haven't been on this site for a long while. After four months of Humira, it stopped working for me. I had horrible swelling in my feet, and so much in my big toe that my toenail lifted off and had to be removed. I could never get in to see my rheumatologist, even when having what I considered to be an urgent concern, so I switched to the Seattle Arthritis clinic. I was put on Remicade and that worked wonders. I have been receiving infusions for 1 1/2 years (still taking Sulfasalazine)and it has been wonderful...HOWEVER, for more than several months now the tendons at my ischial tuberosities (the bones on our rear-end that we sit upon), my hamstrings, low back and often my calves are hurting so much I can barely stand it. I am still working and exercising, but sometimes it hurts so much on my power walks that I have to repeatedly stop and try and stretch. I am not sleeping well, there is constant throbbing and that deep ache that makes my slightly nauseaus...and some tears now and then. My rheumatologist is having my dose increased (since it is wearing off about two weeks or more before my next scheduled infusion) and my insurance has allowed me to go a week early this time for my infusion.
My usual joints that flare-up are not bothering me too much, but my tendon attachment sites are. I am so exhausted for some reason that I am going to bed early and sleeping in late (when I am not working)...I'm worried and scared and don't know what is going on.,. Does anyone else have these issues?
I’m sorry to hear about this. With the fatigue that you’re describing, it sounds like this is a big flare. Are you sure your biological is still working?
In my experience, once tendons get inflamed it takes them forever to go back to normal. Does the change of time and the approach of winter make the pain or fatigue worse? Are you on any sort of anti-inflammatory?
Hi Sophia, Its very heartening to hear about your pain. I have been care-taking patients with musculoskeletal problems from the past 10 years and as in what I can tell you about enthesopathy is the treatment of this disease is giving drugs and medicines which will suppress the activity and symptoms of this disease but a permanent treatment is yet not available. Fatigue is a life-long problem with enthesopathy. But you can still manage this fatigue with the help of some pain management and maintenance therapy. Orthopedic Group Long Island have extremely specialized pain management sessions which might benefit you in reducing your pain and fatigue.
Ugh, Sophia. Ugh. Enthesitis is relentless, isn't it? I get it often in my elbows, knees and wrists. When I get a good bout of it I really have to change what I do. I keep exercising but I cut out anything that puts additional stress and strain on the insertion points that have flared up. For me that meant quitting yoga (my favorite) and indoor rock climbing. I do deep water exercise for a less stressful workout and am back on the treadmill (no incline else it flares up my knees).
The hardest part about enthesitis is the time it takes to heal. The inflammation in those areas takes forever, seemingly, to reduce. And while there's certainly pain in those spots, it isn't systemic. That localized pain can be treated with topical NSAIDs (like Voltaren Gel for joints close to the surface) and ice. I don't envy you the ones in your rear end as I'm not sure how you would combat swelling there. I would avoide systemic pain remedies for that localized tendon stuff, though. I've certainly been guilty of taking pain meds, forgetting my limits then re-injuring my elbows a time or two.
Keep up the (gentle) exercise as best you can and get some solid rheumy advice on coping with the recurring enthesitis. He may not have a panacea but describing your symptoms and the limitations they put on your daily living can give you and your rheumy a good baseline for what the worst looks like. Good luck!
YES! I have exactly the pain you describe and it's crazy-making. I am currently on 15 mg of MTX a week, 7.5 mg of prednisone a day and taking hydrocodone 3x a day and getting ready for my third injection of Stelara and I am still in terrible pain. I am working 3 days a week and when I'm not working, I am on my heating pad in my jammies. I am sorry anyone has to deal with this.
My glutes and IT bands and achilles tendons are screaming all the time. I need a knee replacement, but the tendon pain is worse than the joint pain in my experience.
Well, after I finally got a call back from my rheumy's nurse (around 28 hours after I left a message), the advice was to take prednisone. I have done the prednisone thing and it makes me INSANE..BAD reaction, so she told me to take IB 3x daily. I sighed deeply, and voiced the reply I just knew I was going to make, "Never mind, I knew you guys could not help me, I'll see you in about two weeks for my scheduled infusion"...SO, in about 20 minutes I received a call from someone at the infusion center. My insurance had approved an increased dose of Remicade an approved my coming in a week early for my infusion.
I had my infusion yesterday, and lo and behold I feel a bit better today.I'm hoping that within a few days (usually takes a few days to kick in completely for me) I'll be back to my raucous, annoyingly happy and energetic self.
We shall see. I am fortunate that I only work about 30 hours per week. I can't imagine doing more hours right now with how physical my job is. My husband wishes I worked more, but nobody really knows the toll this disease takes on the body, mind and spirit. Having some extra time to sleep or rest really can make a difference. Am I right?
I too have the same issues and pain that you all describe. I can’t add anything new to the discussion, but I can say it hurts so bad I can’t stand it or find any relief!!