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Medical Forum / Diseases and Disorders / Arthritis / December 2005question about enbrel
Hi I have not posted for awhile, I have been on enbrel now for 4 months going into my 5th. The first 2 shots I thought it was great, now I am no so sure. I think I am probably not as stiff maybe a little more energy hard to tell, but my elbows, knees, and hips are worse, how does one know if it is working, I see those commercials, should I be back to where I use to be, able to exercise, feeling great? I see he doctor on the 23rd of this month, he always ask to you think it is working, gee I don't know, my hips and knees hurt more than when I was on it, but maybe they would be worse if I wasn't hard to say, could be my shoes and the orthodcis that still aren't right, but that wouldn't make my shoulder hurt/ Who knows would like others opinions . Thanks Becky Oh Becky, I know exactly how you are feeling, at least as far as reacting to those friggin commercials. I have been on Enbrel for about a year and a half. It definitely has helped with the fatigue, but I'm certainly not running around whilst washing my car, nor am I running through fields of green. Maybe I am shortchanging Enbrel a bit, because perhaps it has somehow stopped the progression of the disease, but it in no way has stopped the pain. Of course, I have been on it a year and a half now, so I can't say how I would be if I hadn't been on it. It's just that those damn commercials raised my expectations and the reality of the situation is not living up to them. I still have flares, I still have pain everyday (some days worse than others) and that was exactly how I was before. When I see my rheumy and ask him about perhaps switching to one of the other tnf inhibitors, he seems to think that I am expecting too much maybe, and gives me the impression that I should be happy with how things are going. Again, maybe my expectations are too high, maybe I shouldn't be shooting for no pain, and just be happy that I'm not crippled or fused anywhere yet. I don't know. I would also like the opinions of others. I guess this wasn't much help Becky, and I'm sorry if I sort of hijacked your thread. It just seems that your post resonated deeply within me and all of this just came out, Charlene Beckky, you should definitely be feeling much better if the enbrel is working well. I'm not saying feeling as good as the commercials spin. But if you think of your daily life, you should be able to say: "I have many more good days with the Enbrel than I did without" and "I have less pain in general". It may be that you're flaring, hence the increase in pain. If that's the case, then Enbrel is not doing its job as completely as it should. And maybe it's time to looking into changing your cocktail (adding mtx if you haven't, changing to another TNF-inhib.). When I went on the Enbrel, I really felt it helped me gain better control of the arthritis. I wasn't back to my old self - then again, I had been living with arthritis for about 18 years at that point. I had no idea of what to expect my old self to feel like! LOL. Seriously, though - I found myself with more energy and able to go to the gym, workout, walk the malls, etc. My old RD was of the mindset that due to past damage, I probably wouldn't find much more relief with other tnf-inhibs. We added mtx to see if that might boost my system. But it didn't do that much. I felt pretty good at where I was - content. Forward about 3 years and a move to a new location, meaning a new RD. This one won't settle for "pretty good" She feels there's no reason to settle with other drugs to try. I was hesitant at first, feeling that my life was good enough - why mess with it. But I have since switched to humira and glad I did. It definitely has improved my life. No huge leaps and bounds, but enough to notice I was settling with the enbrel. The RD thinks I should keep experimenting - remicade this time. But that's a big jump for me with the infusion and all. I'm not sure about it yet. I guess what I'm saying is - if you really feel it's not doing what you think it should, try a different med. And do't let the RD talk you into thinking they're all the same (that you'll react the same way). My old RD felt that way and he was wrong in my case. It may be the prevailing research. But for individual patients, there's always going to be different reactions and you just don't know until you try. BTW, I'm now on 1x/wk of Humira, where the usual dose is 1time every 2 wks. So I'm on a double dose. I wouldn't have been able to do that with enbrel. RD says that with remicade, we have even more flexibility... alison >Beckky, you should definitely be feeling much better if the enbrel is >working well. I'm not saying feeling as good as the commercials spin. But if [quoted text clipped - 32 lines] > >alison Is the double dose of Humira working for you? I've been on double dose for 4-5 weeks and I don't seem to be progressing as I should. I used Enbrel for 2-3 years and it stopped working. Humira never quite worked as well