10 things you should know about RA is an interesting and helpful read, and there are 5 Things to Look for in a Rheumatologist. Start here, sweetie. See if this helps.
Thanks again, V. I think I'm just really fighting the diagnosis with a lot of denial, which isn't going to do me much good, I know. I'm still trying to reason my way out of what is instead of actually accepting it.
And I'll ask my rheum some more questions at my appointment today. I'm not sure I want him to switch me off the Enbrel. I feel like it's definitely working, but is it enough when I'm still in pain? Or is this about as good as I'm probably going to get? On my better days, I feel like I can live with this, even though it requires some serious compromise. But on my really lousy days, I just want to take my toys and go home!
Oh, Buttercup........I do know what you mean. I came home from work four hours early from work to take a nap because I couldn't sleep last night. Now I have completely lost my voice, which may be a complicaiton of RA. Always something to investigate. I am off to take a nap and recover from my lack of sleep. I certainly hope you get at least some of the answers you are searching for from you RD. Please let us know what he or she has to say. I have a very difficult time getting my RD to answer anything like this...she is all about the here and now...and I can appreciate that. She doesn't have a crystal ball. She just wants me to get out there and live my life. I do like her! Hugs to you, sweetie!
V, I'm so sorry you're not sleeping. It seems like one of the fastest ways to a flare is a crummy night's sleep for me.
The amazing Dr. L was absolutely great, as always. He said, "Of course it's all extremely individual. Every patient has a different response to time, therapy and medication. My goal for you is always going to be remission. I won't ever stop trying to get you to the point that you barely know you have this disease. We're still early in the game, too. There are lots of meds we can try, and something WILL help. Yes, I've seen people who never get relief, but those are the exceptions to the rule, and I'm still trying to find ways to help them. If you don't give up, I won't."
Basically, it was a very kind and responsive, "Who knows?" but he listened to everything I said, answered my questions, and didn't treat me like an idiot. He also didn't say it as if he's not had to say that 1,000 times a day for at least 10 years, but he's probably raking in $300,000 a year. If I made that kind of money it might not get old for me either! .
He's now doubled my Enbrel to 50mg twice a week for the next three weeks because I'm definitely responding, just not ENOUGH. If I haven't achieved a much better state by then, we'll move onward to Humira. If that doesn't work pretty swiftly, he'll try another type of biologic other than a TNF-blocker.
Sounds like a great visit, Buttercup. I think your RD is a keeper! Wishing you the best with your new meds. Please let us know how you are doing.
I know what you mean about lack of sleep.... I took a 4 hour nap this evening, my body was wore out. It does sound like you had an awesome visit with your RD. I hope for the best for you over the next few weeks in reaching a good place. I also FEEL you when you say that you want your old self back. As I'm sure that everyone can tell, I am still adjusting to all this myself and I am very very ANGRY... I want my old self back. I had a huge anxiety attack last night and again today. Todays was the worst. I cried for an hour and with the help of my very understanding daughter have made it through another one without going to the hospital... Each time I get more tired and weaker from them. Tomorrow I'll probably call a shrink my therapist recommended... I apologize if I don't come across as helpful as some of the others, as you know its just hard to adjust. And I'm not doing a good job of it. God bless you oh and I've about lost my sense of humor too. Just hope we can help eachother laugh through some of this together. Have a good night.
That was a very helpful site. thank you for sharing it.
I hope today is looking a little bit better for you. The anxiety and the anger can be so consuming! Intellectually, I know that being angry isn't going to help me - in fact, I know stress worsens a flare - but it's so hard not to be angry and frustrated with this disease. It's hard to accept that the old me has turned into this person with RA.
I'm really glad we're all here for one another. It definitely helps to hear the perspectives other people struggling to come to grips with it. Moreso, it helps to hear people like Lene and V who have not only accepted RA as a part of their lives but manage to thrive and be happy again. We'll get there, Angie. We've got to!
I'm a bit late to this, but thought I would put in my two cents anyway...
