I am on my way to starting biologicals that is why I have been frequenting message boards a bit more, to get a better view on which biological seems to work better by people who actually take them.
I have read a few members stories and replied to a few and yet I am confussed after reading more posts from the same person. Not trying to single anyone out, but just wanted to know if the results they are experiencing is a common experience.
I was looking more into Enbrel and Humira. After reading a members post on here and then thinking "Hey, that sounds like it might actually do me wonders!" and then a couple of weeks later to read that same person is taking pain pills.
I am confussed? If the biological makes you feel so good and have more energy, why would you still have to take pain killers? Yes, I have read that the biological wears off early sometimes or a couple of days before your next shot. I have realized that it is common, but how can the pain be so bad that you would need pain pills? Doesn't the biological plus the other meds you take in conjunction help with the pain?
I just do not want to get stuck taking a certain biological and then to just have the same pain I had after I started it and then rely on pain pills to take my pain away. I guess I am just nervous about starting a biological and I hardly ever use pain pills as it is now. I just use them when the pain is so bad that I feel like something is "broken".
I understand your confusion. I have been on Enbrel for almost 6 years and have had RA for 20. I've had a lot of damage to hands and feet and have had several surgeries. Enbrel has certainly slowed the progress of this disease. I am still very functional. Enbrel cannot restore the joints that have been damaged. Because there is damage to those joints, there is also pain. I never expect to be pain free. Pain pills are necessary for me. I'm lucky in that I may only have to use them at night. There are many who are much worse off with this disease than I am. Even though Enbrel or any of the other biologics have provided wonderful results to those suffering with moderate or severe RA, it's not going to cure it. Pain is a part of the disease. My hat goes off to anyone and their doctor who have managed this disease to the point where the patient is pain free.
The biologics don't work for everyone, unfortunately. Should you decide to try one, I hope you have wonderful success and wishing you that you will be pain free.
Hi Granny25
Thank You for your post. It is inlightening to hear.
I guess my confussion is really just to how someone can have RA for just over a year and have such bad joint damage? I mean if you have been on other meds the whole time that should aid in less damage, wouldn't you think that you would not need the painkillers, because many of the meds you are on in conjuction with the biologicals have some form of pain relief in them as well. Right?
I might be wrong. I just want to find out what is best for me and my lifestyle. I do not want to have to end up taking pain meds for joint damage pain. As I know I have a good bit of joint damage. I just want to be able to take less pills as it is now.
I know I will never be pain free, but I am hoping to have no pain that requires more than taking a few naproxan pills a day. I just do not want to have to resort to pain pills for my pain.
Moo, The amount of pain pills I take daily vary. Some days very little. I think if you do not have an addictive personality - you should not worry about painkillers. I take milder ones on better days and stronger ones when I flare. I am comfortable with them and feel that anything that allows me to live as normal a life as possible is a good thing. I worry much more about the Dmards and Nsaids. But they have given me trouble. Enbrel has been all good. When I first started this ra journey, I also really worried about pain meds - it has been good to let that go. Good luck on the biologics.I managed quite well on weaker DMARDS for many years. For me the DMARDS have helped me to manage with fairly mild/moderate pain on a regular basis. About three years ago I started taking MTX and once that was increased as much as it could be I started Humira. Now I take Humira and 25mg of MTX. As my pain increases my doctors have always adjusted my DMARDS to eventually control the pain there for eliminating the need for daily strong narcotic type pain pills.
I think everyones tolerance for pain is different. What might feel like regular managable pain for some; might send others to bed and cause them to not be able to manage at all. We're all very different in the way this disease affects us....but also how we manage it.
Don't get me wrong. There are times when I do take prescription pain pills; now I use tramodal and muscle relaxers....but Advil is my pain medication of choice. I use the others if nessesary at home, at nights or on weekends. But Humira and MTX has made it possible for me to get by most days without anything stronger than advil....many days I don't even use that.
AND~Granny makes an excellent point saying that she doesn't expect to be pain free. I think once you've given yourself a chance to accept this aspect of life with RA you'll look at pain and manage it in a totally different manner.
DMARDS have definately slowed the progression of RA for me. If you can stop the damage from occuring early and slow it from progressing you'll have less pain in the end.
