meds not working

Hi, everyone. I'm new to this and could really use some insight and support. I used to be a Firefighter/EMT, always active and on the go. I'm 30 now and I was diagnosed with RA 8/2013 after symptoms started that April. My pcp thought it was Lyme due to spending much time in the woods and pulling off ticks. When he ruled that out, he referred me to a rheumatologist who diagnosed me on the initial visit with seronegative RA.

I've been put on different meds and nothing is seeming to work. I've tried plaquenil, mtx on 2 different occasions, Enbrel (allergic reaction), humira, 6 months of Orencia infusions (3 of those with mtx), and now Actemra. I've had 3 treatments of this so far. I've had ongoing GI issues and have lost nearly 70 lbs in the last year without trying. I'm allergic to prednisone and they had me d/c Aleve to try to help with my stomach. The fatigue is to a degree I have never experienced. I take tramadol and medical cannabis for pain and use lidocaine patches, though my doc has suggested something stronger than tramadol. I am very hesitant of taking the stronger pain meds. I work full time at a desk now and I am really struggling to do that. I miss work a lot due to flares etc. and though I have fmla and my bosses are supportive, I worry that can only last so long. Coming from such an active and physically demanding career to a desk job had been an adjustment in itself, and the RA has caused my entire lifestyle to change. I don't know what the next step is with meds or work and a part of me has thought perhaps I could stop all the meds see how I feel. I just don't know. Thoughts? Ideas? I appreciate in advance

Wow, sorry to hear things have been so rough for you. I know how you feel about the changes this disease has brought to your life, I had a heck of a time with this for years. I can relate to the issues with Prednizone as well. I was on it for a year and a half and while it brought my flare down it caused so many other problems it was not worth it. I'll never use it again for more than a few weeks at a stretch.

I was diagnosed 20 years ago at 26 and was in great shape. Volunteer firefighter, hunted and fished all the time, I worked outside as well. I miss working outside a lot but I sure am grateful I can still work. Im fine with a desk jockey position at this point. I've had this disease for 20 years and Ive worked almost the entire time. Ive had to take lots of time off and Ive worked from home for long stretches of that. I am just glad I can still contribute. I make the best of everything I can. I have some seriously rough patches but my friends and family as well as my church family have all been a huge support in those times.

I have been on several meds over the years and had some work great and others not at all. It takes a long time with many of these meds to find something that even works due to them needing so long to be determined if they are even effective or not. It is a trying thing to find the right one but hang in there. As far as the pain meds go I went a long long time not wanting to take them but eventually I realized that to continue working and trying to lead a somewhat productive life that they could help me. My doctor told me that there is a difference between addiction and dependence on these meds and I believe she is right. I still take them but I have been able to cut my intake of them by about half as I have recovered from a major flare I had last year. I am hoping to cut that even further as time goes on. There is no point to suffering with pain.

As far as stopping your meds, I have done this. I had taken Enbrel for over a decade and developed and allergy to it so I stopped all meds to give my body a break. I had an extreme flare after about 6 weeks that left me sitting at home in my EZ chair for about 4 months because I couldn't walk without a walker. I have tried all kinds of diets and some have helped to identify foods that I need to avoid but none of them have fixed me. I can't eat corn products without having my pain levels go up. Not sure what it is with it but I dont go near it or anything with it in it.

You might not have as extreme a reaction as I did but then again you may and it might bring to light that the meds you are on are making a difference but it is just hard to see because you are not back to "normal". For me it made it very clear. Unfortunately even with Methotrexate and Orencia I am still in pain, wake up every day with pain, and I don't sleep well without sleep aids. The pain is a whole lot less though and without them I am basically a cripple. RA crippled my dad by the time he was 40. I feel fortunate that I am not in the same state at 46. I have a lot to be grateful for. I try to make a point of thinking about this every single day. You do too.

Im sorry this is such a long post, I really hope that you feel better and find a med that can bring things under control so that you can get back to doing the things you love. Hang in there and remember, you are not alone.