You will know you've hit the right thing when you sing in the shower again. When you have enough energy to spend an evening with friends. When you end up having a flare for a couple of days because you were out having a good time and forgot about being careful. It's little things like that, things that mean the focus has shifted to your life instead of the disease.
whether you will have pain will depend partly on how effectively your disease is suppressed. Although it is now more possible than ever before to go into remission, many people have to settle for their disease being well controlled, rather than all the way into remission. Your level of pain may also depend on how much damage has happened in your joints before you got to the place where your RA is suppressed. Although you may not experience pain related to active inflammation, if your joints have been damaged you may have pain related to that. It's a different kind of pain - sharper, less tiring somehow. If you do have pain, talk to your doctors about getting better pain management. it is not reasonable to expect you to suck up the kind of pain that interferes with your quality of life. If you have that kind of pain, ask for a referral to a pain specialist, especially one that approaches the topic from a multidisciplinary point of view. It is very possible to learn to live with pain - better pain meds, meditation, counseling, physical therapy, acupuncture, etc. can all help you to get a better quality of life.
once you get your disease under control, it's possible that you will still have to pay attention to managing your energy - working within your limits will make it easier to avoid flareups or overdoing it. Being conscious of where your limits are and getting the rest that you need when you need it will help reduce the disruptions to your life.
it is a reasonable goal for a medication to make you feel significantly better. The problem is that everybody reacts differently to medications. So although Enbrel may work well for one person, it may not work for you. Unfortunately, it can take a while to find a drug that works. You may also want to talk to your doctor about combination therapy - for instance, many doctors combine methotrexate and Enbrel, or methotrexate and one of the other Biologics and it often works better than just one medication alone.
Hang in there. It gets easier. What happened when you saw your rheumatologist?
Thanks for your two cents, Lene!
I think I had a reply a bit further up from the 18th. The rheumatologist basically told me that we're all very individual, and that if I don't give up, he won't give up. One way or another we will find a way to make me much more comfortable, and hopefully soon.
He doubled the Enbrel, so I'm now taking 50/ml on Wednesdays AND on Saturdays. I've had a good response to it, but not good enough. We're going to do that for three weeks and see how things are feeling. He called me this morning to see how the increase was making me feel - a little lightheaded and a bit nauseated, but my pain is down to a low zinging like you'd expect from a badly whacked funny bone. It's a strange change, but he says that should modulate a bit as pain decreases. I'm to let him know if anything becomes numb. So far, it beats the hell out of the sharp pain, even with the dizziness and nausea!
sounds to me like you have a very good doctor, someone was on your team and fighting just as hard as you are. Pain down is good!
Check out my post on managing side effects for tips to reduce the nausea.
keep us posted, please?
The last few weeks have been crazy, but I saw my rheumy today, and he wants more of a response than I'm getting from Enbrel. He gave the option of trying Humira or going straight to Actemra. He says he's pretty certain I'll respond to Actemra, but that it's slightly more risky than the TNF blockers. I went with the Humira for now because I'm just not crazy about the infusion process. I don't like swapping all these medications around. It makes me nervous.
I'm getting really tired of all this, but I've also been under a tremendous amount of strain arranging care for my mother after her heart went into A-fib last week - and won't come out of it. Would I have responded better to the increase in Enbrel if I'd been under less stress? I can't help wondering.
Many people do find that stress exacerbates the symptoms, so it's possible.
I'm a firm convert to Humira - used to be on Enbrel, but it gave me some side effects that meant I couldn't continue. Humira has done wonders for me and my quality of life for five years now, so I hope it'll work as well for you. If you haven't done your first shot yet, be aware that it stings like mad. If you inject it in your belly, pinch the flab (that we all have, so it's okay to say it) hard and hold the pinch while you're injecting. It reduces the sting, although it's quite normal to swear like a sailor anyway. Some people also find that icing the injection site for several minutes before the shot makes it easier.
I'd noticed that Enbrel stung in a nasty way, too, so it wasn't a shock when the Humira made me say words generally reserved for stubbing toes on the marble table in our living room or getting cut off in heavy traffic.
I wonder if giving it a month to work will be enough? Dr. L wanted more of a response from Enbrel and says he doesn't hold out a great deal of hope that I'll react better to Humira and really wanted to go with the Actemra. I'm such a baby about this. The thought of IV drugs is a big stumbling block for me. I associate IV medication with being really sick. I don't want to be that sick!