I have what is termed Morderate RA. There are many, many far worse off than me....and I know just from the pain I experience if I was in there shoes; I'd use pain killers as much as nessesary to make my life comfortable. We're all very different. Try not to compare yourself too much with others Moo....you'll have to figure out what works best for you. Only you will know that.
Good Luck with your choice. Biologics have been really good for me.....but so has MTX. If you haven't considered this; it could be an option for you without having to start with the injections if that's something your concerned about.
We'd love to see more of you here.
Lovie
Cows say moo...I've had ra since 1992...it is severe ra with bone damage, nodules, deformities in the hands and toes and wrists. I was only prescribed "pain pills" for before and after surgeries. I've had 3 surgeries since 1997 due to RA.
Since 1992 I've managed on MTX, prednisone and naproxen (or celebrex depending which one I was prescribed). In August 2005 my new RD upped my MTX to 20mgs and put me on Humira. I did have a few pain pills left from the last surgery and would just take one if I over did it and needed to. I'm not big on heavy pain meds...I feel for myself and my family history I could easily get addicted..so I take as few as possible. Besides, I've never asked my current doctors for pain meds. I think if I did they would think that my current drug plan wasn't working for me and go with another option.
For me humira has given me back parts of my life that I had missed. I am currently off of it for a couple weeks due to a cold, and I can really tell how much the humira has helped me. Now it's harder to get up, reach down, walk, type, or do anything that it helped me to do.
Good luck with your choice..I hope that you can have less pain and a more active life once you get on one of them.
I think we all know that pain will be a part of our lives. The Remicade hasThanks to all that replied
All these meds work differently for each person. My biologic is Kineret. I take it along with methotrexate. Over the months I've taken it, I've managed to get completely off the Vicodin, then very gradually off of prednisone completely. I, too, didn't like the idea of addictive drugs, even though I'm not an addictive personality. I didn't like the Vicodin putting my brain partially to sleep--at least that's how it felt. Since I was diagnosed a little over a year ago, on a scale of 1-10, my pain level has gone from an 11 down to about a 1 or 2 most days. The only thing I take for pain is one or two 800mg ibuprofen each day. Yes, I'm still a bit stiff, but nothing that's not liveable. My point is that you shouldn't assume that what works for one will necessarily work for another. You just have to find out what's going to work for you. And you're not limited to only two choices--live with pain or take pain killers. I think lots of us have gotten great results with just a biologic and/or MTX.
Good luck to you!
Hey Moo, The beauty of having a doctor that will prescribe you different "levels" of pain meds is that you have control of your "pain control". Trust me, I love being active and I have plenty of responsibilities. I am more effective controlling my pain than "trying to live with it". I function well on all of my painkillers except the stronger ones. I only use those with major flares and I can't function when I am flaring like that anyway. I am married but luckily I don't feel I have wifely "duties"
PS I have not taken a painkiller in three days, I have had a cold and I have had no desire to take painkillers. I am lucky - I really do not feel I have an addictive personality. Prior to ra, I always threw away pain meds.
I do not feel like I will ever get rid of all the pain due to joint damage. So, why would I want to take pain killers to easy that pain that is going to be there everyday? I would end up taking pain killers everyday if I wanted to be "pain free". But I know that is not possible. I just figure I should not have to live with unruly pain that Ibu will not get rid of. The pain that Ibu does not get rid of is the pain I live with, nothing wrong with that! It is part of having RA for years and not treating my RA it an effective way. I believe pain killers just mask the syptoms of what you need to be listening to -- your body. You have pain or flair for some reason; maybe it is because you are pushing your body to far or you just have a new disease which can occur with have an auto-immune disorder. I just think you should listen to your body and not take pain meds; you are in pain for a reason and it is just not because of RA in general.
Just me 2 pennies.
Cows--
You and I agree that pain meds only cover the symptoms and don't deal with the cause. So if you can deal with the pain without painkillers, great. But you must remember that the pain you're having is not just from past joint damage. I'll bet a lot of it is from a flare or currently active RA involvement. You can treat that with biologics, MTX and/or prednisone. (Prednisone only for short term help, the others for long term.) None of these are painkillers. They treat the cause. So please, please look into them. I don't know how much research you've done on them. I hope you'll make a decision soon to aggressively treat the cause! The sooner you do, the sooner you'll feel so much less pain. That's the whole idea, right?
