Two years ago, my rheumatologist said that we’d get things under control and then try to cut down on my number of medications. At that time, I had six prescriptions. Great! I was really looking forward to both reducing my number of prescriptions and feeling better.
It hasn’t seemed to be working, though. Apparently my doctors are into new math, adding prescriptions here and there to tweak the treatment plan just a little bit. Sometimes cutting a med out temporarily, but adding it back when it’s obvious that discontinuing that particular medication was a bad idea. I always believe that the change will work and I’ll do better with the new treatment plan, and it’s highly disappointing when things fall through. This afternoon I saw both my podiatrist and my rheumatologist. Both of them wrote a new script, bring the number of my prescription medications to a grand total of twelve.
That’s the wrong direction!!!
Thus far I have tried to stay positive and make the best of things since my immune system decided that I’m the enemy instead of the one to be protected from the enemy. Positive just isn’t working right now. What happened to just mtx & enbrel???? That was the goal: two for RA plus one to prevent headaches. The goal was to get down to just three meds. We were supposed to DIVIDE by two, not multiply.
Apparently nobody wants to just say, “This might be as good as it gets.” I hate getting my hopes up that a treatment is going to work, only to discover that it doesn’t.
What I learned at my appointments today is that there’s a possibility that the latest TNF inhibitor isn’t working, and it’s only the prednisone that’s keeping me going right now. I’m not stupid. I can tell a difference between two days before my injections and a day after. Cimzia is helping. Just not enough. Yet.
I’m to taper the pred if possible, and stay on the Cimzia for six more weeks. At that point, my rheumatologist will re-evaluate and might switch me to a B-cell inhibitor. Every other time she has said, “maybe” or “we’ll think about this next time” there hasn’t been any maybe about it. It’s just a heads-up so I know what to expect next. I have to get off the prednisone. Cimzia has six weeks to kick it into gear and work – as well as Enbrel did when I first started it. Otherwise, I’ll have to come up with time (and money) to go in for infusions.
12 < 6
∞ itis 
Sheesh! I’m sorry to hear this! What did they add today – pain meds? I understand the need and desire to get off the pred, but if the others aren’t working well, or well enough yet, I don’t see the point in getting off of the prednisone just yet. You have to function afterall. If that’s all that’s keeping you going, I wouldn’t get off of it just yet, just go to lowest possible dose. But that is a very personal decision I do understand.
Podiatrist added a topical NSAID to see if that helps my feet. I’m not impressed with the sample he gave me, and the pharmacy told me I’ll have a $70 copay for it. That seems like a lot to pay for something that’s uncomfortable and doesn’t work. Rheum added gabapentin (which she first suggested a year and a half ago).
Rhem gave me instructions to taper the pred to 10, and phone if I’m doing well – they’ll then give me instructions to taper the rest of the way. No threats. However, if she thinks that the cimzia isn’t working for me, then I believe she’ll switch me to yet another biologic (she gave me info on it). I really feel that my best hope of avoiding the switch is to get off the prednisone. If it becomes apparent that the cimzia isn’t working at all and the prednisone is the only thing that’s helping, I’ll want to switch.
Oh how I understand. The blog post I was going to write later this morning would have been very similar to this. My doctor gave me the heads up on Tuesday. I’m sorry to hear we’re on the same kind of path. Much sympathy.
😦 I’m sorry to hear you’re going through this, too. We’ll make it, right? Hang in there.
Socks: You know best how you want to handle this situation, but this is where I would become a very active participant in my health care. I would explain to my rheumatologist that my choice of treatment was to return to the Enbrel/MTX combination that provided the best relief, pointing out that nothing has worked as well since, and remind the doctor of the goal of reducing medications. We patients have rights concerning our healthcare and one of them is to not be used as a test lab for multiple drugs when we find one that works for us. I feel your frustration. Good luck!
Thank you for the support, Carla.
The problem was that last fall it appeared the Enbrel wasn’t working as well as it had been and I developed significant spinal involvement. When I was up, moving around all day, things weren’t too bad. Laying in bed at night was extremely painful. My rheumatologist said that some people find Humira to be better for the spine, so that’s why she chose that as my second biologic. When I walked in to my f/u appointment after two months on H, and said, “I don’t like it; it doesn’t work,” changing was really the best option. I wanted to add hcq back in, since things went downhill after I discontinued it and I believed that the problem was there. The doctor didn’t agree that was the problem, but was willing to write a new rx for hcq. She didn’t think that returning to Enbrel was the best treatment choice. If she just fought with the insurance company to get Humira approved because the Enbrel quit working, it would be pretty hard to turn around and tell them that the Enbrel was working after all and we wanted to switch back.
I trust my rheum’s judgement; not just because of her credentials, but because she gives me plenty of information, I’m able to double-check what she’s told me, so I know she’s current on what’s the best treatment. Everything she’s said so far about my symptoms/treatment has proven to be right. I know I should be thankful that she’s still trying to get me more relief. Some people complain that when they describe symptoms to their doctor, they’re told, “You have RA; get used to it,” which I find appalling. I’d be livid if someone said that to me without trying everything possible first (I know, that’s the opposite of what I said in my post – I was pretty discouraged).