I was at a RA/OA forum last night and the keynote speaker - one of Canada's leading rheumatologists - talked about how presently, no one really knows why some people respond to one medication/biologic or and some to another. He also mentioned that it's very difficult to predict how a person is going to respond to a medication. Which leads me to believe that your doctor may be pushing Actemra because it worked well for someone else who didn't respond well to Enbrel. Of course, I'm not a doctor, so I could be wrong on that.
Humira usually acts somewhat slower than Enbrel and can take up to three months to really kick in. I changed from Enbrel to Humira and when I made the switch, I had a couple of anxious months. My doctor told me to play with the dosages and how often I took the medication. It turned out that getting my shot every 9-10 days works best for me - the recommended every two weeks is not enough. Some people also find that increasing the recommended dose can be helpful. If the medication doesn't work after about one month, which should be two dosages, talk to your doctor about trying every 10 days or increasing the dose.
I hear you on the IV - I don't want to do that, either, mostly because I don't want to have the kind of life where I have to dedicate a full day to go get an infusion. I don't have time for that and it would make me feel too sick. Still, if there were no options, I'd do it, but I would pout about it. There is at least one other Biologic that is also administered by injection - Simponi is one and it's possible that there's another one, although details fail me. It's Friday afternoon and my brain has left early for the weekend.
Keep me posted, please?
Those are exactly the questions you need to ask your RD. I am so "old" and forgetful these days, that I write my questions down, or I would forget half of them!
There are no cut and dried answers, because RA is not a predictable disease. It affects everyone differently. There are some people who do go into "medical remission". They stay on meds, but are able to lead a fairly normal life somewhat akin to what they led before their diagnoses.
The sooner RA is caught and treated, the better your chances of medical remission are, or so I have read. I am not a doctor or a nurse, but I do read a lot, and this has been my experience with fellow RAers who have shared their stories.
I am sero-negative, and it took me many years to get a diagnosis. I take Humira, MTX, Celebrex, Prednisone, and a host of other medications. This enables me to still work, although I miss days when I am flaring. It enables me to do a few things that are very important to me. Without these meds I would be home every day, barely able to move. So...for me, my meds are working well. The in no way enable me to function at a high level, as I did before, but I have a new "normal". I still find great joy in life, and figure out ways to get things done.
I set my priorities, and stick to them...for the most part! LOL If I did not "ration" my energy, I would not be able to enjoy life. At my house, the dusting is not as important as an afternoon spent with my husband, for instance. If I only have energy for one, I choose my husband.
I would love to post some links for you, but the site is giving me trouble tonight. I may try later.
Hang in there Buttercup. Ask your questions, and go from there. If your RD is a good doc, he will help you through this period of wondering what to expect.
I am still new to all this too and I did ask those types of questions to my RD. I think its their goal to "help" you get to the best place and hope it can be "remission"....Sit down with and build a strong relationship with your doctor and remember that you are in charge of your healthcare and you are your best advocate. Honestly like V said its on an individual basis, each persons case is unique. I am in a tough spot myself, outta work for months and not truly enjoying my life but trying to make the best of it. I feel guilty when I am down in the middle of a flare(which seems to be alot for me), because of the people that are sicker than me, like cancer,etc. BUT, I also know I AM SICK. It is very painful, life changing and draining. Some people think its not all that bad too, just take meds and you're fixed.(Ignorance of RA is so unbelievable...) NOT!!!I have found it helps to learn to really appreciate the small things and hugely, this site and the support with exceptional advise has been great therapy for me. Oh, I am seeing a therapist for my anxiety that apparently came with this disease too! I am a supervisor on a combative alzheimers unit as a profession for 13 years, I am the mother of a daughter with Aspergers, a form of Autism and two awesome sons. I am used to STRESS,CHAOS and the unknowns that come with improvising daily life , oh and the wife of a husband that thanks to genetic spinal stenosis and modern surgery recieves disability.... I was wonder woman, this disease is worse than all of the above going bad all at once at the same time!!!I tend to blabber on here but its the truth... I understand your feelings and I fell your aggravation also. I'm still asking myself and the community, when I'm told it will get better, just exactly what will be better for me???? Maintaining, remission, or my ability to grab this by the horns and take back my life for whatever better will be???? I feel your pain sincerely. :-) Angie
