I've been on Enbrel for nearly 6 months. My RD and GP keep asking if the Enbrel is working. The sixty-four thousand dollar question - How do I really know? Since RA is progressive, how do I know how much faster or slower it would have gone if I hadn't taken the Enbrel. Its not like taking an antibiotic for strep throat and 24hrs later you're cured and you know it worked.
In many ways my hands are worse now than they were when I started Enbrel, but maybe they would have been much worse if I hadn't taken Enbrel. Plus, the symptoms of RA vary so much on a day-to-day basis, its hard to tell where the baseline is.
So just how does everyone tell? Is it by the xrays? Range of motion? Pain. Or is it all the above.
Just how do I know if the meds are really working? And when do you say they're not and that its time to try a different cocktail? God should give out a little RA recipe handbook along with the bad genes!
Oh please dont tell me you are still going around and around with that question after six months!!!! I have been on Enbrel for 3 weeks and I am asking myself that. The only thing I know is that the answer changes daily. You are scaring me now,'cause I was hoping to have a more definitive answer in the near future. It is time for me to go take my shots now....and I am not looking forward to it.
I think the best bet is to journal for a week and then summarize it. Compare that to an avg week before Enbrel. That would be your answer. There is nothing wrong with saying that it works most of the time, but you dont feel like you are in remission. I really think that is what we are supposed to expect out of Enbrel, more better days, not really a cure.
I don't feel like it's working for me. I felt a big difference on Remicade. My energy seems a bit better on the Enbrel, but that's it. Joints are still inflamed, damage is still occurring. I am not happy with the results. Certainly, no one around me is seeing a difference. In fact, I feel like I am generally declining.
I'm waiting for a call back from the doctor. Something needs to be better.
Oh yeah, Deanna, I agree with you. I dont think you are getting therapuetic results at all. I hope they do something for you soon.I got results after about 3 months on Enbrel. Had much less inflammation and moderate pain, all down from a lot of inflammation and severe pain. Had to go off Enbrel due to inf. and when I restarted it didn't work. I took it for another 3 months with no success. Am on Remicade now and have less symptoms one day and more the next. It's a real roller coaster right now and like you I'm not sure where I stand. I just know that I'm not in remission and that's what I want.Sorry, Crunchy - I didn’t want to come across so concerned. Its my understanding that responses to Enbrel vary greatly - from remission, to slowing the progression, to no response. Enbrel has helped me in many ways. Before Enbrel I often woke up at 2-3 am feeling like a truck ran over my body. I needed pain meds just to go back to sleep. I also had 6 cortisone shots in my shoulders during 12 months preceding Enbrel. Those issues have since disappeared. Its just that the RA has been growing noticeably worse in my hands.
I would say that systemically, the severity of pain and stiffness has decreased since the Enbrel, but the progression is still noticed. So my question remains: Does this mean that the Enbrel is working as best as can be expected for my symptoms or should I look at the other biologics.
I must say that of all the concerns I see from RA, the loss of hand dexterity and strenght will be the most painful on an emotional level. I love to play guitar. I wake up an hour early and often stay up after the family has fallen asleep, just to play music. Everyone has their escape hatch from life. Music is mine.
You know, i got blood work back and was told it was almost inflammation free and looking good yet my pain is just as bad as always which makes absolutely no sense to me.Maybe it's from the damage that is alreay there. Also, if you have FM, it doesn't show up in blood work. Your muscles could still be inflamed.
It's an awfully good question to ask the doctor. As sick as you've been, I'm really surprised at your blood results. Maybe you should call and ask that question, "then why do I still hurt so bad?"
I think that's legitimate.
Justoday~Have you tried taking Methotrexate in conjuction with your Enbrel? I take Humira and MTX together and I'm certain that MTX is doing all the heavy lifting. Humira is great; but without MTX I'm not sure it would make a lot of difference. The key is both together for me.
I've been on both for about a year and a half now and I know without a doubt it's working and working well. A month without either late last summer resolved any remaining questions I might have had. Once I was able to resume my meds it took more than another month to get me back up to speed; but I feel better now than I have in years.
Remission? No. I don't even use that word. I've had spells where I was really close but it was all medication induced. Without the meds I turn back into a statue really quick.
My doctor is quick to make changes in doses or medications all together if what were doing isn't working. I'd say 6 month is plenty of time to make some changes if you really don't think it's working for you.
Good Luck.
I'm on enbrel and have been for nearly a year. I take MTX with it. Recently I had to go off them both due to shingles. I restarted on enbrel alone and I'm feeling terrible. I don't know if it's because the enbrel is not working for me any more, or if the MTX is the real powerhouse. I thought the MTX was making me lethargic and achy but I'm experiencing that now off MTX. When you're on as many meds as we are, it's really hard to figure out what works and doesn't.Don't forget that it takes awhile for both of them to work. Why didn't you restart the MTX? They seem to be more effective together.I was on MTX for 3 months and in constant pain. I started Enbril in January and the results with the combo were amazing for me. I have led a 99% pain free life since January. Howeve, now I have to go off MTX because my liver can't seem to tolerate them both.
Just Enbril after next week. Not nuts about starting yet another rollercoaster of meds. Planquenil?? Sulfasalyzine?
My understanding of the literature is that Enbrel is much more effective when combined with MTX. I have tried both MTX and Arava, but both caused my liver enzymes to increase to over 5X my normal values and I had to stop the medications. Both meds caused almost immediate reactions from my liver and I was not able to stay on either long enough to feel their effects. GenaRogers, let me know how your experience works. Is Enbrel by itself as effective as Enbrel/MTX combined? I was on Enbrel and Arava for two months in 2004. Nothing happened except to cause me to have skin irratations. So off the enbrel I went. A coworker has had great results with Enbrel and had results within one month.Just today-when you describe your symptoms now, you sound exactly like me...and I have been wondering the same things. I am not as stiff upon awakening and not as fatigued, but the pain is still there. Am I still damaging my joints? I go in for my f/u exam in July and I am going to ask about getting some more x-rays just to see if there has been any progression. If not than I will be happy with what I have...otherwise, well, I dont know.
Crunchy - I hope the x-rays show that the progression has stopped or at least slowed to a trickle. We all know someone that had RA back when prednisone and aspirin were the only meds available - keeping that in mind, I appreciate the newer biologics, even though they may not be exactly what we want. I guess we have to pick our meds the best we can and then go forward. It seem there are few black and white answers. I don't believe its all about how I feel today, but how I'll feel in 10 years. For that, I am very thankful for my Enbrel.
That the same question they always ask. The answer it depends on the day. Some good some very bad. So how is anyone to know without comparison mri or x-ray to see if the damage has progressed. I think that would be the only way to tell. Other than what we could tell them. I think when it comes down to it everything matters. the fatigue, pain, inflammation and the comparison films. That is a good point of view---and I am grateful for the advancements in meds now. I have had symptoms for a long time, but they were mild. I didnt gradually get progressivly worse though, I got worse overnight. Maybe Enbrel will prevent that.Over the years my x-rays do show gradual errosions. My hands and back especially. I've been at this for more than 12 years now officially. My doctors and I both believe that had it not been for the DMARD treatments and now biologics my problems would be much worse by now. SO; although I do have some damage and some evidence that RA is eating away....it would have been much, much worse without treatment.
That evidence alone helps me see the need for these daily meds. We all get fed up with them and would like to stop them; but I know without a doubt that without them things would quickly get out of control. The meds have not stopped the progression.....but I have evidence it's slowing it. That's our goal I think. Right?