Been lurking for awhile and just had to make my first post today. I am also having to decide which biologic to go on. My ra is severe. I have to wonder if people are on bioglogics, why do they need pain medication? I can see taking some IBU or something similar, but why would you need darvocet and norco? It would seem to me that if you are using those medications with biologics, then your biologic is not the right one for you. My doctor gave me darvocet but he told me that once I get on one of the new medications I should not need it anymore. I don't want to live on those pain meds.OU812--
That's exactly what happened with me. My biologic of choice is Kineret. For others it might be one of the others. But your doctor's point is well taken. It does take awhile for the biologics to kick in--for me it was about six weeks. But once it started working, I didn't have need for the narcotic painkillers. Even got off the prednisone. And if the biologic you choose isn't doing anything for you, time to try another. I think for some, nothing will work perfectly, and maybe they have to supplement with painkillers. I consider myself one of the lucky ones whose biologic took me from the worst pain I've ever known to occasional days of slight discomfort.
BTW, welcome to the board!
Hey you guys. I agree and disagreeI am not passing judgment on anyone. I just wanted to know if I went on a biological if I would be able to manage my pain a little better and not have to take pain killers. I am slowly running out of options here and I want to know that I still have the option to take pain killers in my "old" age and not now, when other meds could work for me.
Hi, Roxy--
We get it. Obviously, we're all different. We would all hope that our biologics or some combination of meds would make it unnecessary to take any pain meds. But it won't be that way for everyone. I figure if your biologic is at least taking some of the pain compared to before, then at least you're moving in the right direction. And from what I've seen of your before and after posts, it seems it might be working that way for you. I'm just extremely lucky that the Kineret works so well for me that I could get off the pred and Vicodin. I definitely know how lucky I am in that regard.
Moo~once I reached 20mg (I think it was 20) of MTX and it no longer did the trick, that's when I started on Humira. I'm not sure how many years you've had RA but for me I've noticed that over time my body needs more and more of any particular medication to keep up.
Years ago Sulfersalzine worked for me. Now that would not be effective atall. I've increased and increased and changed medications over time to keep ahead of things. If you have your DMARDS adjusted right; especially if you've responded well to them in the past.....a slight increase or even the addition of a biologic will make a big difference.
I'm not sure what your dose is at now with MTX....but if it's not too high now you might could get by for a while longer with just a slight increase.
BUT; I think to answer your original question: Yes....it is possible that you could be on a biologic and not need extra pain relief, not even IUB. Many, many have great success with it.
[QUOTE=cows say moo]I just wanted to know if I went on a biological if I would be able to manage my pain a little better and not have to take pain killers. [/QUOTE]
Yes, I think biologics might just do the trick for you like they did for me. But you'll never know until you give them a try. And you can't expect them to work overnight, so I say get aggressive and get going. Then give them some time to kick in. Oh, and by the way, MTX alone didn't help me much either. Had to add the Kineret. Look at it this way--they're sure not going to make the pain worse, and you might be very pleasantly surprised at what you've been missing. Plus, the biologics will help you arrest trhe progression of the RA on your already damaged joints. Without something, they can only get worse, right? And I know you don't want that.
So which biologic will you be trying?
I am going to talk with my RD about which he thinks is right for me.
Thanks
[QUOTE=OU812]If it is not helping with the pain, chance are it is not helping with the progression is it?
[/QUOTE]
OU812, I think you may be trying to paint this too black and white. Sometimes, you have to look at the gray. Yes, if it does absolutely nothing to relieve the pain, chances are it's not helping with the progression, either. But what if it takes half the pain away? Maybe that means it's slowing the progression by 50% as well. That's something, for sure. Better than doing nothing. Same with your other question. What if it takes 50% of the pain away, allowing you to take fewer pain killers? Isn't that a step in the right direction? If one biologic doesn't do anything for you after you've given it time to kick in, then you can try another. You might get lucky like I did. Maybe you'll only be partially "lucky." I'm a huge proponent of the aggressive approach. You will never know until you try. I just don't see the disadvantage of at least trying, unless you have crummy health insurance. Not too many can afford the K to K per year these biologics cost retail.
