6.5 weeks could prove…
[Huge Sigh]…scared…but I feel must try one more time…so scared… I feel like running to the MTX bottle for the dose, but at the same time, I know I must try. I ask myself, why am I doing this? Would it kill me to stay on a super low dose? What’s the big deal if I keep taking the MTX? My labs are good. But they have always been good when I was pulled off the MTX before. So, I don’t regard good labs an indicator to stop meds. MD: “Wow! Your labs are awesome! Lets pull you off the MTX!!” Then, WHAmO! 6.5 weeks later hello stills monster of the black lagoon.
I didn’t take my MTX this week. Mondays are my night. Have I been staying on MTX even though the dose is so low, my body may not even know I take it? If this true, placebo is great. Fear factor in play. Fear center stage. Fear take a bow. The repercussions of a flare are tremendous. My mind is compulsively thinking about not trying this stupid antic. There are some really bad things that happen to me when I flare that I have not written about. It’s happened twice. I have had surgery twice. Thinking about the possibility of going through surgery again scares me so much I am obsessive about it. My husband feels that if the fear of a flare is so overpowering then why not stay on 1 pill forever? I guess it would be fine?? Tragic that this disease is so random and idiotic. 6.5 weeks from today could prove I was stupid for trying this. It takes 6.5 weeks for the MTX to leave my body completely. I will sleep on this tonight. If I can not feel safe going off then I will wait a while longer to feel when the time is right. I see the new Rheumy tomorrow morning at 10:30am. I hope she is sympathetic and has seen AOSD before. I dont want to be her experiment. I have heard she is nice and that she had good “health grades”. This is reassuring. Thanks for listening. Have a good night friends.
Daily Update Adult Onset Still Disease flares methotrexate Rash stills Stills disease
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I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.
Adult Onset Stills Disease 
What a smart idea to ween yourself off a 1/2 dose at a time!! The trauma of this disease cannot be underestimated. Don’t be too hard on yourself–You have good reason to be cautious. Hoping your appointment goes well tomorrow!
I had my 6-month check up with my rhuemy yesterday. I always leave feeling like he doesn’t really get the disease. He doesn’t think to much of my chills because “it is cold outside”. Well, it is not cold inside where I have my robe on and am under a blanket and feel like ice water is running through my veins. I told him I still get the rash on my chest at night when I have had long, busy days. He didn’t have anything to say to that. I have been having a lot of pain in my big toe and swelling in my knee. He is trying a new med with me to see if it helps. He says I have osteoarthritis in both of those joints which comes on quicker after developing an inflammatory disease. *Sigh*
Despite all that, I don’t want more meds. I still take 8 MTX each week plus 2 plaquenil a day. I would just like some recognition that this disease does weird things. I don’t want it brushed off with “Well, its winter” or “You are getting older”.
Curious, I’ve been looking at your anti-inflammatory diet…are you still on it? Just wondering if I should try it. Wouldn’t you know, all my favorite foods fall into the category of “Don’t Eat” (:
I will pray for peace and wisdom. Wisdom for both you and your new Rheumie. I will be anxious to hear her assessment and plan. Forgive me for not remembering–are you on MTX 2.5 or 5 mg/week? If on 5 mg….consider just going down to 2.5 mg for 6 weeks and see how you do? I say this because I am on 1 mg of prednisone. My Rheumie has given me a weening schedule BUT he fears as I return to work for the first time in a year–part time only–that the stress and fatigue might be a problem. He knows I am doing well on this wee dose and admits it is probably doing very little if anything, but would rather me stay on it till I am stable in my new job. I tell you all this to say–stress, including the stress of weening medication–is not a good thing for us. So if you can go down slower or ask the new Rheumie about an every other week ween? Just pondering….
As I said, prayerful. I hope I don’t offend you by saying or doing this. Will hope to hear an update.
Patty
Thank you Patty. I appreciate the prayers and peaceful thoughts. Comforting and soothing. I caved in. I took only 1 pill (2.5). The anxiety of stopping completely was too much. My husband and I discussed it at length and feel 1 pill will still provide MTX. I have decided to go down 1/2 a pill in a few months. I know this might seem childish. I’m a grown up and I feel like I am being so childish. I agree with your Rheumy about the fatigue and stress of a new job. Especially stepping into a new position. Stress never seemed like such a big deal to me. I thrived on it. Now I get stressed out thinking about stress. I will keep you posted about tomorrow’s appointment. I hope you are feeling better.