Last month I had to pause my Enbrel for a couple of weeks for a teensy infected cuticle. Oh, did I notice the difference. Groan, moan! If there was ever a doubt in my mind about what Enbrel was doing for me … LOL
I’m back on now, and the Enbrel’s kicking in again. Thank goodness. But I’m noticing that stiffness and aching is returning after about four days, and I’m really uncomfortable. I’m thinking of asking whether I could increase the frequency to every 5 days during the start up period. Is this a reasonable thing to ask for or am I going to get a flat “don’t do it”?
Has anybody here taken Enbrel more frequently than every 7 days? I don’t want to bother the good folks at the clinic if it’s a totally stupid idea.
At one time the normal protocol wa twice a week for the first rhree months as a loading dose. I'm not sure why they got away from it (cost?????) Perhaps in your case they disn't think it necessary on restart. Call. Mny of us (myself included) take it more often.
Thanks, Lamb. I thought I had heard about the loading doses somewhere. Will call if it’s not an unreasonable question.
As an aside, one of fabulously wonderful things that I’ve noticed about the Enbrel is an almost immediate reduction in anxiety, depression and an increase in energy. There’s research to suggest that there’s a connection between TNF-alpha and depression/anxiety. Interesting that I notice it so strongly.
Thanks again!
Hi Seenie. I am on Remicade. I recently had carpal tunnel surgery & had to stop the infusions for a few months. I too was miserable. Now that I am back on it, it does not seem to be lasting as long. I start to flare after 2 weeks. My rheumy has told me it may take me a few weeks to have it build back up in my body again. So I am guessing maybe it is the same for you. Hope you are feeling better soon :)
Thanks, Liz! That’s interesting.
How was the CT surgery? I found it very painful, but the pain dissipated pretty fast. It took six months to notice a positive effect, though! I thought the surgery had been unsuccessful, but then one day I realized the problem was solved! Hope yours is good. CT is so awful. I’ve wondered whether the PsA (swelling, etc) was the cause of mine. My other CT needs work too, but I don’t want to have it done until I have been on Enbrel longer, just in case it works for that.
Seenie
I think that embrel worked better then the remicade and I had no side effects when on the embrel but I was sick for 3 out of the 4 weeks on remicade. I to felt so much better even after the first shot of embrel, when I first started it I could feel the difference even with the first shot, I felt more alive and had more energy. I would talk to your dr. about going back on the loading dose for a few weeks, it never hurts to ask, and you should always communicate with the dr. about how you are feeling. Good luck and glad you are back on embrel and starting to get some relief. Right now I am without insurance and am hoping to get back on embrel and just knowing that there is a place to help pay for it puts a light at the end of the tunnel.
I had both done. Not at the same time, which is why I was off the remicade so long. My rheumy told me mine was because my wrists are fusing from the PsA. I had my right one done is April & the left was in May. I did not find it all that terrible. My left hand is still a little tender. But compared to the horrible pain I was waking up to this is nothing. I now am looking at needing another surgery. Cervical fusion! Not sure if I will go through with it though. Hope your enbrel kicks in real soon. Keep us posted. Sending hugs your way. (( ))
Seenie said:
Thanks, Liz! That's interesting. How was the CT surgery? I found it very painful, but the pain dissipated pretty fast. It took six months to notice a positive effect, though! I thought the surgery had been unsuccessful, but then one day I realized the problem was solved! Hope yours is good. CT is so awful. I've wondered whether the PsA (swelling, etc) was the cause of mine. My other CT needs work too, but I don't want to have it done until I have been on Enbrel longer, just in case it works for that. Seenie
I also really noticed the exhaustion, depression, brain fog suddenly lift with Enbrel - and think those studies are really onto something.
I also found I had patches of time whilst on Enbrel where it only seemed to last for 4 days. I persisted and it gave me full coverage again most of the time, but every now and again would only work for 3 or 4 days, usually for 2 or 3 weeks in a row. I put it down to underlying flares (as most of us don’t get 100% anyway).
If you can get it more frequently in this re-start period though, I would definitely ask - I did a couple of shorter periods between injections when I had a bad patch, and it made the world of difference
This is a very interesting chain of conversation. I have been curious about the same thing. I take my Enbrel on Monday and it seems by Friday I begin to run out of gas...The weekend gets foggier and fogger with fatigue continuing to increases. I seem to take longer naps on Saturday and Sunday. Monday is Enbrel day and the circle begins. I haven't figured out the key to get thru seven days with minimal pain and fatigue. I have to work so have to figure out a way to make it during the work week. I haven't thought of increasing the Enbrel or switching since I have more good days than not - not to mention the price. Open for suggestions too. Thanks for the discussion Seenie.
I think all the biologics seem to have similar issues. Humira would work for about a week, then my psoriasis would flare . The next shot would help a bit, but eventually everything would get out of control.
I think that embrel worked better then the remicade and I had no side effects when on the embrel but I was sick for 3 out of the 4 weeks on remicade. I to felt so much better even after the first shot of embrel, when I first started it I could feel the difference even with the first shot, I felt more alive and had more energy. I would talk to your dr. about going back on the loading dose for a few weeks, it never hurts to ask, and you should always communicate with the dr. about how you are feeling. Good luck and glad you are back on embrel and starting to get some relief. Right now I am without insurance and am hoping to get back on embrel and just knowing that there is a place to help pay for it puts a light at the end of the tunnel.
Hi Seenie, I was taking the once a week 50 mg autoshot, but suffering a terrible DRAG after a few days, my Rheum changed me to the 'mix it, build it' 25 mg shot twice a week, this seemed to even me out. I wanted a higher dose, he said higher was only for those who also had Psoriasis.
Hope this info helps! BTW, must have been a BAD infection, I continue Enbrel even if on antibiotics!