as Enbrel for the first 8 months but it worked. Then I had to stop taking it because of an infection for 6 weeks. After resuming it I haven't really come back from the no dose stage. My hands are really giving me fits and they were generally ok on other meds. I'll see my RD in a couple of more weeks and see what else he's got in his magic bag. Thumper Thumper, the increased dose of Humira has helped me in comparison to the every other week. I noticed a difference within two weeks. I'm happy with it. The RD seems to be ok with it but I think she really wants to try me on the remicade to see if we can get rid of all the swelling. I only have a little bit now. And as for pain, it's mostly due to past damage. Only minor morning stiffness and pain. So I don't complain. I know it could be much worse. I know what you mean about it just not working. The enbrel did that when I restarted it after a preg. It just didn't work the same. The RD said the TNF inhibs. don't work that way (most of the DMARDS aren't as effective the second time around but supposedly the new line drugs don't have that drawback) but it definitely was the case with me. I added mtx and that helped a bit. I hope you find relief soon.... >>>Is the double dose of Humira working for you? I've been on double dose for 4-5 weeks and I don't seem to be progressing as I should. I used Enbrel for 2-3 years and it stopped working. Humira never quite worked as well as Enbrel for the first 8 months but it worked. Then I had to stop taking it because of an infection for 6 weeks. After resuming it I haven't really come back from the no dose stage. My hands are really giving me fits and they were generally ok on other meds. I'll see my RD in a couple of more weeks and see what else he's got in his magic bag.<<< Since you're all talking about meds and RA in this thread, I want to add that I believe I had RA even before it showed in my blood as a positive factor. When I had my TKR in 2000, I remember well my surgeon coming to my bedside after surgery and asking if I have RA. I told him that up to that point, my diagnosis was OA, with inflammation. He went on to say that there was way too much inflammation in the knee area when he opened it, and his bet was that I had RA. He said to come back home and go through the blood tests again. I did, but the doctor back here brushed it off. I have since switched to a different Rheumy, and it finally showed up in one of my blood tests in the last year, so I'm currently taking Plaquenil and MTX. Here's what really frustrates me, though. I see Thumper has RA, too, as well as Fibromyalgia, so she will identify with what I'm about to say. I have so much overall pain (muscle and joints) that it is hard to identify the source: RA/joints, or FM/muscles, or both, working against me. I had read in one of Devin's books that Fibro can be even more painful than RA. I know most of you can identify with my saying that I wouldn't even know what it means to be pain-free :-( Nanny > Thumper, the increased dose of Humira has helped me in comparison to the > every other week. I noticed a difference within two weeks. I'm happy with [quoted text clipped - 18 lines] > meds. I'll see my RD in a couple of more weeks and see what else he's > got in his magic bag.<<< Nanny, I don't have fibro, but I can certainly relate to the pain and to not having a dx. My very first RD (at age 15) put me off for several years telling me it couldn't be JRA because my blood didn't show anything and I had very little swelling. Said it was just in my head - despite having a father with severe psoriatic arthritis at the time. My parents finally convinced him to get me on DMARDS and I got better almost immediately. But he still acted like I wasn't a truly arthritis patient. It really put me in a tailspin, always thinking that maybe in some way I was actually faking this - or imagining the pain. It wasn't until I had surgeries on my wrists and read the surgeons report unequivically stating RA due to what he found that I could finally be at peace with a diagnosis I KNEW was right from the beginning. Even after that, my new RD's often questioned me because I tend to have very little visible swelling. But inside the joints, the inflammation is present and causing true damage. Like I said, I don't have fibro but I do have quite a bit of soft tissue inflammation (bursitis, tendonitis, the rib cage inflammation for which I can't remember the name). And in the beginning, I often couldn't tell the doctor exactly what hurt. With time I have gotten better with it. But it still can be hard to determine it at times. alison Alison, why do today's doctors still do this? That is, determine that one does NOT have RA because it doesn't show positive with a blood test? Geesh! I don't have a lot of outward swelling, either, but a bunch of inflammation where you can't see it, as you. I know you are familiar with chronic pain - age 15 is quite young to "start the journey". Thank you for sharing. Nanny > Nanny, I don't have fibro, but I can certainly relate to the pain and to > not having a