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...
So I went this week to get my rheumatologist to change my biologic. My hands/wrists, feet/ankles were swollen like balloons. Although my big joints were fine.
I can barely use my hands, the pain is so bad. I'm getting ulnar drift in the middle finger on my left hand, that wasn't there a week ago. I knew he was going to be unresponsive like last time. Really, Cimzia has never worked well for my hands in the 4 years I've been taking it. I inject once weekly. The first day, my hands & feet feel so much better. By the next morning, the stiffness and pain have returned.
I only have 3 biologics left. So I asked him to go back to Kineret, and he called it names, and said no. I told him I understood it doesn't work for most people, but it worked for me-100% for 5 years, with mthx.
So, he told me he was going to send me to another rheumatologist for a second opinion. Told me I can leave him and find someone new. I realized I have been wanting that for a long time. I'm in a small town, it may be difficult to find a new rheumatologist, in a reasonable amount of time. But, he's not doing anything, so changing and having to wait is about the same.
I had 4 years of this in the beginning, massive flares, and 3 doctors turned me away for it not being RA, because I was was Sero-negative. I've never had a psycho-somatic illness in my life. I've had lots of people not believe me, esp. my parents, who didn't want to take time out of their busy schedule of golfing and making money to take me to a doctor. But in the end, I was always right, and the doctor would back me up, when they finally took me to see the doctor!
It's a strange place to be, With no rheumatologist. And painful!
My rheumy once told me that once you failed on a biologic you can never go back on it again. Not sure if that is a medical thing or insurance. CIMZIA is an NSAID, not a biologic! Have you been on Enbrel or Humira or Orenica? I am now on Rinvoq - ORAL bioolgic - and plaquinel.
My parents always thought I was a hypochondriac. Neither of them was ever sick a day in their lives and just had zero compassion or empathy. (Dad likely was a narcissist. Mom was an ice queen and a stepford wife.)
I sure hope you find a decent doctor. Worth traveling for since once you get on a decent treatment you only have you see them 4 times a year.
Long(ish) story. Maybe I'll try to share later.
With RA I know what works and what doesn't work. Telling me it is all in my head was the final straw!
WG Cimzia is a biologic. It is a needle taken every 2 weeks, but I have permission to take it every week. Not that it helps.
"The brand name of certolizumab pegol is Cimzia®. It is a biologic drug that is in a class of drugs called anti-TNFs or TNF blockers."
https://www.hopkinsarthritis.org/patient-corner/drug-information/certolizumab-cimzia/#:~:text=The%20brand%20name%20of%20certolizumab,anti%2DTNFs%20or%20TNF%20blockers.
Since I had this gap in my schedule after radiation, I decided to tackle a 35 yo rotator cuff injury and had surgery on Aug. 24. I have the best PT I've ever had, and since I've been considering another epidural in my neck, I've decided to get that done and follow it with PT with the same therapist.
If I can't get back on Rituxan, I've got a lot of work to do to find another rheumatologist. I haven't tried the dozens of meds many folks have, but I've read your stories. For me, no anti-TNF's, JAK inhibitors, il-6 inhibtors or Orencia, and Rituxan worked for 13 years, so please wish me luck.
You do sound a lot like my case. However, my case the doctor is giving me Cimzia weekly, when it is suppose to be every 2 weeks. It lasts one day. So, getting it weekly doesn't help much. He thinks it should. And things like my hips and shoulders are mostly good. Even the elbows I was flared for 2 days, and I couldn't do up the velcro strap on my carbon filtered mask, in a city/province where it is mandated.
I only have 3 meds left. I get that. But, I asked for Kineret, which was a daily needle that worked 100%. He said it is an "old" drug. So are Remicade and other drugs, but they still use them. I do understand that Kineret does not work for most people. But, it worked for me! That is what matters. (Maybe an Il-1 would work for you, BuddhaCat?) None of those other drugs did much for me. Kineret is literally the only drug that I was 100% for 5 years. BUT, it needs a DMARD. So, I am limited to a medium dose of mthx, and if my liver enzymes go up at all, then the Kineret won't work, because I will have to go off mthx. I am not unaware of the multitude of issues, for me. Even Rituxan didn't' work fully for me. I had constant wrist flares the 3 years I was on it. Plus, I could not get a 4 month protocol in Canada, and it failed after 4 1/2 months. If my approval got held up, it could be 8-9 months before the next infusion. Terrible insurance approval process. You had to prove to the Insurance nurses you were flaring, before they would approve the next set of infusions. So, the end of that one, for me.
Well, I will add you to my prayers, while I am at it for me! Not a big believer in luck, although random chance sometimes works. LOL
This puts me up a creek, too! I do NOT want to go back to the first rheumatologist. Ever! Now, I will be stuck taking a shot worth $750 for it to work 1 day a week, but not 100%. After just visiting Alberta, I won't go back there. I could get Kineret approved there. But I need special authorization in BC, which the rheumatologist will not give, because he doesn't believe in it.
Looks like our miracles are running out, Buddhacat!
I don't regret the hiatus from regular infusions, given what I was dealing with, and I can only be optimistic I get right again.
Good luck to you, Marlene.
My hands were so bad this week, I went back to Plaquenil the pain broke last night. I take it with an antihistamine, so no itching. Insomnia is the big issue, but at least I am sleeping without pain.
Maybe I won't have to change drugs, for a while longer!'