[QUOTE=cows say moo]I always read that they were to help with deminshing the symptoms of RA and if not put you in a drug induced remission.
[/QUOTE]
I'm not sure I know what you mean here. Biologics, by their very nature, actually block the "bad cells" from destroying the "good cells" thereby stopping not only the inflammation that causes the pain, but in the process also slow or stop the joint damage caused by the inflammation. I would consider that an actualy remission. I wonder if you meant painkillers put you in a drug-induced remission. That would make sense, since they mask the symptoms. Maybe I just misread what you wrote.
Let us know what you decide, Moo and OU812.
No, when reading other posts people feel so good on the biologics. I do not understand if you feel so good why you need painkillers. To me painkillers mask the symptoms and not take care of the disease. That is where biologics come in i gather.
TY for the information SaraG. I will talk more with my rheummy later this month and post more.
Sara I agree with your take on biologics, and DMARDS in general. I'm not sure at what rate this disease has progressed for most (that would be a good topic) but for me with the use of DMARDS over the span of 12 years mine has progressed rather slowly. I do have deteriation which shows on x-rays that were not there in the beginning but I feel like had I not been on these medications all these years the deteriations would have been much, much worse. My doctors are of the same opinion.
OUB12 it just takes 3 to 4 weeks off of your meds for you to realize; yes....they are working. I know from experience that although I do experience pain at times, it's much much less while on the proper medication to control the activity of RA.
And Moo~I know what you mean by medication induced remission...I got there years and years ago. I thought I was cured; told my RD I was going to stop taking sulfersalizine, plaquinel and another antinflamatory I was currently taking. I didn't need them...I was fine. My RD begged me not to do that. She said it's just medication induced. Without the meds I'd be back in her office with in 3 months in worse shape than before. WELL; I'm one of those folks that has to find things out the hard way to learn. I think I made if 6 month because I was too stubborn to admit I was wrong. That's when I started MTX. I haven't totally been under control since. It taught me a good lesson; I need medication to control this. Maybe one day I'll get back to the point where I'll say "I don't need these meds anymore" but one thing I won't do is stop taking everything completely again. Hopefully I'll cut them back dramatically....but I don't foresee me getting off the meds competely.
Lovie-- We agree more than you know. I know I'll never be completely off my meds. I'm just so lucky not to have to take anything more than ibuprofen for pain. Because it appears we caught the RA early, my joints don't have much damage, and I hope to keep it that way with the help of Kineret. (Although the idea of Orencia has been fascinating me, given one monthly half-hour infusion vs. a daily shot. You may remember I can't take Remicade, Humira or Enbrel, because I have MS, and they exacerbate--or some think even cause--MS.) Anyway, hopefully we've been able to convince these two folks to go further down the path toward biologics and hopefully control of their RA. I sure hope I did not DISCOURAGE trying biologics. As Lovie and Sara know, my quality of life has improved drastically since Enbrel- even though I still take painkillers. The amount of painkillers I take has been reduced considerably - my choice. Painkillers are a personal choice. I would rather be as comfortable as possible AND be doing everything I can to control my ra. Also, keep in mind that enbrel is often taken with methotrexate or otherIt really is dependent on your body, the way you feel and react to pain, how your body handles the biologics...
I have been on Enbrel, Humira, and Remicade. In all cases the bios have worked at first then they seem to stop. In each case I went from needing a total of 8Ultram a day, and sometimes Ibu, to needing a couple Ultram a day. I went from a pain level of 7-8 at all times to a pain level of 4-6. I don't expect to be pain free, but I also don't think I should avoid pain meds if they help.
I've increased my Remicade to every 4 weeks and its helping, but at the same time, I've added vicodin, since the ultram wasn't helping enough.. Most days I take 1 vicodin... However this morning I woke up at 5 am.. because I had no pain..none.. I haven't been pain free in recent memory..
My hope for the biologics is that they prevent further damage. I am not certain that the damage is what causes the pain. People have to do what works for them, and not feel like they are being held to some kind of standard of bravery or stoicism.
