My name is Katie and I was diagnosed with RA around 3 months ago, at the age of 22. My first (and ongoing) flare began around 8 months ago. While living in the US, I received a misdiagnosis of pseudo-gout and was subsequently treated for the wrong disease for around 5 months.
After moving to the Netherlands a few months back, I demanded a referral to a rheumatologist. I have now been taking methotrexate for 11 weeks (9 with pills and two injections) and so far it has been hell. Thus far I have only experienced relief from taking prednisone (with or w/o methotrexate, doesn't matter), which makes me an emotional loon. Each time I come off the pred, the symptoms come back with a vengeance.
I realize that I have only recently begun the injections, and am aware that I may need to continue them for a while longer to truly see whether methotrexate might have an effect, but I just wanted to know if anyone has shared/shares my experiences with this medicine and also experienced with my rheumatologists' unwillingness to hear me/express concern when I say that my symptoms are extreme.
Without too much detail, here are the symptoms I experience on a daily basis:
Complete loss of appetite/aversion to most food, stomach cramps, low body temperature (on average it is 1.5-2 degrees cooler than what is normal for me) insomnia, night sweats, tinnitus, muscle weakness, fatigue, acid reflux/indigestion, waves of nausea, severely uncomfortable bowel movements, weight loss, dizziness, aches and pains throughout joints.
Needless to say, my daily quality of life and physical, mental and emotional wellbeing are truly suffering because of these symptoms. I have expressed concern time and time again, with no reciprocation of concern from any rheum. How much is too much?? Does anyone else feel as though their rheumatologist cares only about numbers on blood work, with no regard for general health and wellbeing?
I am a very health conscious person, and have been since around the age of 16. I eat a primarily meatless diet, with lots of fish, veggies and fruits, and minimal grains and dairy. I am very conscious about exercise and do a million things during the day to mitigate stress. I am doing everything in my power to regain some balance and control in my life, but it seems nearly impossible when feeling so terrible each day.
I'm a strong person with a high pain tolerance and am more likely to grin and bear it than admit when enough is enough. Basically, I just want someone to tell me: am I crazy for feeling that my body is trying to tell me that this medicine is not right for me??
Also, if anyone has insight or experiences with biologics, any and all information would be appreciated! (Have read official info many times, so am interested more in personal experience, though I am aware each person is different!) Advice from anyone dealing with RA in the Netherlands/Europe is also welcome!
Thank you in advance and well wishes to all!