dx. My very first RD (at age 15) put me off for several [quoted text clipped - 18 lines] > > alison Nann, I think you've hit the nail on the head-negative blood test for RF and no swelling. Rather than believe us, they prefer to go by their almighty test. With AS, 70% of those afflicted never even have an elevated sed rate, and it's a disease thought to predominantly affect men. I went through hell trying to get diagnosed, and my 2.5 years is paltry compared to most woman with AS. Even after the erosions in my wrists and back showed up on the MRIs ( I mean erosions prove that there was inflammation, right??) , I was still being treated like I was a crazy woman-and for a while I thought I was. No elevated sed rate, blood tests look ok, etc... In this area, I truly do believe it's the fact that we are females-prone to having stress, whining, and turning molehills into mountains, blah blah blah. It really ticks me off, Char Drs. are like that because it is SO ingrained in them that tests don't lie. Maybe so, but they don't always show everything either. I actually didn't test positive for the rheumatoid factor until recently. Not sure exactly when. Tests in 2000 were still neg. I didn't have repeats until the new RD now in 2005. And this is the first time the rheum factor showed. So did ANA. BTW, just for the record, I've been dealing with arthritis since age 3. I had reactive arthritis from 3yrs to 8yrs. Whenever I'd get a kidney infection (several times a year), I'd end up with arthritis in the knees and hips. At 8 it remitted and then returned at 13. I did "OK" until 15, when it just turned pretty severe. So when I talk about having the JRA, I usually use that as a starting point, if that makes sense. alison >>>Alison, why do today's doctors still do this? That is, determine that >>>one does NOT have RA because it doesn't show positive with a blood test? Geesh! I don't have a lot of outward swelling, either, but a bunch of inflammation where you can't see it, as you. I know you are familiar with chronic pain - age 15 is quite young to "start the journey".<<< >Drs. are like that because it is SO ingrained in them that tests don't lie. >Maybe so, but they don't always show everything either. I actually didn't [quoted text clipped - 16 lines] >where you can't see it, as you. I know you are familiar with chronic pain - >age 15 is quite young to "start the journey".<<< I've got a good doc. I have never tested positive an all he said was that half of his patients don't but he knows RA when he sees it. What surprised me was my primary care doc who I really didn't like and had a horrible bedside manner, only took 2 weeks to decide to send me to a rheumatologist. He sent me home for a couple of weeks with moltrin and when I came back and reported no help he said"I think it's arthritis." I guess I've been lucky. Thumper > I've got a good doc. I have never tested positive an all he said was > that half of his patients don't but he knows RA when he sees it. What [quoted text clipped - 4 lines] > arthritis." I guess I've been lucky. > Thumper Yes,,, you are. It took my family doctor 5-6 years. Harv >Since you're all talking about meds and RA in this thread, I want to add >that I believe I had RA even before it showed in my blood as a positive [quoted text clipped - 36 lines] >> meds. I'll see my RD in a couple of more weeks and see what else he's >> got in his magic bag.<<< I don't have Fibro, only RA. THis week after my 5th consecutive week of Humira, I seem to be coming around a bit. I still hurt all over but not as much and my hands, although still swollen and sore are better. I have been icing them regularly throughout the day and especially at night before bed. Maybe I've turned the corner for awhile. Thumper Just curious, Thumper. Were you mis-diagnosed at one time with FM? I only ask that because you were so active on that newsgroup. Nanny >>Since you're all talking about meds and RA in this thread, I want to add >>that I believe I had RA even before it showed in my blood as a positive [quoted text clipped - 57 lines] > awhile. > Thumper >Just curious, Thumper. Were you mis-diagnosed at one time with FM? I only >ask that because you were so active on that newsgroup. Nanny >"Thumper" <jaylsmith@comcast.net> wrote in message No. Perhaps it was another Thumper. I was more active here but went away and only lurked for the better part of last year. Thumper >news:a920q159jlc5jnfsoe4cq5leuc5g8huu4s@4ax.com... >> [quoted text clipped - 59 lines] >> awhile. >> Thumper Oh my goodness, I just assumed there was ONLY one Thumper ;-) The Thumper we knew over on AMF had a husband who is a nurse and they were in the military. Nanny >>Just curious, Thumper. Were you mis-diagnosed at one time with FM? I >>only [quoted text clipped - 78 lines] >>> awhile. >>> Thumper >Oh my goodness, I just assumed there was ONLY one Thumper ;-) The Thumper >we knew over on AMF had a husband who is a nurse and they were in the >military. Nanny You do know that Thumper the bunny wasn't a female don't you? Thumper >>>Just curious, Thumper. Were you