HI all, it's been awhile....so, I just had my 12th Enbrel shot...so it's 3 months..my swelling has remained about 80% less than it was ever since I stopped the prednisone a month ago...I still have the deep bone pain, but not the "broken" finger/toe thing...so I was thinkin maybe it is working...but yesterday I was so sleepy allllllll day and today I'm pretty puffy and sore, it's because it's cold and cloudy out I think...so, my question is: how are we supposed to know if it works? does "working" mean the swelling is down and there is no pain? Or less swelling and some pain? I can't recall my doctor telling me what to expect if it "works"...Anybody know what I should expect?
Thanks so much! OHHH, I got a job!! I've had more energy, so that's really good...Kim
The only thing that works quick magic is pred.
I say the meds are working when there is less stiffness, and pain, and fatigue. I am not usually hugely swollen, but swelling still goes down a little. I find I want to do more things. I can do those things longer periods of time. I don't have to 'pay' for being more active.
It usually is very gradual - look back over time. Do you feel better than you did?
I always notice I'm getting sicker quickly. It harder to say - I'm feeling better, if you are still hurting some.
I think it's a tough call for many people. I've been taking Enbrel and kept telling the doctor that it wasn't doing me any good. He didn't believe me or listen until more joint damage occurred and my SED rate went back up. And, my ability to work went away.
Then, he said to try going off of it and see how I do. I tried that. But I've been in so much pain, I added it back in out of desperation. Only I don't feel any better or any different.
For the people that it does work for, they do seem to notice a difference. Others say that it seems to work for awhile and then wears off. It is not uncommon for people to have to switch from one biologic to another.
From what you say, it sounds like it is working fairly well for you. On cloudy days, you are going to probably hurt more. The weather can really affect you.
What you might want to ask you doctor is whether your other medicines might be increased some. For instance, increasing your MTX slightly might make a big difference, or adding Plaquenil.
It's easier for me to determine what does not work. If I am not feeling better, then it isn't working, pure and simple. Makes it a much easier decision for me. The old yes or no method. Well, there you go...today all my good work is gone....I had to come home a little early from work and take a lonnnnnnnng nap...but, at least I went to work...I think I agree, I notice a bit of difference..so, it's working "a bit"...that's how I'll measure it too...in black and white...I wonder though, if it "works" will that make the pain stop? Is that what we're hoping to acheive? Does that happen? or is it an urban myth? ha...Everyone is different - but to me there is a lot more gray than there is black and white. John Hopkins has a good site to help explain the biologics. My reading of the info is that 30% of patients have optimal response, meaning that the RA is slowed down significantly. That leaves 70% with a sub-optimal response, with 10% falling off each year. Somehow I think that your response to the meds is partially a response to how aggressive a form of RA you have. Best wishes. I base on how meds work according to my flares. After starting the Humira my flares were fewer and farther between and less severe. I am more active now with less of a price to pay afterwards. I don't think any of us are going to be flare or pain free til they find a cure. Best we can hope for with meds is less flares and less severity of the flares. I am unalbe to do pred when my flares get out of control (I caught a viral syndrome and meningitis at the same time when on pred and doc will no longer prescribe it for me) so I just catch some extra rest, warm baths, and know my limit on activity.I agree. I don't think being pain free is necessarily the only sign that the medications are working. Usually I can tell mine are working when I get all feisty and stop taking them ;) If you are having fewer flares and feeling better to a decent degree, then it's probably working. I'm not pain free - but I'm pain less. I used to have maybe 3 good days in a month. Now, I have about three bad ones. To me, that means it's working. I'd rather not take more drugs to get it to zero pain; I can live like this.