I take Enbrel 50mg injections once a week but I still need IBU 600mg and 1/2 50mg tramadol every 8 hours. I don't take the tramadol at night, I take amitriptyline. I must take these medications or my leg pain level is unbearable. I have done test days where I didn't take the ibu and tramadol but the pain still returned. I would like to wean off of them but it's not possible at this point. Does that mean the Enbrel isn't working? February will be one year on the medication. My rheumy doesn't seem concerned about the extra ibu and tramadol.
My hubs is a pharmacist and says the amount of ibu I am taking is well below the daily recommended dose. I also take Zantac to help with stomach acid problems associated with the ibu usage. Just as a precaution. I just think if I am taking this very strong immuno suppressant medication, shouldn't it help with everything? All pains and swelling? I am a stay at home mom but also homeschool my 5 year old son. I am very busy. Resting and sitting around just aren't always available to me. (I'm not looking for a home school discussion, it's our only option right now. )
The enbrel has helped with fatigue and most of my other joint problems. My knees and legs are the last strong hold. My knees also pop and crack at lot.
Thanks everyone who took time to read this. Not sure about my next move.
I have been on Enbrel for almost 2 years and leflunomide for longer. I am almost always taking an NSAID, and will try and give myself breaks once or twice a year. Right now I’m on my longest break ever, I think 4 weeks now. My rheumy is well aware that I continue to take an NSAID and just sees it as a part of my treatment plan.
I think pain is a vexed issue. My rheumy told me that pain levels vary considerably and that some people will genuinely be in agony with one inflamed finger joint whereas others, like me, don't get distressing pain very often. He then added that this has got nothing whatsoever to do with courage or stoicism, people's pain levels are just different. You know I just posted about getting electric shocks in my ankle all night ..... well that's a different matter for me. I cannot handle it at all. If I had that level of pain frequently I'd be on pain meds regularly and no mistake, otherwise I'd lose the plot. As it was I was a gibbering wreck for 24 hours.
I believe it's the case that pain, sadly, can continue even when the disease is pretty well controlled. I think so anyway, I'm ready to be corrected. But with the constant pain you describe I wonder whether some action is required, whether there is something you can do to at least investigate ways of bringing it down, such as a referral to a pain clinic. It'd be time consuming, it might not work etc. etc. but it could be a long term investment in your well-being. Might be worth asking your rheumy about this.
Thanks Sybil. My next appointment is in March and I plan to bring it up. I do think my pain levels are a bit high and possibly out of control. Even the injections hurt very much. Paper cut feel like agony. I have talked to Rhemy about a pain clinic or pain doctor and he didn't feel it was needed. I'll bring it up again. He doesn't think there is any knee joint damage. I did read an interesting articles about pain receptors. Something about the amount of pain receptors increasing the pain threshold. I'll try to find it.
I remember you posting about the pain of injecting. I think that's a good example to bring up with your rheumy if you haven't already. You pushed on through, it's not as if you created some big drama about it, it was just flipping painful.
amielynn38 said:
Thanks Sybil. My next appointment is in March and I plan to bring it up. I do think my pain levels are a bit high and possibly out of control. Even the injections hurt very much. Paper cut feel like agony. I have talked to Rhemy about a pain clinic or pain doctor and he didn't feel it was needed. I'll bring it up again. He doesn't think there is any knee joint damage. I did read an interesting articles about pain receptors. Something about the amount of pain receptors increasing the pain threshold. I'll try to find it.
I hope I didn't create a big drama :) Yes, it's still painful and he is aware. We have tried different locations and adding ice before/after. Still the same. I just endure it. The benefit is greater then the pain.
It's crazy-making trying to figure out if pain is from active disease causing inflammation and damage, or if it's from damage already done, or if it's from something else.
For me, the pain I experience is mostly from damage already done to my joints (when off meds), so even though my disease is fairly well under control, I have pain. I did have MRIs of, well, just about everything that confirms this. It sucks, but it's the hand I've been dealt, so I make the best of it. I do my best to listen to my body, rest when I need to rest, and let my five (homeschooled!) kids do the heavy lifting. :)
I wonder if some of the damage caused by PsA will be to our pain experience. As I understand it from a lay neuropsychology approach, when people experience ongoing persistent pain the pathways in the brain can be reinforced over time. This means not only is the experience of pain intensity different for each person to begin with but the chronic nature of pain that can be part of PsA for some of us can mean that the brain pathway that tells us we are in pain can become like a superhighway, reinforcing our pain intensity, registering the pain faster and faster ....it's probably evident I am not a scientist ...so i am struggling to explain this....which is pretty evident. Basically some doctors used to believe the more pain we expereince the less we feel pain but this is not supported now....many believe the opposite is true. I think this is very different to the horrible view that people are over sensitive....this is just a way to put people down. It's more that our receptors get overloaded.NSAIDs can give them a rest which could help. I am not sure what the answer is about how long to take them but sometimes they are very much my bestie. ...perhaps someone with science speak could help?????
PS i suspect it varies fir all of us though as others have already posted.
Macmac, your comment did make sense to me. Don't fret about your science skills. You did fine! My be true about the pain super highway. It does make sense. True, it has to be different for each person. Everyone I ask has a different story. I just wanted to put my mind at ease about the extra pain medications. It is what it is, right?