hi, everyone. I am a nurse, (license not active currently), and i more than know how most male docs are, especially when the patient is a woman, knows her body very well, and advocates for herself, her body and her family. I know I have serum neg RA. My ortho has had me tested 3 times, and my primary has tested 2 times in the last 5 years. I just had 2 TKJ replacements, which I absa-smurfly adore, and this RA is severly messing with my life, my brand new knee joints, and I am petrified to go see another doc, not because I dont want to advocate for myself, but because I am sick and full to the tippy top of my head, of docs telling ME what I cannot do. I am scared to go on RA meds, and scared to NOT go on RA meds. I am the single Momma of 3 beautiful, smart, talented, oh my gosh, funny teenagers, whom have the misfortune ofhaving to be up to their eyeballs with their abusive/addict Dad, (Yes, its all been reported, but just the same...), and I must pick my battles, for Pete's sake. If any of you have teenagers, you might understand, that for better or worse, the children, have to figure out for their selves, who their Momma, and Dad, will, and will not be, to them, in the course of the child's/childrens' lifetimes. This is goofy, and I am so embarassed because, I feel too sick to "battle" with another doc, and too sick not to. I am used to being an athlete, active, and very outgoing. For the last 10-12 years this RA has taken that out of me, sometimes it feels like it took my personality from me. Am I just going out of my mind? I hate pain meds, but without the mass anti-inflamatories, I cant function. Now, those barely allow me to function. Cutting the tops off of fresh stawberries the other day, and my thumb, and fingers wouldnt "do" what I wanted them to. Every single solitary joint, excepy my brand new (but none-the-less NOT real, or alive) knees, hurt. Bursitis in hips, shoulders, elbows, those silly systs were huge when they took my old knees out, doc said. He also said, his PA, who came into the OR, after I had been asleep already, could not believe I was 40 years old based on the damage and degeneration inside my knees. Doc had to have the anesthesiologist move the drape so his PA could see, I was under 80 years old. What do you think? I suck at asking for help. Midwest born and bread. Farms, horses, you name it......plus Im a Momma, and a Nurse....usually the one "helping". I am a great Momma people say, and a great nurse others say. I KNOW I am a HORRIBLE patient. thanks for having this out here, and thanks for listening. -mary
Your doctor is right :) Never give up! There are many options available to us, RAers. Partner with your rheumy to find your own "magic" drug. It is a very individual journey for all of us. There is absolutely no one in the world who knows your body like you do. Listen to it. You'll be amazed how well it communicates with you, if you give it a chance. This site is amazing with people who go through all of this. I will be forever grateful for the advice given to me here. It is a great therapy when you needed it. I was experiencing a huge setback last year when Enbrel stopped working, but now I'm full of energy, hope of living a 'normal' life again. It does not come easy. It takes many changes, but all of them are worth pursuing. You should not change your expectations of quality of life as long as there is hope for good treatment. Good luck in finding one!
I was on Enbrel for about two years about 8 years ago and most of my symptoms disappeared and I gained alot of strength. It worked effectively for 2 years then I had flare ups. For the past 5 years I have been on rituximab, a biological medicction which is even better. This is administered through two doses of an infusion which takes about 6 hours at a time two weeks apart as a hospital day care case. This leave me with a more or less a pain-free period of up to a year. I have a flare up about once a year when I need to have a top up. I live in the UK with our glorious National health Service and this costs me nothing.
Yes, you should expect your medication to make your life ALOT better. We all know this disease affects everyone differently . So be prepared to try many different medications plus combos of medications until you are satisfied with your quality of life. I've used Enbrel & now I'm on Simponi & I'm pain free 98% of the time. There is always a bad day if I've over did it physically. Good luck in finding what works for you - also be very verbal with your doctor. You & he are a team in your treatment.
Oh, and if you ain't gotta sense of humor, get one.... It helps!
I used to have one, but it's rapidly disappearing. I want the regular me back!
I missed my old self too and had a little pity party about it. I finally decided to try my best everyday and make the "different me" adjust to all the changes. It is terribly hard but almost everone has something terribly hard to deal with in their lives. Hang in there. There will be good and bad days and the real you is still in there she is just making adjustments where needed and your past strengths are still there for you to call on when you can. God Bless.