When Treatment for Rheumatoid Arthritis Is Even Worse than the Disease
Yesterday, we discussed the frequently-asked question of the consequences of not treating RA. People also sometimes say they just can’t take Rheumatoid Arthritis treatment any longer because “it’s even worse than the disease.” Why do patients say that and what’s a reasonable response?
Let’s be clear about terms:
- Treatment: medicine used to improve disease activity and symptoms
- Benefits: improvement in disease symptoms due to treatment
- Side effects: unpleasant consequences brought about by a treatment
- Symptoms: the noticeable effects of the disease itself
For these patients, medicine side effects outweigh benefits.
How can this happen? Let’s look at some logical alternatives.
The treatment benefits seem insignificant in comparison to side effects in these four circumstances:
- The symptoms are not very severe, so the side effects seem very annoying and outweigh perceived benefits.
- The symptoms are severe, but the benefits are negligible, so the side effects are too high a price to pay.
- The symptoms are severe, with good treatment benefits, but the side effects are extremely severe.
- The symptoms are periodic (flares), so treatment benefits are uncertain, making regular side effects more obviously bothersome than symptoms.
What to offer these patients?
It would be important to determine which scenario a patient experiences when they call treatment “worse than the disease.” The patient can probably tell you.
- Listen: Do not dismiss their dilemma.
- Inform: If there is evidence of treatment benefit, let the patient see it for herself.
- Change treatment: Adjust a dose or change the medication combination to increase effectiveness or lessen side effects.
- Treat side effects: Find solutions or treatments to relieve side effects.
I’ll bet you have more ideas. Instead of just saying patients are wrong, let’s tell caregivers and researchers why treatment can seem worse than the RA to some patients. What do you think?
Postblog: With unrelenting RA affecting every joint and daily fevers, side effects would have to be horrific for a patient like me to say that RA treatment is worse than the RA. But, remember that benefits of treatment are undefined in the one-third of patients who are non-responders. Patients like this continue to take treatments out of optimism more than evidence, presuming that there is unseen benefit to treatment in spite of minimal improvement. As discussed yesterday, the consequences of not treating RA are obviously unfavorable.
Recommended reading
- Two Types of Rheumatoid Arthritis Medications
- Do Rheumatoid Arthritis Drugs Cause Cancer?
- Digging in to the 2011 American College of Rheumatology Scientific Meeting
- Kelly Young Wins WebMD Health Hero Award
Very interesting indeed. I am considered difficult to treat so this is a mixed bag of intellect & emotion for me. I’m currently on my second try at enbrel as the first time I started feeling better around the 16 week mark however, on the 17th week my body just shut the drug down, I ran 103 temp and my joints all began to swell & of course the pain increased. I’ve done the plaq, arava, metho, enbrel, humira and i’m sure i’m leaving out a couple. Nothing has either worked or worked significantly for a long period. Very short life. I suspect this morning I will be looking down simponi’s nose, at least that is what was suggested last time I spoke on the phone with rheumy’s office. We’ll see. My hair thinning or falling out, tummy aching, bowels issues, dry skin and so on are all secondary to the pain I’m in when my RA is in overdrive.
For me, I bear the side effects if and until they far out weigh the disease’s side effects. So long as they keep me upright, one foot forward & head up, i’m good. When they begin to give me little to none, off I go to try another.
Hugs
Coopy (Tammy)
I can understand if someone say’s the side effects is worse than the treatment. I was doing ok on mtx, but since the doc upped my dosage, my throat and bronchial tubes closed up and I was gasping for air. Called the doc and told me to stop it for two weeks. She’s worried cause I was throwing up, but that was from a virus I caught. I can deal with nausea and even throwing up if it is short lived. But having a serious side effect like not being able to breath, (I have asthma) is a different story. Best thing is to stop that treatment and try another, cause when you don’t take the meds the pain can be unbearable and if you end up not being able to use your hands or being able to walk is worse than the side effects. My dear friend reminded me, who has RA, that quality of life is better than an extended life of misery.
I hope you don’t Debra, but if you have those breathing symptoms again, it could be the RA itself and not caused by a side effect. RA can affect breathing in various ways so I hope they keep an eye on your lungs and asthma symptoms. Here’s a good medscape article about that: http://www.medscape.com/viewarticle/573647_6
I’ve also had what you describe several times due to cricoarytenoid arthritis (a common part of the RA where vocal cords immobilize, mentioned in the article). Sometimes meds can also be tried again if options run low too – so keep options open in the future. Good luck!
