Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 Hi folks, I've been taking Enbrel for 3 weeks now, and am beginning to see a pattern. I take my shot, and start feeling better the next day, then I have about 3 days of feeling pretty darned good before sliding back down hill again. Yeterday I felt close to my " old self " . Today I woke up with joints in my hands and feet painful and swollen, and stiff all over. The over-all stiffness is starting to wear off now that I've been up for a couple of hours, but my hands are still very uncomfortable, particularly the knuckle of my middle fingers. Earlier this week, I was feeling good enough that I was thinking of calling the doc and asking her if it was time to start trying to wean down off the prednisone again. Today, there's no way I'd want to do that, and I'm really wishing my liver would stop acting up so that I could at least take my Voltaren. (she took me off that when my liver values didn't return to normal, even after stopping the Arava) I've got both Ultram and Percocet I could take, but then, even if I were in less pain, I'd be pretty useless for the rest of the day. Is it common for the Enbrel to sort of " wear off " before it's time for another shot? Is this likely to get better when I've ben on it longer? I love how good I feel for the first few days, but I was really hoping not to fall apart mid-week again each week! Boy do I hate this roller-coaster ride!!! Can I get off now!?!<g> Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 --- In , " Randall " <krandall@...> wrote: > > Hi folks, I've been taking Enbrel for 3 weeks now, and am beginning > to see a pattern. I > > > Hi I am on Enbrel and I too see a pattern My shot is due tomorrow friday, and yesterday my hand started to hurt a little and today I hurt all over just feel not my self and after the shot I am doing good, so you are not alone, Janet IN IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 Hi Jan, Thanks for responding. How long have you been on Enbrel? My doc has said it could still be a while before I see the full benefits of it, (having only had 3 shots so far) but I sure _hope_ that it can keep me going for a full week after it has fully kicked in! > > > > Hi folks, I've been taking Enbrel for 3 weeks now, and am beginning > > to see a pattern. I > > > > > > Hi I am on Enbrel and I too see a pattern My shot is due > tomorrow friday, and yesterday my hand started to hurt a little and > today I hurt all over just feel not my self and after the shot I am > doing good, so you are not alone, > Janet IN IL > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 , I found that the once-weekly 50 mg Enbrel wore off for me before the week was out. That's why I went back to the 25 mg after one month on the other. If I remember correctly, you are on the 50 mg, aren't you? It might be worthwhile to try the 25 mg. You have to mix it, but that's no problem at all once you get the hang of it. Sue On Thursday, July 27, 2006, at 08:06 AM, Randall wrote: > > Is it common for the Enbrel to sort of " wear off " before it's time > for another shot? Is this likely to get better when I've ben on it > longer? I love how good I feel for the first few days, but I was > really hoping not to fall apart mid-week again each week! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 Hi Sue, Yes, I'm on the 50 mg/weekly. I've got one more shot in the current box, and then I've got an appointment with the rheumatologist next week. I'll ask her whether she thinks it's worth giving the 25/twice a week type a try. So the 25/twice a week type really does lsat through the whole week? It doesn't " wear off " even sooner because of the smaller dose? > > > > Is it common for the Enbrel to sort of " wear off " before it's time > > for another shot? Is this likely to get better when I've ben on it > > longer? I love how good I feel for the first few days, but I was > > really hoping not to fall apart mid-week again each week! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 It doesn't wear off sooner for me, but of course we're all different. My former rheumy said that they had heard from other people that the 50 mg didn't last as well. Sue On Thursday, July 27, 2006, at 09:28 PM, Randall wrote: > Hi Sue, > > Yes, I'm on the 50 mg/weekly. I've got one more shot in the current > box, and then I've got an appointment with the rheumatologist next > week. I'll ask her whether she thinks it's worth giving the > 25/twice a week type a try. So the 25/twice a week type really does > lsat through the whole week? It doesn't " wear off " even sooner > because of the smaller dose? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 --- In , " Randall " <krandall@...