Hi all,
I’m brand new to the boards here but I wanted to ask from some experienced folks how to know if the meds are really working. I was diagnosed last May so I’m still relatively early in; but I’ve been on methotrexate the entire time and Humira was introduced in August. I’m unsure if the Humira is doing much for me these days as I’ve been having a lot of pain and also stiffness in my larger joints. It seems to help with my psoriasis but the rheumy is now also questioning its effectiveness.
Thanks,
F.
Hello FK25,
Another person who likes cats - there are several of us.
I’m sorry you’re part of this club though and so young as well. The good news is that you’re diagnosed and on meds.
How do you know the meds are working? You seriously just do. And obviously presently these ones aren’t working quite so well for you. And since you’ve been on both since August I would think your rheumy is right to question effectiveness. The better news is that there are others to try. I would get into discussions with your rheumy and see what else he or she suggests. I’m not yet on biologics but I knew when sulfasalazine started to work for me, it was like a switch just flipped after about a week of a higher dose. So you really just do know something is changing for the better when they’re working.
I’m sure others will now chime in who have more experience of biologics than me.
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If both you and your Rheumy are questioning their effectiveness, then the question is actually; they may be working to reduce joint damage (because some studies show they do - even in perceptual “non-responders”), but are they working enough - for you?
They mostly cost the same amount (or are similarly covered by insurance), and have similar risks, but non-responders to one, have almost as good a chance of response to a second, as totally naive patients. So if you are not getting an increased quality of life after a reasonable trial, why not switch?
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Thanks for the reply!
I am glad to know that you can just feel it working; it gives me hope that switching medications might be a success!
I appreciate the responses, I just have one other inquiry. What can I do to help with the pain until I do find something that works well? 
Often time you can get a run of prednisone during the “gap period”
Everyone has a different concept of whats working. A lot of us didn’t know how WELL something was working until we quit that medication and went to move on. I was idfferen (of COUSE i was different) I was sure there was no difference between spring water and Enbrel and considering I was paying full price out of Pocket for the Enbrel at the time (nearly 3K a month) I most definitley had expectations. I was ready to quit until morning My wife and I were dressing for work and she started crying. I asked he what the problem was and she said YOU JUST TIED YOUR SHOES. Little thing? Perhaps but it had been HER job for the last 3 year years. Once I realized how many little things I was now doing and started doing like walking to the mail box I realized how many things I wasn’t doing and didn’t even realize… Pain is a funny thing and a very undependable measure of anything. With arthritis it is pretty well accepted that whether you are in a lot of pain or a little pain, the pain is JUST ABOUT the same until you really evaluate not the pain but rather the effect of the pain.
IF you learn to describe your pain to your doc in those terms, you will get a lot more success and help from him. If you describe it in terms instead of my wrist hurts so much, I wanna cut my hand off, that has far less effect on him than When my wrist hurts like it does now I can’t cast upstream, I always could before. Everybody wants to cut off their hand fro time to time. If all you record is “pain” there is no way to know whether you really need to cut of your hand or cut off your arm and your doc has no clue what to do with you. Your “9” on the scale could well be my “3” but everybody needs to be able to flick a dry fly up stream.
Once your doc gets to know you (and it takes a few years sometimes) those numbers have meaning. In my case with both my docs I have no wait to get in (its noted on my chart even) If I call its an emergency and I’m seen right away. (actually his nurse calls and asks if I need a script to be called in, One to be picked up, or see the doc. My granddaughter on the other hand has a standing appointment every thurs. (with the nurse who checks the usual suspects)
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I’m in that stage right now. I’ve been on Enbrel for 4 years now. I’ve been thinking that it’s pooping out on me, and it’s not working as well as it once did. But I’ve been off it for a month due to a health concern, and am BEGGING to go back on. I’m finding out just how much it really has been doing for me.
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A couple times I’ve wondered if Enbrel was fizzling out on me, but all I have to do is think back to feeling like the Tin Man without his oil can and how sore my tendons were–especially being so painful to wring out a rag or turn over in bed at night, or get out of a chair. I have none of these problems anymore and haven’t had for 3-1/2 years on Enbrel now. Yes, there are other pains, but they’re so unlike the PsA inflammation pain that pretty much consumed my body–I often wonder how much of that I could take anymore. I know not as much as I took back then!
FK25, the fact that Humira is helping your psoriasis but not your pain–your rheumy is probably correct in questioning its effectiveness at this point. I would think if it’s helping your psoriasis it is doing what it can do for you. Enbrel helps my pain tremendously, but not so good my psoriasis…except, I am happy it cleared up the psoriasis on my scalp, which plagued me for nearly 40 years…it just doesn’t seem to do anything for the psoriasis on my elbows and legs.
I hope your rheumy suggests a switch to a different biologic! 
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I’m wondering what she will move me to next if she does so decide I need a change. I’m really glad to hear your scalp psoriasis was cleared up with the meds as that is what plagues me the most.
I’ve come far since last May but I think it has the most to do with the methotrexate.
Omg Grandma_J you made me laugh out loud - Tin Man ha ha ha!! That SO describes it!! I’ve not been on here for a while as I’m in a lot of pain and feeling low - now into the fourth week of ‘washing out’ methotrexate from my body before starting (hopefully) the clinical trial of two biologics next week. So I can fully endorse what you’re all saying about just knowing it’s working - even methotrexate on its own was keeping my pain levels down to ‘manageable’. Now I’m not on any meds and oh boy it HURTS!! Roll on the biologics!!