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The problem with the drugs used to treat RA is that they work differently for different people. Humira was great for me for 18 months, but I do now have a blood pressure problem I didn’t have before I took it. It still gave me 18 months of freedom from the RA. Yes I got sore if I over did it, but I could dance, do yoga and party with the best of them!
My rheumy suggested Rituximab… That scared me to death when reading all about it, but after weighing all the options I did go with it, anything was better than how I felt. |It has worked to a certain extent, but not as well as the humira did!
We all have to make choices as to which treatment we take and which we leave by the wayside. After an initial treatment with MTX tablet’s I have tried the injections and they are fine for me. It was me who asked the rheumy to try them and he said yes, give it a go, informed choice at it’s best. Others may not chose that path.
If you chose not to take a treatment that is offered to you, that is your decision and yours alone. No one else knows how you feel and it is wrong to condemn someone for their choice.
We all have choices in life one of the best choices I made was to rejoin FB and on doing some research on the net finding RAW. It’s good to support and help each other every day.
Thank you Kelly for all of your hard work and research you do to help fight this nasty disease.
Hi Jakki, what a great advice. It has been hard to explain to people why I might try anything now. You know that place where you said “freedom from the RA. Yes, I got sore but I could dance…”? I’ve never had any medicine cut back the RA so that I could do things again. It only gets worse. People who have had better responses to treatment sometimes can’t understand that some others are still stuck at that hard spot back where they once were too “anything was better than how I felt-” Maybe that also is part of the judging of others’ decisions issue?
as someone who is 20 years in I would seriously consider ritux first especially since there may not be any new drugs for 2 yes
I started tweeting Kelly directly about treatment options because of “her” choice of changing to Actemra. Everyone is different but I also feel that her rheum is not doing her any favors by having her choose. I have been fortunate enough to be treated by the top docs in the us and they would never ever say to me “you choose” without presenting me with hard facts. My suggestion to Kelly was to look seriously at rituxan. Rituxan is given with pre infusions of benedryl and solumedrol and a very high dose of ritux infused over 5 to 8 hours. If a drug can give you 12 to 24 months of a better life go with it because eventually you will fail on the drug. I hate to put it that way but you will. I after 20 years living with this disease have no choice other than Actemra or a trial drug. I do not want anyone to be where I am and I do believe ritux should be tried before actemra even if the risk of PML is .001%. I short (yeah right) don’t jump until you put it in perspective and your rheum should help you with that.
Gee, Kimberly, I have several friends on Rituxan so I’d never try to scare them about PML. But Actemra was approved not long before my decision and my doc was worried about PML & involved in the last of the Actemra trials as it ended this yr. Doc leaned toward Actemra, so like I said, one should read, pray, and choose. That’s what I did.
This brought back memories of staring at that bottle of methotrexate in fear. I read alot of scary stories and information online. I imagined myself getting violently ill soon after ingestion. Well, I put it off for 7 days. The pain I was dealing with was finally motivation enough. So I took them and waited…nothing. I felt a little sleepy and fuzzy headed and went to bed early. Big drama for nothing!
However, I took a new medicine last night for another condition and didn’t expect to have any side effects. Instead I got big drama (yuck) and I will not take it again. True, we are all individual in how we react to medicines. We have to remind ourselves of this whenever we start a new treatment, and not be scared off by others reactions, good or bad.
Due to body chemistry we do respond differently, so that’s good to take into account. It bothers me to see how much people are made to feel exactly the way you describe before taking mtx. In many ways, it’s more benign than some other things we use & think less about (at these RA doses, I mean). After hearing horror stories, people might think that every “odd” thing that happens was caused by the mtx… Then they decide based on fear instead of good info. Still, it’s up to the patient to choose & not for others to judge.
It is easy to get overwhelmed by the info on the RA meds, and easy to get scared, when hearing about someone else’s bad experiences with a particular drug. I feel ,like you, Kelly, that we need to first,inform ourselves, then pray, and go for it. Realize that your experience will not necessarily be the same as someone else’s experience. It’s an individual decision, of course. That’s as it should be. But as someone stuck in a continual ,bad, life-altering flare, I’m open to, and happy that there are new biologics to try. For me, it comes down to quality of life. Having had chronic pain ,and RA and it’s related issues for the last 20+ years, I look forward to improving my RA status, even if just a minimal change,although I hope for much greater improvement.
Totally understand Kelly! It’s a shame that we can’t all get better with just one pill or injection, but we’re all human and we’re not made that way. It would be very boring if we were all the same!
I was very, very lucky with my response to Humira, but the Rituximab hasn’t worked as well for me so far. I think that the last flare did for some of my joints as they have changed shape and are sore most of the time now.
