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Going to start 2 1/2 MTX start today

04 Feb

I have been doing well. I feel confident that I will be fine to wean down a little further starting today. I do wonder though, will my body eventually realize, “hey I’m not getting enough of this damn drug, so I’m going to relapse!”  I can never know when that low level is…..until, that is, 6 weeks out when the therapeutic level has been diminished and depleted in my body and the evil disease begins again. Please, please please NO! I never want to relapse again!! I can not even bear to think about the pain, the drenching sweats and fevers to 103 degrees, the chattering teeth so hard that my jaws feel like they are in cramps, the tell-tale rash that starts first as a warning that the level of the drug is now too low and soon the spiral is inevitable. There is no way pst this point. I know very high steroids will be the only way to return to normal and then a very high dosage of MTX and then vomiting, vomiting, vomiting. UGH!   But really, its the big, fat, bloated face that just kills me. I am so vain.

I was tired yesterday. I was very, very, very, tired yesterday. I worked a long day at one of the 5 hospitals I go to. And I over did it, but my productivity looked awesome!! But then I drove  home with the heater up as high as it would go, freezing cold. I know this symptom, it means I have over done it. My wonderful husband had baked chicken, basmati rice, broccoli and nice green salad and he hand made carrot cake for dessert. I am so lucky to have a supportive husband, that really works too much and even has time to make a great dinner. I ate then went to sleep for 13 hours.

One would probably wonder why then go down on the number of pills per week? Well, I am so tired of taking these pills. I get sick to my stomach, I feel fatigued and it ruins my endurance. So, If I can just lower them so that I feel 95% normal then I will be happy. I mean, seriously, I dont ever want to completely off. I have tried 3 or 4 times before and we all know that story. So I am ok with staying  at a low dosage. My desire would be to get down to 2 and stay there, forever…

Here’s a strange thing, I saw the physician, that fateful physician, the one who told me ” OH, that patient is not infectious in that way, you dont need to put on the protective garb” the other day at one facility have been working at occasionally. I asked him, “so you left the other hospital?”, he said “yes, I did” and had a strange look on his face.As if he had a recollection about something, but couldn’t put his finger on it. Then he walked away. He has no idea how that day, 9/2/2008 changed my life. I tried to tell him one day, at the original hospital about a year after it happened, but he said ” Nobody gets that disease, it too rare” and then he walked away, just turned on his heel and walked away. I watched him walk away thinking to myself, “hmmm….interesting, I almost died and tried to let him know of what and he thinks I made it up. “oh well…..” I had come back to work for a few months at that previous hospital, when I was well enough. Oh, if he only knew……how rare it is indeed.

 
4 Comments

Posted by on February 4, 2012 in Uncategorized

 

4 responses to “Going to start 2 1/2 MTX start today

  1. Marjorie Duker

    June 3, 2013 at 9:39 pm

    Valerie, When I first got sick with Adult Stills disease, the first doctor I went to said “drink water” the second one told me to go home and exercise. The second time I went back to him, he sent me to a rheumatologist. Thank God. I’m just beginning to get back to a normal like, as best as normal can be. I’m just happy to be moving and without paid. Good luck to you.

     
  2. Valerie Hill

    March 16, 2013 at 3:33 am

    was diagnoised back in February of 2012 and one day my family and i was moving from an apt into our new home an as we was moving i started to hurt in my knees real bad so our last load i got worser so my husband had called 911 for me and that evening we ended up at Emory hospital midtown in the ER and i was in so much pain that i was crying to the top of my lungs, so when they took me to the back and the doctor saw me she game in an said you have a fever 103 an she said we wanna know where this fever is coming from so she admitted

     
    • Valerie Hill

      March 16, 2013 at 3:42 am

      in the hospital i wasbin the hospital from feb 2nd to feb 9th and they tested me and everything was negative an the only thing they came up with was adult onset stills disease and i did breakout with alot of red salmon rashes i was scared tobl death so they put me on a steroid, and some strong percocet for the chronic pain

       
      • stillsdiseaseblog

        March 16, 2013 at 4:13 pm

        Valerie, I hope that you are feeling better. Your story sounds a lot like mine. have you seen a Rheumatologist? I’m curious if you are still having symptoms. Until I found a doctor to treat me, my illness was getting worse and worse. I am now stable taking methotrexate 2 pills once a week.

         

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