take a while to take effect (I'm not sure if methotrexate is quick acting or not?)

[mishb]

Maybe it's just what the Melbourne doc's give.

I started on MTX and had a positive sinus biopsy for WG, however I don't have any of these crazy symptoms that you are having.

I hope it is just from the MTX and not from WG making a new appearance

[Alias]

Methotrexate can be used to induce remission successfully, depending on extent of disease. It was in my case, along with prednisone to bring down the inflammation.

I do agree with Pete that the symptoms you describe sound more like active disease than drug side effects. It takes MTX a number of weeks to kick in and do its job. I found the side effects of prednisone to be much more troublesome.

So... to answer your question, I don't think it's safe to assume that the complaints you describe are due to MTX.

[melbourne andy]

Evening all
The only reason I think it the methotrexate is that I take it on a Friday, 10mg in the morning with breakfast and 10mg at an evening with tea, over the last couple of weeks I start suffering around 2 pm on a friday, things tend to get better over the weekend, the rest of the week is fine.
It then starts again the following Friday, granted I could be jumping to conclusions, it just seems a bit of a coincidence to me.
I am also on 15mg of pred a day, down from 20mg.

[Alias]

Andy, I take injectable MTX once per week, rather than oral as many do. My doc thinks it is more effective. I notice some minor nausea and fatigue sometimes, but nothing too bothersome. I'm sure it varies a lot between patients. Possibly it is not the drug for you, as you suggested, but it is widely used in cases of "limited" GPA because it is generally well tolerated and less toxic than some other options. Every case is different. I think the prednisone is very important in getting symptoms under control. Your doc prescribed the dosage you are on for a reason (presumably), but I started at 60mg per day for two months, and have been slowly tapering for more than a year now. Maybe that's something else you want to discuss with him.