I have been taking MTX well over a year and Embrel over six months. For the first time in two years I am comfortable. I recently moved and have a new Rheumatologist. He has decided to stop my MTX as he believes I have been missed diagnosed.
He instructed me to reduce the dosage by 0.1 cc each week. If I have pain to stop decreasing the medication and increase my next dosage by 0.1 cc and continue with this dosage until my next appt.
I decreased the dosage by 0.1cc and by the end of the week I was hurting and stiff. I blamed the weather and decreased the dosage again the next week. Two days after the second decrease I was miserable and could hardly function.
I immediately went back to the original dosage and began feeling better after a few days. As many of you know this disease leaves you feeling like a psycho much of the time. Has anyone else had a similar experience? Is it possible to have such a dramatic increase in pain after such a short period of time? Or have I finally lost my mind?
There have been several discussions recently about the fading power of MTX over just the period of one week and that's just on a regular dosage. You might want to read those.
No, I don't think you are crazy. I think the RD is. I'd look for another doctor if he doesn't change his tune. You might want to call your former RD and explain what is going on. Bet that doctor wouldn't be too happy and might intervene for you or least help you get to someone who would really take care of you.
It's not you. Stick to your guns and demand the treatment you know you deserve. Your instincts are telling you that this isn't right for you.
I have heard people mention that coming off a med makes it harder to take effect when you go back on it. I would be careful when stepping off of the medication. If you feel pain, stay on your regular dose. You gave it a shot, now see what he has to say.He said he thought I had been missed diagnosed because my sed rate never increased. My previous RD told me we may not see changes in labs for many years. She based her diagnosis off of symptoms, xrays and family history. You see my mother and 3 of her four sisters have severe RA, her mother and several of her sisters had severe RA.
The Embrel and MTX combination had dramatically improved my life. I had been able to discontinued all narcotics and take NSAID's PREN. As soon as I became stable her decided to change my meds. Not long ago I went through a period of please God let me get my kids raised because I can't live this way. I have taken the MTX for over a year and a half. My RD was cautious about adding Embrel due to a mononeuropathy in my left lower extremity. We finally agreed the benefits would out weight the risks and gave the medication a try. After 3 months I have seen a dramatic improvement.
My last appt. I told my RD I felt better than I had in years and thanked him, in return he decreased my MTX. Why fix it if it's not broke! I called his office yesterday because I flew with my daughter to her first semester of collage away from home. My lower extremities and left upper extremity were very stiff, sore and swollen after the flight. I woke the next morning and could hardly walk. Usually the stiffness goes away 30 min to an hour but time it took hours just to be able to walk without excruciating pain. I spoke with his nurse and explained the situation and told her to let him know I had increased my MTX back to what I considered therapeutic. I was not going back to being miserable. She told me he was OOT but she would let him know, she added he probably was going to be upset with me. I told her when he tried RA and still had the same opinion I would listen.
I have been a nurse for 12 years. You would think it would be easier for me I treated patients with Humira, Remecade, MTX before I knew I was sick. I treated all of my patients with dignity and expect the same from the nurses who are treating me.
You keep sticking to your guns. I do not understand this doctor's position or attitude. But you obviously know what you need. Fight for it. If you don't get cooperation, then insist on a doctor that knows how listen to their patients.
My doctor usually has the opposite problem with me. I'll get to feeling better and want to do go down on the medications. He'll say, let's just wait and see a bit longer. He's usually right. I'll be feeling better only for awhile and then back in the same boat.
I think one of the problems is that once you are showing progress on the Enbrel, they want to lower the MTX. That could be in the back of your doctor's mind. But if it's not working, it's not working.
The nurse's attitude stunk. I hate when they treat you like that. Patient does not equal stupid. I'm glad you are one of the nurses that understands that. I love the nurses at my doctor's. His staff is great and it does make a huge difference in the care you get.
Remember, stick to your guns!