HI It's me again. I have a question. Has anyone had a problem with lymphoma since they have been on enbrel etc? I have read that having RA makes you at a greater risk for this and if u take one of the biologics of course it even increases that risk more. My family history is full of cancer. Everyone has died from one form or another and some at a young age. It kind of scares me. I haven't got to the point where I need them yet and hope I never do.... don't we all???? I guess u do what u have to do.Pat--No lymphoma for me, and no cancer in my family. But just the idea alone was scary, scary, scary. With your family history, the fear has got to be worse. You're right. You do what you have to do. When the time is right, you'll know, and it will be a question of quality of life or avoid a risk.
Pat; I haven't had any problems with lymphoma either....but with your history I'd just suggest you remind the doctors of your family history if they ever do consider biologics for you. I'm not sure at what point they would consider you too high of a risk, but I'm sure they would consider that.
Don't always assume that just because you've filled out forms in the past that state you have a family history of cancers that the doctors know this. I honestly don't think these doctors look at all that like they should. Always bring it to their attention. Don't assume anything.
No lymphoma here. Ditto Lovie and Sara. It would be scary with a family history. I am so in love with my Enbrel that I tend to forget the risks.I tend to believe what my doctor tells me- A) that I have RA and the Enbrel and sulphasalazine are keeping the RA from progressing- B) Once my thyroid is leveled out I may or may not find some relief from the daily chronic pain and C) I am participating in a PT designed specifically for my situation and D) The doctors put me on methadone for the chronic pain....
So does that make my RA less that yours??? Walk a day in my shoes before you judge too harshly-
So Cows say Moo-
what does that make me- I am on Enbrel, Methadone and Sulphasalazine, plaquenil - prior to the methadone I was on oxycodone and valium and 18 ibuprofen a day for the chronic pain I have been experiencing for the past year....Am I less of a Enbrel Poster Child?
I have RA, FMS and Hashimotos- what do you have- a lesser degree of RA where Enbrel and Ibuprofen help? Some of us have more than one disease and some of us only have one RA- and the degree of my pain the treatment I recieve may be different from yours- because we are all different...From your posts I take it understand that anyone on narcotics and Enbrel are only looking for a high?
I am here to tell you that until you walk a day in my shoes- keep your judgements to yourself...You obviously are lucky and should be grateful that all you need is Enbrel and Ibuprofen...
i have taken remacde ,humira and now enbrel. i think the enbrel has been the best so far only been on it for 2 months. i have had no side effect and the fatigue is so mild now and i have not had a flare since i about the 3 week of the enbrel.and just because you are taking a biologics does not mean you will not have pain or flares, most likely you will still need some kind of pain management. and they say it slows or stops erosion, for some it may but for me it has not. even after being on the different biologics for 6 years i have quite a bit more damage.
now i the subject of pain meds. i take what i need. they don't make me high. i can take a loratab as directed and still work a full day at work. and take care of my family. i know that pain puts stress on your body which makes it heal slower. everyone is different and have different needs. i want to go to my job everyday(have only missed maybe 7 days of work in 5 year due the RA)so, i take my meds as needed. now if, i wanted to stay home where i can hobble around or lay around i probably would not take them.which brings me to my last point. i have been very luck i have had RA since i was 14-15(only Dx @ age 25)now I'm 38,and my RA is not as aggressive as some. i have seen people who have had RA just a few years and they have so much damage. i learned very early in life - live every day as if it were your last. and never judge others sense I'm not GOD. everyone if different and have different needs. so those of you who are judging other for who they are or you think you are so self rightest need to be careful being right all the time is a very lonely place to be.
Thanks Gina-
I did not know you visited this site- this is BrendasReady- I am glad to see you and was wondering how things were- Don't feel sorry for me sweetie- I was merely putting in my 2cents worth to the moocow who was trying to say things that were are totaly out of line about Roxy and others like myself who have not had the luxury of having a miraculous recovery on a dmard and ibuprofen
Talk to you on the boards soon- take care!!
hey brendasready! I'm good i go to both boards. sometimes for what ever reason i can not connect with the server on rafriends. it tells me to contact the someone over there at refriends.Gina-
It is probably just the server- you should just retry it- sometimes that happens to me too....But I just wait a few minutes and presto I am on....This site does the same thing...I think it just depends how many people are accessing the site..
I have only been on biologics for about 7