I’m just grateful for that time I did have, it was wonderful and I’ll never forget my Moms face when I danced a quickstep with one of the dance hosts on our last cruise together. It was worth it just for that.
Let’s hope that something else comes along that works for all of us!
The big thing that I hear from uninformed family and friends is “why are you taking that dangerous medication when you aren’t that sick?” True. I can still walk. I don’t look that sick. What they can’t see: the exhaustion that comes from chronic pain, the fear of addiction when I take another Vicodin, the grief and frustration at losing my active life, the fear of the hidden effects of the inflammatory process.
I have to admit that I was hesitant at first, especially because my diagnosis is “undifferentiated.” I pressed my rheumy and he said: “You might have RA. You might have PA. What I am sure of is that you have inflammatory arthritis.” He then explained how these diseases have effects that go far beyond the joints. These “dangerous” medications may well extend my life by reducing the inflammation in my blood vessels and other parts of my body.
On good days, it does all seem a bit much. Today, I’m feeling OK–not like I used to, but OK. And I came home from the pharmacy with a grocery sack full of syringes, sharps container, alcohol swabs, etc. as I switch to injectable metho and prepare to go on Humira. Really? I find myself thinking. Is all this necessary? But then will come that bad day that reminds me what a serious disease I have. I want to live long. I want to live well. The choices aren’t easy. People won’t understand or approve. But they are mine to make. This ain’t a dress rehearsal.
Love to you, Kelly. For giving us hope and a sense of being understood.
I don’t have any of those doubts of course because I’m very limited in what I can do due to RA. But, I will tell you that stories like yours have made me think “What would I do if I could have been diagnosed during those many years when the RA symptoms were more mild and would come and go in flares?” Would I have begun treatment? Yes, I believe I would have if I had known what I know now.
Kris, it’s an odd deal. Don’t you get the last laugh if you are right and this treatment is necessary? But how would you ever “prove” that you prevented the severe form of the disease? Odd way to win. But you’d win.
First I am not saying anyone’s personal options are wrong. What I do know if you failed miserably on a TNF inhibitor then Orencia I would really look at ritux because it doesn’t touch the t cells. I believe that 10 or 20 yrs from now RA will have subcategories that will be defined by the cycotines (sp?) t cells and b cells. My other question would be if your doc hasn’t monitored your c reactive protein levels then they need too. The sedrate and RA factors are old and unreliable and most Rheums who go to the conferences and participate in peer groups have known this for yrs. Actemra was just approved in January and according to clinicaltrials.gov is still in trial on dosages and combo medications.
Jakki (and everyone else). I am coming from the perspective of “do no harm” – at least I am trying to. I did well on Ritux as well but then became gravely ill after almost 2 years and was hospitalized in an isolation room (don’t recommend that ever!) for many days. I am still sick from that instance and it has been over 180 days since my last infusion. The theory is that the Ritux and monoclonal anti-body drugs in general including Actemra can build up in the body over time and reach toxic levels. Prior to my journey a long time ago way back when Enbrel was in clinical trial biologics are not always the answer and I have suffered the long term effects of every single one of them from skin infections, I have had a URI for 14 months now and should own stock in kleenex, I cannot be around anyone that even has a sniffle, I can’t go to the pharmacy and stand in line I can’t be around children close to their vaccination times and 100 other things. If I could go back and stick with Methotrexate injected IM and take a pain killer I would in a second. I felt better and had more control of the disease than I do now and for the first time I can say that I am suffering – really suffering so that is why I may come off as arrogant, insensitive etc. because I am trying to let you all know that going to a biologic or monoclonal anti-body may sound good but the repercussions of it can be horrible. I know because I am 43, diagnosed before 23 but symptoms as a teen and I am truly suffering because of these new drugs.
Wow, every time I read your blog I can relate to something, and it’s crazy how close your experiences (or the experiences of which you write) are to mine. I am currently looking for a new dr. b/c my current rheumy doesn’t listen to my opinions. She says, “this is what your taking” and gives me the script. Even when I’ve told her about having trouble breathing, and that everything in me is screaming not to take a certain medication (Rituxan & sulfasalizine). I had a rheumy before this one that asked me what I thought, and listened!
Thing is, I educate myself fairly well about the risks with certain drugs, and know a little about what I’m choosing. For someone who doesn’t, it could be a huge problem with that approach…but I think the dr. should give one the opportunity.