Nym, I remember you telling me about your home schooled kids. I thought you were crazy, sorry, but you are right. I do get more rest with the homeschooling. I am very happy with it. We had to home school out of necessity rather then choice, but I am loving it.
No need to apologize. You can't really understand it unless you live it. It is amazing how homeschooling can be less work. A friend told me I should put my kids in school and relax during the day. I told her it's not that easy.I'd spend more time on IEPs and homework help and getting kids to and from school than we do homeschooling each day. My kids are awesome independent learners and mostly need someone to facilitate their learning.
MacMac, that really makes sense. I think also when a person is dealing with crushing fatigue as one of the PsA symptoms it's so hard to deal with any kind of pain. That's when even a smaller degree of pain can put you right over the edge.
Sybil, I gotta tell you, I've had an assortment of back pain over the last 5 years, and the weirdest one was when I had a feeling of an electric shock going across my lower back. I'm scared of electric shocks anyway (terrible memories of accidentally touching the electric fence at my grandparents' farm). So, this electric shock would hit me constantly throughout the day with the slightest movement. I went for p.t. and got rid of it, but it wasn't fun. I hope you got yours under control!
I'm confused about pain. On the one hand, I feel like I don't deal as well with pain now as I did when I was younger, but on the other hand, I always compared pain to labor and childbirth, and to me, the only pain I've had that's worse than labor is the pain from my back going out last year. Nothing else comes close. I thought I was going to die in labor--when you dilate from 0 to 10 in a matter of a few hours, it is pretty intense!
Just an update. Had a major but quick flare over the past week. Intense pain and fatigue. Had to up pain medicines and switch to another anti-inflammatory. Feeling much better today. Interested in talking with rheumy about Enbrel and what I should expect from it. Might push for knee xrays, though doc feels it's not needed. He says he feels no damage but why do my knees hurt all day long? Feeling optimistic though.
My in laws are in town. I love having them but it requires more activity then I have right now. Trying to find balance between needed rest and not being a bad host. They understand and seem to get the PsA thing. My father in law has Ulcerative Colitis. He's considering going on Remicade.
Hi amielynn, I have to share that for over two years I have been asking over and over why my knees hurt so much, even when my PsA generally is ok.
I pushed for x-rays which showed nothing. Then MRI's which showed very little damage, only some small meniscal tears and a minor patella tracking issue so I asked for a referral to a surgeon. He refused to operate. I'm glad he did, suddenly my knees are better than they have been in two years. My dose of Simponi has been increased so I suppose that could be a contributory factor but it's not improved anything else.
This is one random and constantly perplexing disease.
Thanks Jules, I won't. I hate the "what ifs". Maybe the x-rays will but my mind at ease. Maybe not. I'm not yet at my 1 year anniversary on Enbrel, so I know I need more time to tell. Also it's winter. With it's aches and pains. I'm wishing for spring already :)
My feet, knees, hips and every flipping thing really are complaining bitterly about xmas shopping. Kind of takes the sparkle off the tinsel. Humbug! But also Happy Christmas!
amielynn38 said:
Just an update. Had a major but quick flare over the past week. Intense pain and fatigue. Had to up pain medicines and switch to another anti-inflammatory. Feeling much better today. Interested in talking with rheumy about Enbrel and what I should expect from it. Might push for knee xrays, though doc feels it's not needed. He says he feels no damage but why do my knees hurt all day long? Feeling optimistic though.
My in laws are in town. I love having them but it requires more activity then I have right now. Trying to find balance between needed rest and not being a bad host. They understand and seem to get the PsA thing. My father in law has Ulcerative Colitis. He's considering going on Remicade.
Re random pain etc. I duly showed my rheumy my newly swollen joints and griped about the pain and he responded with one word: "inflammation". I think that was shorthand for "you're staying on Humira for now because you're so much better than you were and changing wouldn't necessarily help so button it and wait & see." It all depends on how bad things are I guess. Not too bad in my case .... that rheumy's invariably right.
I would agree. I am miles away from where I was. I am just VERY tired of the pain. That nagging pain. That constant drum of pain. It's always there. I hate it. I would like one day free of pain. It's either take more pain meds and "check out" or take a little and suffer some. I know I'll never be pain free but some days I just want a break. Something other then walking with my hands gripping furniture.....
My rheumy is a great doctor. He listens to all my concerns and nagging. Then he says, give it time. I'll take more time, this time :)
Oh amielynn, I read this and it was one of those times where the words just hit home. You can get so weary of it can't you? My rheumy said something about time in addition to the 'i' word, something vague about the time factor. And of course I thought 'yeah, but ...... but ....' and that's as far as I got. Let's hope even more of this patience we all try to cultivate does the trick.
amielynn38 said:
Merry Christmas to you too Sybil.
I would agree. I am miles away from where I was. I am just VERY tired of the pain. That nagging pain. That constant drum of pain. It's always there. I hate it. I would like one day free of pain. It's either take more pain meds and "check out" or take a little and suffer some. I know I'll never be pain free but some days I just want a break. Something other then walking with my hands gripping furniture.....
My rheumy is a great doctor. He listens to all my concerns and nagging. Then he says, give it time. I'll take more time, this time :)