mis-diagnosed at one time with FM? I >>>only [quoted text clipped - 78 lines] >>>> awhile. >>>> Thumper Okay, I'm beginning to catch on: You're NOT the AMF Thumper, and yes Bambi's friend Thumper was a boy, and you're probably telling me you are male as well. How did I do? ;-) Nanny >>Oh my goodness, I just assumed there was ONLY one Thumper ;-) The Thumper >>we knew over on AMF had a husband who is a nurse and they were in the [quoted text clipped - 98 lines] >>>>> awhile. >>>>> Thumper >Okay, I'm beginning to catch on: You're NOT the AMF Thumper, and yes >Bambi's friend Thumper was a boy, and you're probably telling me you are >male as well. How did I do? ;-) Nanny\\\ Terrific! Thumper >>>Oh my goodness, I just assumed there was ONLY one Thumper ;-) The Thumper >>>we knew over on AMF had a husband who is a nurse and they were in the [quoted text clipped - 98 lines] >>>>>> awhile. >>>>>> Thumper > Hi > I have not posted for awhile, I have been on enbrel now for 4 months going [quoted text clipped - 5 lines] > month, he always ask to you think it is working, gee I don't know, my hips > and knees hurt more than when I was on it, And that is what you should tell your doctor and expect help with this....... IMO,,,, you need to find out if your hips and knees are so far gone that other procedures need to be done. but maybe they would be worse if I > wasn't hard to say, could be my shoes and the orthodcis that still aren't > right, but that wouldn't make my shoulder hurt/ Who knows would like > others opinions . > Thanks > Becky If you still have cartilage in your hips and knees, ask your doctor if he/she thinks you might do better on Humira or Remicade. Expect a specific answer and go with what the doctor thinks. No one here knows how far gone your joints are. Your doctor should know and the doctor needs to know what you think about the results with Enbrel. Are your hips and knees and shoulders too far gone for an anti-tnf drug to help? EXPECT an answer. If you do not get one, get another RD. Harv Thanks for all the information. I had an MRI on my shoulder, knees and hips, shoulder said bursitis and hips and knees said they looked fine, didn't even see any erosions, which is good. Will talk to my RD on the 23rd when I see him and hope for the best. I think that I was just excepting maybe to much, although before I went on it I was at he gym 4 days a week, now none but that is due to the hip and knee pain, so we will see what he says, I trust him and he is a good doc. Thanks again Becky >> Hi >> I have not posted for awhile, I have been on enbrel now for 4 months [quoted text clipped - 25 lines] > EXPECT an answer. If you do not get one, get another RD. > Harv Becky.... Since being on Enbrel has your lab works, if any done, inproved? Have your sed rats and CRP improved? Obviously, it isn't great that you aren't bouncing around but if there are signs of the disease slowing down due to Enbrel it may be worth discussing continuing treatment. I know with my xrays I am too far gone to allow any drug to show significant physical improvement. Shandi > Thanks for all the information. I had an MRI on my shoulder, knees and > hips, shoulder said bursitis and hips and knees said they looked fine, [quoted text clipped - 35 lines] >> EXPECT an answer. If you do not get one, get another RD. >> Harv My lab results have never really been bad. I have never had a high sed rate, or crp. My rheumatoid factor was really high and the new test anti-CCP was really high, that is probably way it took so much time for them to diagnose me, I was assured many years ago no way did I have RA, then after the erosions in my feet were visible on x-ray and the new anti-ccp came back high, and the ana titer or something like that was high then they said oh, it is RA you should be on MTX, which I am 17mg for about a year now and plaquenil for about 2 years and int he last 4months the enbrel, because of the fatigue and the pain I kept complaining about in my hips and wrists, the wrists probably are RA but not the hips, now they tell me today to see another physical therapist, I am trying massage but just want to have some energy, that seems to be gone again and the pain in the feet where the erosions are, I think that I have decided that I am truly stressed out and maybe that is making me have more pain, my family physician just said let me give you Zoloft and then you won't care you feel like crap, gee a nice doc, probably why I don't see him to much! Thanks to everyone that has responded. Wishing all of you a happy holiday season Becky > Becky.... > Since being on Enbrel has your lab works, if any done, inproved? Have [quoted text clipped - 45 lines] >>> EXPECT an answer. If you do not get one, get another RD. >>> Harv "but just want to have some energy, that seems to be gone again" Your Methetrexate could be causing you some fatique. I know it did me. There is a prescription called "FOLBEE TABLETS", that will sometimes help the fatique from Methetrexate. You might want to ask your RD about it. |
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