> wrote: I have been on Enbrel 4 months now, I sure hope it works for you too, I just wonder If it might be the Fribo that is acting up and not the RA, it is so hard to tell any more, well good luck again I hope it works well for you , Dont get me wrong I feel alot better being on the Enbrel so It has worked for me,, Janet IN IL > > Hi Jan, > > How long have you been on Enbrel? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 : That is the way it has always gone for me - I know when it is time for my shot again by the way my joints begin to feel. Once you get the Enbrel more into your system, the good feelings should last a longer time right up to the day your shot is due, but you will always be able to tell that you are due soon. Are you really wiped out the day after your shot? I sure am. I am pretty sleepy most of the day, and fatigued, and those are the days I take more nap time than usual. I am glad, though, that you are beginning to see some light at the end of the tunnel, but I kind of think we ride the rollercoaster for the rest of our lives, maybe smoothing out at times, and then more ups and downs, but life with RA is never boring. I sure hope the Enbrel continues to help you for a long time to come - you have been through a lot since being dx with RA, and it was not all that long ago either. I am sorry to hear your liver enzymes remain elevated. keeping you from taking the med you want to take. Hopefully, use of the Enbrel will be able to keep you going through your horse show next month - wow, almost here! - and I know your heart will soar when you are riding Oliver, and going over those jumps, and it will all be worth it. Take your rice socks and heating pads, ice packs, your body pillow, and your comfy slippers, whatever will help to get you through from one event day to the next. Let us know right away when you get back how you did - I would love to be there to see you do it! You go, girl~ Kathe in CA --- In , " Randall " <krandall@...> wrote: > > Hi folks, I've been taking Enbrel for 3 weeks now, and am beginning > to see a pattern. I take my shot, and start feeling better the next > day, then I have about 3 days of feeling pretty darned good before > sliding back down hill again. Yeterday I felt close to my " old > self " . Today I woke up with joints in my hands and feet painful and > swollen, and stiff all over. The over-all stiffness is starting to > wear off now that I've been up for a couple of hours, but my hands are still very uncomfortable, particularly the knuckle of my middle > fingers.> I've got both Ultram and Percocet I could take, but then, > even if I were in less pain, I'd be pretty useless for the rest of > the day. > > Is it common for the Enbrel to sort of " wear off " before it's time > for another shot? Is this likely to get better when I've ben on it > longer? I love how good I feel for the first few days, but I was > really hoping not to fall apart mid-week again each week! > > Boy do I hate this roller-coaster ride!!! Can I get off now!?!<g> > > Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 Hi Jan, I don't think I have Fibro... at least from the descriptions I've read here. My pain is confined to my joints, and I get the typical RA swelling and redness along with the pain. There is less swelling and readness when I'm on a fair amount of prednisone, as I still am now, but still, the pain is confined to my joints. I guess thank heavens for small favors.<g> The doc did mention Fibro to me, though. She said that sometimes Fibro is the body's way of reacting to the constant pain of RA... the nerves get in the " habit " of sending pain responses. She sounded like that was another reason (as if there weren't enough already!!!<g>) to get the RA, itself, under control. > > I have been on Enbrel 4 months now, I sure hope it works for you > too, I just wonder If it might be the Fribo that is acting up and not > the RA, it is so hard to tell any more, well good luck again I hope it > works well for you , Dont get me wrong I feel alot better being on the > Enbrel so It has worked for me,, > Janet IN IL > > > > Hi Jan, > > > > How long have you been on Enbrel? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 Hi Kathe, If the shots would last until the day of my next shot, or even the day before, I could live with that!!!