Hi Kelly,
I just came from my Rheumy visit and she took me off mtx and I will be starting Enbrel. I have to wait for tricare to approve the drug and then I will set an appointment up with her nurse to show me how to inject myself. I guess since I have tricare I do not qualify for enbrel support. Figures. Anyway, glad to be off mtx and hoping the enbrel will be ok. Am allergic to sulfa drugs so am limited to what I can take. I’m not afraid to take enbrel so hopefully the side effects will be minimal. Just hate the thought of injecting myself, but I will learn to deal with it as long as I get a portion of my life back. Thank you for your articles. They are very helpful, especially since I was just diagnosed this past summer.
Debra
Oh, how do I go about getting a sharps container and travel pack since I do not qualify for the enbrel support?
I got a sharps container at CVS very cheap. I originally got a travel kit from my dr – it was from the manufacturer – the reps give them out to docs sometimes. Good luck on the Enbrel!
I get my sharps containers from the pharmacy that mails me my Humira (and the enbrel before that). I just ask them to include one when I’m making an order. And the travel pack is just a small insulated cooler with a freezer pack, you can easily pick one up somewhere. The one they sent me is pretty bulky, like a smallish lunchbox.
Debra, I have Tricare also. I called enbrel support and they sent me a bunch of stuff, sharps container, travel pack with reusable cold pack, a video etc. I think you can sign up on their website also. good luck. I am also allergic to sulfas. I had injection site reactions from the enbrel after a few shots. It was a 5″ raised red area. I switched to injecting in the tummy area, and had no problem after that. The enbrel worked well for 6 months.
I am off everything but Gabapentin and Tramadol plus 2 mg of Prednisone. I can’t go any lower with the Pred, can’t take the pain. Will try MTX again in Jan and hope for no nausea or minimal at best. I seem to have intolerence for Sulfasalazine and Plaquenil. I did not have any problem with the MTX before and I was up to 20mg. But I do seem to have nausea off and on anyway, guess it is the RA. I can handle that, just not the unrelenting think I’m going to hurl at anytime feeling. Sorry but feeling that way 24/7 is not living to me. Now if I was in extreme pain all of the time, maybe I’d change my mind…
What is funny is that I have never been offered anything for the nausea. I understand that it is important to find out what is causing it. But if the benefit is there and nausea is the only side effect, why not use something for the nausea??
Hi Becky, be the squeaky wheel, ask for some help with the nausea. I use phenergan and although it made me drowsy at first it no longer does that and definitely helps. I also tried zofran but it gave me a terrible headache. Hope you get some relief:)
Thanks Lisa! I will have to remember to ask for something when I have my next visit. Something else that has been affected,…my memory!
Becky,
Have you tried taking Methotrexate with food just before bedtime? At night, when I have a full stomach, and then take the methotrexate, I find I can sleep through the first 8 hours of nausea. Starting with a full stomach actually helps minimize the nausea the next day as well. Works well for me. Hope it helps you too!
Good Luck,
Beth
Hi Beth. When I first started taking MTX that is how I did it. Did not have any problems other than a headache for months. Then they added sulfasalazine and plaquenil. That’s when the problems started. Then I started staying sick all of the time. Took me off of sulfasalazine and it wasn’t as bad at first. Then it got worse, actual vomiting the day after, then severe nausea for the rest of the time. I think I have developed an intolerance to sulfa.
What I am going to ask my doctor to do is start MTX again with no plaquenil(I went off of it a month ago). Then lets try adding Enbrel. I don’t care about injections at this point.
Thank you for your advise, that’s what I love about this site and all the hard work Kelly does. We get so much more information and ideas for so many things to help, it’s a wonderful tool as well as great emotional support. Just like I saw on another post to try the injections in your belly, got plenty of that thanks to Pred.!!