Excellent points, Michael. Some docs will allow input or even accept info that patients bring up / research that they found. Others seem to feel threatened or close minded to patient input. That is particularly unproductive with RA because the disease is heterogenous, the measurements for symptoms are highly subjective, and the treatments are come with fairly high risks. Personally, I want a doctor that I’m confident knows more than I (so glad to have one at this point), BUT who does not reject my input. Have you told the rheumy how frustrated you are with that?
I am going to find a new one. This doctor just won’t listen to me at all. I’m going back to the old dr. or a new one, no matter how far the drive. Thanks for your reply!
As a medical professional, trained in the 1970s, methotrexate was used only for leukemia patients back then, so I was very hesitant to begin MTX, but knew I needed something. After much thought and research, I went ahead and have had minimal problems. Later when I started Remicade treatments, again I was hesitant but the decision to start a particular biological was left to me and I went with Remicade because of financial considerations. After one year, it has helped so I plan to continue. Decisions regarding a medication in a strange field are difficult to make, even with the best knowledge. With insurance having a say, patient having a say (and listening to all the free advice given by friends)and the Internet, decisions are a hit or miss item. One must allow adequate time for response and then move on if there is no improvement! Life is not easy!
All good advice Barbara. Thank you. What part of medicine were you trained in? Are you a nurse?
I used to RA envy all the RA patients I’ve known who got to take less medication than I do. Then an old friend got ALS. There are no real treatment options for that disease. In fact there is no treatment. She died recently. We at least have choices.
Years ago when I chose to start using Enbrel I knew it was a risk. It was so new and there were so few treatments available. But the alternative was that I would definitely be less of a mother and wife than I wanted to be.
When my kids have to make decisions I tell them to do their own research, and remember to look at the big picture. My son has mild Aspergers and has a lot of trouble with anything that is not clearly right or wrong. Decisions are particularily hard for him, sometimes you simply have to choose between bad or worse.
Hi Joanne. That gives perspective doesn’t it? We watched someone go from ALS, too. What you say reminds me of something I wrote on another post – about a perspective on medicine – being thankful that I have it instead of upset that I need it. I’m glad Enbrel worked for you.
Kelly, your response to my post months ago as I was also pondering the bottle of MTX, as well as all the great info and your sincere openness on this blog, was so helpful to me in making my treatment decisions. Thank you!
I did go ahead with it and have since increased to 7.5 mg./week along with my massive dose of plaquenil. I’m happy to say I can put my feet on the floor first thing in the morning, and have been walking to work almost everyday for the past month, which is to say that most of the worst of the inflammation has subsided. Yeah!
Unfortunately, I’m still miserable.. mostly because I’ve been in an almost constant state of nausea for about a month now, the worst of it 1-2 days after I take it, but it never really goes away. I’m moody and fuzzy brained too, or at least more so than usual, and have had horrible chills that left me huddled in scarf and gloves in front of my space heater while my office mate sat sweating in her tank top. Boo! So now I’m thinking about asking my rheumy to try MTX injections. Maybe it will be better. Probably not for all of it, but worth a try..
I guess the point of this is that what I’m getting from your posts as well as everyone else who has replied is that treatment decisions are a constant part of managing this illness, starting with the daily decision to take a drug, or go for a walk, or whatever it is that you’re trying to make things a little more bearable, to the constant little adjustments in doses, diet, routine, etc., and then the bigger decisions about what to try next–the ones that involve acknowledging that it’s still too miserable to accept, even if the next steps carry some real and frightening risks. That feels too much like desperation, which is a really frightening and lonely place to be, especially if your suffering is invisible.
Dear Samantha,
Thanks so much for telling me about that. It’s great to hear from you. No way I can know for sure, but here’s a few ideas. chills: RA causes a low grade/ mild fever (only about a degree) which is the cause of chills for many. You just feel you can’t get warm. It’s like the flu. Methotrexate does not treat the RA fever in my experience & from what I’ve heard. It also doesn’t do a lot for RA fatigue for me. Both of those symptoms are caused by cytokines in the blood to excess – again like the flu. Biologics treat those RA sx for many. Very hard to prove whether the mtx or the RA causes nausea since both do. But this can be treated in several ways. I hope it won’t make you feel like giving up. Some people get a prescription (there are several choices) that will prevent the nausea & take it with the mtx. Often, I deal w/it by pepto bismol tablets or ginger ale or olives… There’s more ideas in the comments page on the Mtx Side effects post. All that said, yes you are right, as my 4 yo says. Managing tx decisions is a contstant part of living w/ RA. The injections are a good option to avoid mtx nausea for most people. And the medicine can also work better. There are a couple of posts on that here. Let me know if you decide to give that a try. Btw: are you taking any prednisone? Comes w/ a list of side effects of its own, too.
