I am so discouraged. I started Enbrel in July. After about three weeks, I felt great. I continued to feel great for about 8-10 weeks. Then it all started going downhill. Everyday I feel worse and am back to the "before Enbrel" feeling. I was so encouraged... Don't see the doctor until December and here come the holidays.
Sandy
Meet you at the bottom of the hill, Sandy! Enbrel pretty much pooped out for me, and I'm on the downhill too. I'm waiting to start Humira, but the paperwork gods have yet to get their acts together. And like you say, everyday worse. But I take heart in the fact that if Enbrel helped me, there's a good chance that the next one will as well. Still, a discouraging time.
Hi Sandy!
I think that for some of us anyway, it's harder when something has worked and then stops working, or doesn't work so well, than it was in the earlier 'travelling hopefully' days. Our faith in the drugs and in our luck gets tested to the limits in that situation. And your great period was relatively short, that is tough ... it's not fair!
However the evidence we all see on this site again and again is that what works for one does not work for another and that trial and error does reap very definite rewards. But what a process. Is there any chance whatsoever that you can see your rheumatologist earlier? You've given Enbrel a good innings and given how very discouraging it is to have got so close to lasting improvement, you'd think your doctor might just understand your need to review treatment sooner rather than later.
Thanks for the reply Sybil. Unfortunately, just getting an appointment every three months is a challenge. I can always E-mail him but would rather talk in person. (Though he's not my favorite, he's all I have right now).
I'd be emailing then! As long as that doesn't take the place of the December appointment. What if you just update him to the effect that your initial good response to Enbrel hasn't lasted and then relay the hard supporting facts such as any new or continuing tender / swollen joints, raised inflammatory markers, increased fatigue, increased difficulty doing certain tasks etc.?
I know the US system is different and probably even more variable than it is here in the UK .... so maybe that just wouldn't work at all for some reason I'm not aware of. Or because you think he won't listen. What happened at the last appointment?
Sandy (hrlygrm) said:
Thanks for the reply Sybil. Unfortunately, just getting an appointment every three months is a challenge. I can always E-mail him but would rather talk in person. (Though he's not my favorite, he's all I have right now).
At the last appointment, I was feeling so great so the appointment was short. He is the only rheumatologist available to me and I just don't care for him. He doesn't listen and I think I know more about PSA than he does! This is my body so, of course, like most of us, I have researched this thing to the ends of the earth! And this forum is so great for facts! He is good to do what I ask but I feel like I should not have to be the doctor... he is! I do labs in the next couple of weeks before my appointment and it will be interesting to see what my inflammation markers show. I'll E-mail him then. Interestingly, with all this joint pain I'm having, my fingernails still look so so good and irritable bowel syndrome symptoms are so much better with the Enbrel. Truthfully, I'd probably rather have ugly fingernails and be able to participate in my daily activities better!
I'm glad Enbrel is helping in some ways. But nice nails would be pretty low on my priority list too.
I suppose there's always the possibility that you're having a flare at the moment ....? Sometimes pain and fatigue worsen for me for a while and as I understand it that doesn't mean that Humira's not working. However I've recently started to get a few swollen joints and I tend to think that is a sign that its effects may be fading. I'd hate to have to try to work these things out for myself. I hope that rheumy of yours gets his thinking cap on. Good luck and keep us posted.
Sandy (hrlygrm) said:
At the last appointment, I was feeling so great so the appointment was short. He is the only rheumatologist available to me and I just don't care for him. He doesn't listen and I think I know more about PSA than he does! This is my body so, of course, like most of us, I have researched this thing to the ends of the earth! And this forum is so great for facts! He is good to do what I ask but I feel like I should not have to be the doctor... he is! I do labs in the next couple of weeks before my appointment and it will be interesting to see what my inflammation markers show. I'll E-mail him then. Interestingly, with all this joint pain I'm having, my fingernails still look so so good and irritable bowel syndrome symptoms are so much better with the Enbrel. Truthfully, I'd probably rather have ugly fingernails and be able to participate in my daily activities better!