So much for feeling good, starting methotrexate on Saturday

[Orpheus]

So I had a relapse a couple of weeks ago and in the hospital my doctor decided it is time for me to be in methotrexate. Prednisone + Cytotoxin didn't put me in remission last year so I was taken it off Cytotoxin sooner then my doctor wanted and had 4 dosages of Rituxan last November then 2 dosages in April 2016 and I am getting another 2 dosages in November (basically every 6mths).

I was very sensitive to Cytotoxin and I know I am going to be sensitive to methotrexate. I had a good couple of months when I didn't feel sick from either my disease or the medicines I was on. So this really sucks.

[Pete]

Hey Orpheus!!

I was on cytoxan for 16 months. I tolerated it pretty well and got close to remission. But, cytoxan is a pretty rough drug. My wegs doc took me off it and put me on methotrexate. I went about 15 months before I got my first rituximab. I was on methotrexate for about three years. Summer 2015, the side effect of fatigue for a couple of days after my weekly dose got to be more than I wanted to deal with. In August 2015, I discontinued methotrexate and had four doses of rituximab. I've been fine since. Just jumping through the hoops to get another single dose of rituximab now.

Here's hoping you get what you need from your meds.

[Gab122]

Hi Orpheus, sorry you have to go back on meds. And I'm hoping methotrexate helps you into remission with few side-effects! How are your knees doing? are the dr's hopeful they will heal?
God bless and heal you.
Gab

[Orpheus]

Hi Orpheus, sorry you have to go back on meds. And I'm hoping methotrexate helps you into remission with few side-effects! How are your knees doing? are the dr's hopeful they will heal?
God bless and heal you.
Gab

Had a MRI done last week and my knees are as good as they are going to get. Doctor said they aren't damaged enough for a knee replacement but there is still necrosis in both. So this last week was the first time in 15mths I am walking around unassisted but I still need the wheelchair when I go out for appointments. Doctor said if/when the knee(s) collapse that's when I will get the knee(s) replaced, which really sucks.

It is weird because I read how slowly Wegeners affects people but for me it is the exact opposite. Last April I started showing signs of the disease (runny nose, sinus headache) and by mid May I was in the ICU. Fast forward to 2 weeks ago I had a doctors appointment on Tuesday and I felt great, by Friday morning I was in hospital for the weekend. So all my doctors are really concerned by just how fast the disease develops which is why I get Rituxen done every 6mths and now adding the methotrexate.

It is what it is

[Gab122]

Any chance they could just do ritux before nov and maybe skip the methotrexate? Did they run labs when you were at the hospital a couple weeks ago? Wishing you the best.

[Orpheus]

Any chance they could just do ritux before nov and maybe skip the methotrexate? Did they run labs when you were at the hospital a couple weeks ago? Wishing you the best.

I'm afraid not and I think the doctor wants me to take both at the same time.

I just took my first dosage now, 20MG so lets see how this goes.