Every time I check in on this site, it seems like you are reading my mind. I am currently trying to figure out what biologic to start on.
I was diagnosed about 2 months ago. I started on prednisone and plaquenil, I was trying to avoid mtx. That didn’t last long. But I was still mostly able to perform the majority of my daily tasks. Then last week when I went to my rheumy, I was getting real bad again. He told me that we have to start looking at biologics, however, it may be very likely that we will not acheive remission.
I do really like my rheumy: he is honest with me, and he likes me to be well informed about the disease, the medications and their side effects, and explains my options and asks that I do my own research on these things to be as well informed as I can be. We then discuss what I found out, what is likely fact vs fiction. Yet, last week, when he told me that we have to start looking at the biologics (Enbrel, Humira, Orencia or Rituxan), I went into a depression and broke down crying right there in his office. My biggest fear of these meds is the greater risk of developing lymphoma. I know that having RA already puts me at a greater risk for lymphoma, but these biologics seem to increase that risk. My grandfather and father both had lymphoma and neither survived. So, here I am now: faced with trying to figure out which poison/medicine to put into my body, which may or may not work to help me cope with everyday tasks, and which may or may not raise my risk for lymphoma, a disease that I am already predisposed to getting. Honestly, I don’t know what to do. The doc understands my fear and wants me to be comfortable with the decision we make. He doesn’t want to prescribe something he knows I will be completely uncomfortable with. He said that Rituxan has the lowest rate of lymphoma patients of the 4 we are looking at. Frankly, I am scared of taking all of them and I am scared about not taking any of them.
Jennifer,
You summed it up well at the end. These decsions are hard. I’m glad you have a good doc. I’ve read a bit about the lymphoma thing and some studies say that the risk is really due to the RA , not the meds. It is complicated, but I’ll be glad to find the link for you if I can. (maybe tomorrow) – The Rituxan has it’s own risks – a small number of people get PML, a brain disease. Honestly, the greater risk is not treating the RA. RA will destroy us on its own & treating is the best shot we have. I’ll pray you do what is best for you.
Kelly,
Thanks for helping me find good info. It’s hard to find good information because there is so much out there on the Web and it’s hard to figure out which are trustworthy sites. You are always so positive and helpful. I definitely agree that I have got to treat the RA, I just want to do the right thing.
Jen
I know you do! You will.
I am glad someone like you actually recognizes the personal struggles patients go through when trying to decide what treatment to go through. It is often a balance between what meds you like and what you can tolerate. My treatment is a mixture of meds for my RA and some for my Fibromyalgia. All can make me extremely fatigued. It is really difficult since I am still trying to work at the same time. This was well written and very nice to know i am not alone… once again. You are such a blessing. Thank you.
Thank you, Heather. Have you made sure that all the docs & pharms know all the meds every time so there’s no bad brew with the combination? RA itself is a fatigue monster, so you are right – these things are very hard to sort out. :bunny:
Jennifer – I understand where you are coming from but didn’t your doc tell you that Rituxan is the chemo drug used for most lymphomas now? I do suggest that if you do go on it that you doc and infusion nurse follow strict protocols and make sure they pre-dose you with benedryl and solumedrol and slowly speed up the infusion rate. You will know when it is too fast. My infusion used to take 7 hours!
Here’s a little bit of help from one doc:
http://www.medscape.com/viewarticle/724769
Well, number two is a useful compilation isn’t it? People sometimes insist the tnf’s are identical. Not.
People have told me all these horror stories also. My bones will break, I’ll die from prednasone, Embrel causes cancer, etc. But what they don’t realize is the pain of RA. I will try almost anything to get rid of the pain. I have been in labor three times and it was NOTHING compared to the pain of RA.
I think we get to focused on intricate biochemical processes and forget the body is a biome and all parts are affected. Personally, a whole body anti-inflammation program has been quite successful for me. I didn’t know anything about dmards or biologics like you describe. I couldn’t afford a biologic and one was never needed. I do believe we need to know these mechanisms well enough to make informed decisions, and I also believe treating the entire body is much more likely to result in success.
Bill I am confused what you mean by successful with your program. On another page http://www.rawarrior.com/what-is-remission-of-rheumatoid-athritis-part-3/?show=comments#comment-1540198 within a few minutes of posting this, you posted about having damage and pain & various rheum dz issues.
That said, the biome idea is one that is getting some attention in research so we hopefully we’ll learn something there.
I appreciate this article. I’m newly diagnosed and have had so many people blame do many different foods that I don’t know what to eat! Is there any research on food causing flares? Thanks so much for this great blog!