Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hello everyone! I have not commented much lately but I do check in once in awhile. The last 9-10 months of have been a mixed bag of good and bad but I do have some questions for all of you with more experience (unfortunately) in this RA journey we are all on.
Please let me give you some updated information on my situation. I was diagnosed in 10/2013, started on MTX in 11/13, Humira in 3/14 and stayed on that until 8/2015. The MTX never seemed to do much which is why we added the Humira. I took them on the same day and the Humira really helped with my energy levels and side effects from MTX so I thought life was pretty good. By 2/15 I had to start on IM steroid injections for better pain control and stayed on them every 6 weeks until 8/15. Rheumy then switched me to Enbrel which was really hard for the first 3 months but then seemed to help once it kicked in full strength. I had to quit working in 1/2016 because of the fatigue, pain and brain fog. I am a nurse and just could not function properly with those barriers.
Not working really seemed to help with my pain and energy levels; for awhile. Now I am having significant difficulty with severe fatigue and almost constant achiness and just generally feeling ill. Specific joint pain varies depending on previous day's or few days activities but the fatigue and achiness are constant. I do have some good days, don't get me wrong but unfortunately when I feel good and actually get some "normal stuff" done like shopping, laundry, light house cleaning and cooking dinner I end up wiped out for a day or two after. I am having to take more Tylenol and ibuprofen through out the day just to get through. I take Tramadol and Tylenol at bedtime but still have to get up at night sometimes due to the pain. Sometimes I have to take Tramadol in the afternoon. I do have a hot tub now and it does wonders while I am in it and for about 30 minutes after I get out but I can't float in it all day, everyday! I do use it at least once a day before bed and sometimes once earlier in the day.
So finally my question is, at what point do we know that this is just how life is with RA vs. at what point do we tell the doctor this just isn't working. I am nurse, I know medicine can't cure or control everything. I don't want to sound like I am whinning but at the same time I just can't stand how I have been feeling.
My Rheumy so far has been great but I'm pretty sure I don't tell him enough. I don't intentionally hide things from him but I don't want to whine about things he can't change either. How do all of you handle this?
Sorry for the long post and thank you for taking the time to hear me out.~Lori
Please let me give you some updated information on my situation. I was diagnosed in 10/2013, started on MTX in 11/13, Humira in 3/14 and stayed on that until 8/2015. The MTX never seemed to do much which is why we added the Humira. I took them on the same day and the Humira really helped with my energy levels and side effects from MTX so I thought life was pretty good. By 2/15 I had to start on IM steroid injections for better pain control and stayed on them every 6 weeks until 8/15. Rheumy then switched me to Enbrel which was really hard for the first 3 months but then seemed to help once it kicked in full strength. I had to quit working in 1/2016 because of the fatigue, pain and brain fog. I am a nurse and just could not function properly with those barriers.
Not working really seemed to help with my pain and energy levels; for awhile. Now I am having significant difficulty with severe fatigue and almost constant achiness and just generally feeling ill. Specific joint pain varies depending on previous day's or few days activities but the fatigue and achiness are constant. I do have some good days, don't get me wrong but unfortunately when I feel good and actually get some "normal stuff" done like shopping, laundry, light house cleaning and cooking dinner I end up wiped out for a day or two after. I am having to take more Tylenol and ibuprofen through out the day just to get through. I take Tramadol and Tylenol at bedtime but still have to get up at night sometimes due to the pain. Sometimes I have to take Tramadol in the afternoon. I do have a hot tub now and it does wonders while I am in it and for about 30 minutes after I get out but I can't float in it all day, everyday! I do use it at least once a day before bed and sometimes once earlier in the day.
So finally my question is, at what point do we know that this is just how life is with RA vs. at what point do we tell the doctor this just isn't working. I am nurse, I know medicine can't cure or control everything. I don't want to sound like I am whinning but at the same time I just can't stand how I have been feeling.
My Rheumy so far has been great but I'm pretty sure I don't tell him enough. I don't intentionally hide things from him but I don't want to whine about things he can't change either. How do all of you handle this?
Sorry for the long post and thank you for taking the time to hear me out.~Lori
That said, I can tell you with great certainty that if your med is working, then it works. It doesn't work today, then not work tomorrow, then work again 3 days later, then quite for two days....... If you've been dealing with that for more than a few weeks, it's definitely time to have a heart to heart with your rheumatologist and insist on a tweak in the DMARDS. Remember, the cortisone should really be used very short term [others will disagree with me on this].....you need the DMARDS to control the progression of the disease, inflammation, and the pain.
Good l;uck.
I will get in touch with my rheumy ASAP! These unpredictable good days/bad days is really hard to deal with. I just don't know what I can do day to day.
Thanks again!~Lori
I know not everyone can achieve total remission, but I wouldn't give up trying. there are many other drugs to try: Remade, Simoni, Jelzanz just to name a few...