Oh boy, it’s been a while. The amount of drugs I have been tried on since last year is excessive, and I am back to Humira to see if it will bring back relief. It all started at the end of the summer, a bad flare, and my Rheum leaving. My old Rheum decided to try Stelara, and then Cimzia, then I started with my new Rheum while on Cimzia. Cimzia gave me an allergic reaction, so new Rheum starts Simponi. Then Otezla, then back to Humira. The whole time on prednisone and trying different anti inflammatory meds. My new Rheum seems very knowledgeable and attentive, but now 8 weeks on Humira and still feeling awful, she is at a loss as to where to go next. I am down, I am in pain, my skin looks great, but it’s a small achievement. She is afraid to try me on an IV treatment since I’ve had many reactions to a lot of the biologics. I need hope there is something more and something different that can help. Every morning I wake up thinking, please be able to get up today. My hips, ribs, and back have been getting worse and worse along with being so tired all the time and I have to peel myself out of bed in the morning. I am looking to see if anyone else is at the end of their treatment options, if anyone has any other opinions of what to try. Methotrexate is out of the question for now, since I am not 100% sure I want children. That is where it gets tough. Anyone else younger have this issue? Anyone been on this many failed treatments in 2 years time?
Also, I’m trying to get a job, but this has been extremely difficult when I never know how I’m going to feel in the morning, if I can get out of bed.
Hello iswhatitis
I haven’t had quite as many treatments as you but over the course of two and a half or three years I went through humara, sulfisalizene, Otezla for my arthiritis and a bunch of creams and gels for psoriasis. I had Remicade years before that. I ha to stop humara ad Otezla because of side effects, severe headaches from humara and nausea and dehydration from Otezla. Sulfisalizene didn’t do anything and I ran out of drug coverage and relief funding for Remicade, it worked well but it was three hours in the infusion clinic for me. I ended up with Cosentyx and its so far so good, no side effects so far, other than feeling a bit run down for a few days after my injections, so that might be one to ask your dr about.
I do know the hard to get out of bed and the back, ribs, hips feeling. The rib pain is new to me to only over the last few months and it is really unpleasant.
The best thing I have found is waking up a couple hours before you have to leave for work and walk around and stretch take a shower eat whatever kind of helps. Also taking your time is key don’t rush or force yourself to get up and go, I found that makes me hurt more. I know That is easier said than done, especially if your treatments aren’t working.
Gettig a job is a bit difficult when you are hobbling around in pain all the time, sadly a lot of the time it seems like it really isn’t worth the pain once the mental and emotional toll of psa kicks in, fear of the pain to come. I was lucky my work let me come back after almost a year off during my last flare up.
Have a good and as pain free of a day as possible
Michael.