I’m hoping that I can stop the prednisone and function with what Cimzia will do for me. If not, I’ll want to talk with my doctor and find out if an infusion is really my only option, or if there’s another self-injectible that would be effective and not require me to put my kids in school and find a job (how the heck would I find an employer who would let me take a couple days off every month for doctor’s appointments?). You’re right, it’s highly frustrating. The Cimzia is definitely doing better than the Humira did (just for me; other people will have different experiences). I just want to give it a full chance to be as effective as possible. Thanks for the encouragement 🙂
I can’t say for you for sure Socks! I personally see, despite side effects, to see prednisone as somewhat of a life saver, even if it trades off anything down the road. I guess you must feel differently about it. I’d give it a while longer and a slower taper before going without it, and give the cimza a little longer. That’s just me and how can i even say since I’m not on a biologic. I’m also not a mom, so can’t say for you here either, but a choice between taking prednisone or going to work and giving up your lifestyle for yourself and kids just so you can afford to try a different medicine that ?might? work better than cimza or cimza/prednisone? I’d take the prednisone in that case.
“and not require me to put my kids in school and find a job (how the heck would I find an employer who would let me take a couple days off every month for doctor’s appointments?). You’re right, it’s highly frustrating. The Cimzia is definitely doing better than the Humira did”
” I really feel that my best hope of avoiding the switch is to get off the prednisone. If it becomes apparent that the cimzia isn’t working at all and the prednisone is the only thing that’s helping, I’ll want to switch.”
Yeah, i guess you do have to trust your doc on this one.
You raise some good points. Thanks. Prednisone would be preferable to a complete change of lifestyle. We’ll see how it goes.
You’re in a difficult spot and hard to say what is the best direction to turn for sure.
Did you go back on ssz?
What are you specifics in terms of your spine and feet pain?
Maybe you should find a specialist shoe store to work with your feet, it’s not cheap and very time consuming to get things customized for forefoot problems but might be worth it there. Still cheaper than chaning lifestyle.
Perhaps you could try adding a different biologic to the cimza. I just saw an abstract about a case study of a patient using 2 biologics. Will have to see if I can find it. Could consider adding Kineret maybe. Adding Arava or Immuran. Just shooting off some thoughts there. I’d still be worried about infections there.
I saw your other post on the prednisone withdrawal symptoms. Too tired to write as much as I thought of there but will say that you might consider getting some 1 mg pills and doing the alternating taper in smaller increments. Get a really good pill cutter and you can make it by 1/2 mg increments.
Did you and/or doc have a specific reason for the twice per day dosing instead of just AM dosing, and alternating day taper instead of steady taper down?
PS – I know your goal was to reduce meds, but it sounds like your body is disagreeing with that goal.
I’m actually using those round, facial cotton pads between some of my toes right now. It is helping with one toe that is starting to hammer at one joint and turn at the end joint. It’s started rubbing on the toe next to it and the cotton pad helps greatly there. Not helping my big toe cyst problem as that one doesn’t stay in place as well.
Oh, yes, I went back on the ssz promptly after only 5-6 weeks off it. The difference was astonishing. I’ll be taking ssz until I die or they find a cure, whichever comes first. I have custom orthotics and special shoes, and those have helped, too. Definitely expensive, but then I like being able to walk 😉 I saw the podiatrist last week, and he had some ideas of new things to try, so we’ll see how that goes. I need to know more before I can write about it.
The prednisone is really easy to cut, and I have a good pill cutter. Based on how I feel this morning, I think I’ll do okay at 12.5mg. I’ll stay here for a week or so before trying to drop to 10. It’s good to know that 1mg reductions are an option; last night I was wondering if it would work to quarter my pills 🙂
When I first started the prednisone, my doctor suggested 10mg in the morning and 10mg in the evening, then 10am/5pm, then 10am/0pm. That didn’t work out, and when I went back up to 15, it didn’t occur to me to take all 15 in the morning; last week my doctor did say that I could do that, but since (with luck) it’ll only be a few weeks, and I’m already taking a handful of pills in the evening, it doesn’t seem worth it to mess with the timing.
My doctor started to have me do a straight-down taper, but changed her mind and wrote out instructions for alternating-days. I assume she had a reason for the switch, but didn’t ask what it was.
Cotton pads between the toes sounds like a good trick to know about. Good luck!
A very helpful post. You reflect the best possible attitude of optimism peppered with awareness of various future possibilities. It reminds me of time line therapy in my NLP (neurolinguistic programming) training: Use the imagination to imagineer one’s way to the desirable future (to the extent possible). The body, though, has the biggest vote as to what the reality is. The mind finds ways to help the brain deal with the reality. The heart will integrate the mind/brain input and filter as needed. You’re using all your resources to effect the best possible outcome. I always like the Easter Factor as a wild card effect at this time of year, too. Blog On! Dr S
“the Easter Factor”
I like that. Thank you for a very important reminder 🙂