<g> The Enbrel hasn't made me tired at all... if anything, it has somewhat counteracted the fatigue caused by the Mtx. I still need to take a nap many days, but I think that's still the RA more than the meds. It has gotten better since starting the Enbrel, not worse. I've been thinking of waiting an extra day to take my Enbrel, both this week and next, so that the " good days " coincide better with the horse show... Right now, we'll be arriving at the show just when I start to go down hill again. The other part of me, though, doesn't want to dela the shots at all, and get those meds into my body and working ASAP!!! Even when my liver enzymes return to normal, I don't think she'll take a chance on putting me back on Arava. Unlike Mtx, where the liver problems, if there are any, show up slowly, and can easily be reversed if you are staying on top of your blood work, my understanding is that Arava has sometimes caused complete and irreversible liver failure in a very quick period of time. That is why she got so concerned and pulled me right off the Arava when my liver enzymes went so high, and kept rising, twice in a row. I hope that when my liver enzymes have returned to normal, it will mean that my liver is completely healed, and I'll be able to take NSAIDS again. It will be a real bummer if I'm always having to coddle my liver along too! I had my blood work done again yesterday, and it seems that they've taken blood so many times in the last 6 months that they've killed the vein in my right arm. For the second time in a row, they've dug around in my arm till I wa jumping, left me with a big bruise, and have been unable to get any blood out of that arm. Now they put a note in my file not to use that arm, and to use a smaller gauge needle on the other arm. What happens if they start having trouble getting blood out of both arms? I've only had RA for 7 months, and this is already a problem... is it likely to get worse? Or is it just because I've needed so many so close together because of the liver problem? (I've needed blood drawn every 2 weeks for the last 3 months) The good news about the way the horse show is scheduled is that the classes I would be riding in are either in the morning or the evening. So I'll be riding when it's cooler, _and_ I have the whole middle of the day to retreat to the air conditioning in the trailer and rest. I think we've covered as many bases as possible, and I'm really looking forward to it!!! > > > > Hi folks, I've been taking Enbrel for 3 weeks now, and am beginning > > to see a pattern. I take my shot, and start feeling better the > next > day, then I have about 3 days of feeling pretty darned good > before > sliding back down hill again. Yeterday I felt close to > my " old > self " . Today I woke up with joints in my hands and feet > painful and > swollen, and stiff all over. The over-all stiffness is > starting to > wear off now that I've been up for a couple of hours, > but my hands are still very uncomfortable, particularly the knuckle > of my middle > fingers.> I've got both Ultram and Percocet I could > take, but then, > even if I were in less pain, I'd be pretty useless > for the rest of > the day. > > > > Is it common for the Enbrel to sort of " wear off " before it's time > > for another shot? Is this likely to get better when I've ben on it > > longer? I love how good I feel for the first few days, but I was > > really hoping not to fall apart mid-week again each week! > > > > Boy do I hate this roller-coaster ride!!! Can I get off now!?! <g> > > > > Thanks, > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 Well, this theory makes sense to me. I had wondered if that could sometimes cause fibro. Anyway, I'm glad that my RA was treated aggressively from the start so that my nerves didn't get into that habit. Sue On Saturday, July 29, 2006, at 06:42 AM, Randall wrote: > The doc did mention Fibro to me, though. She said that sometimes > Fibro is the body's way of reacting to the constant pain of RA... > the nerves get in the " habit " of sending pain responses. She > sounded like that was another reason (as if there weren't enough > already!!!<g>) to get the RA, itself, under control. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2006 Report Share Posted July 30, 2006 Hi : Actually, I think the 25 mg. twice a week is better because it keeps the medication in your system on a more consistent basis, rather than just once a week. With the two shots, I think the med has a better chance of staying pretty level. It's definately something you should consider if the once a week shot is not doing the job for you. Kathe in CA --- Randall <krandall@...> wrote: > Hi Sue, > So the 25/twice a week > type really does > lsat through the whole week? It doesn't " wear off " > even sooner > because of the smaller dose? > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2006 Report Share Posted July 31, 2006 Thanks Kathe, I'll check with the doc about it. > > > Hi Sue, > > So the 25/twice a week > > type really does > > lsat through the whole week? It doesn't " wear off " > > even sooner > > because of the smaller dose? > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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