I think another group of RA patients that this applies to are those in the beginning, mild stages of the disease. We know from research and reading that hitting the disease hard in the beginning can be beneficial long term, but that is when treatment normally IS worse than the disease. I have very mild RA but a positive anti CCP, which of course means I might be in for the most degenerative type of the disease in a few years. I was all on board to take any DMARDs necessary to beat this. But it is hard to continue taking drugs that the doctors warn are “toxic” and that require monthly blood tests when I can function great without any medications (just mild joint aches). While on the meds I have bad side effects (mouth sores that caused me to have to drink my meals from a straw, severe nausea, stomach pain, etc). When one definitely feels worse on medication than off, then it is easy to say “this is not worth it” and stop the meds. But then psychologically you continually wonder if you are doing more harm to yourself long term by stopping treatment. What a hard disease both physically and emotionally.
Amy, I agree with you. I too am in the beginning stages and have only had a few flares in the one year since my diagnosis. I take Metho. and responded well to it for quite some time. I had hair thinning and nausea but a few months ago I started noticing the hair thinning less and not much nausea, but I was more achy than I had been in a while. My rheumy started me on Humira and I have had a cold and 2 other infections each one occurring a few days after administering the injection. Aside from this, I felt incredible fatigue…also something I didn’t feel at all. I’m not doing the Humira anymore..just don’t like the way it makes me feel. Going to rheumy soon and I guess I’ll have to discuss what’s next. You’re right…what a hard disease both physically and emotionally. Good luck to you.
In my humble opinion this would be the best time to try alternative treatments (At the beginning, with a mild activity). Diet change, stress reduction, etc. Then monitor closely. Check the site below, it has some interesting info on treatments used by 150+ RA patients.
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If you want to give diet a try I would check [LINK REMOVED]
I was diagnosed in Dec 2009 and did not want to start MTX, etc right away. I was looking for alternatives for sometime. The worst part was all the nagging and scary tactics used by all rheumatologists trying to convince me to start right away. One said that my hand would be all deformed in 1 year if I did not take MTX right away. Well, just hit 2 years and they are fine..
Best
Alberto
I’m sorry you feel the doctors were using “scary tactics.” The evidence is showing that early aggressive treatment is the best chance of remission so I guess they wanted to help you avoid disablity and long-term damage. It’s a very narrow “window of opportunity” for treatment. Most of us miss it by not being able to get diagnosed early enough. Most people contacting me have an opposite problem – trying to find drs who are up to date and willing to treat or diagnose earlier. We should each be able to decide for ourselves what we take.
I’m glad your hands are fine. You can read in the early posts here that my hands were not as much affected back in 2009. They are not so any more – there are lots of things I can’t do w/them. Some days they look bad and other days they look okay but they don’t work properly, especially the right one. And they hurt. I hope your hands stay fine for a long time.
So the bottom line would be that the early years when RA is milder would be the worst time to refuse to try treatment in place of diet or stress reduction. Where does the assumption come from that the diet or other lifestyle issues were poor in the first place in order for RA to begin. I’m confused about that since RA hits many of us at the prime of life when we are healthy and happy – or even children. It doesn’t seem to be borne out in the stories of patients.
If I had a dollar for every well-intentioned “natural cure”…wow! I have tried a lot of those over the years, in desperation. I think some people have remission and attribute it to herb A or diet Z. I was fit and active all my life, so it is insulting to blame the person, as though we brought it upon ourselves.
Just had an echo today and found that I do indeed have PAH. Been off Humira for 9 months due to chronic cough, but I think it’s the PAH causing all the respiratory problems. I can’t do most things I used to love, and now being short of breath all the time adds insult to injury. Will going back on a biological help slow the progression of the pulmonary symptoms? Of course I’ll ask my rheumie; just wondering if anyone has similar experiences.
Hi Alberto,
For many of us the beginning of RA is not mild at all. I went from completely healthy to severely disabled in just a few weeks. I already grew most of my own fruits and vegetables, eggs and poultry, and we even raised our own pigs…all strictly organic. We had done this for years and as soon as I was diagnosed I spent countless hours investigating RA and researching actual clinical trial data on both natural remedies, diet, and modern meds. You mentioned treatments that are used for 150+ RA patients but this is a very small number of patients compared with the millions worldwide that suffer from this disease. I didn’t have time to experiment with diet and supplements that were only helping a very small % of people; less in fact than the number of people that experience spontaneous remission. My RA was never mild even from the very beginning. You mentioned that ALL rheumatologists use nagging and scary tactics and this absolutely untrue and unfair to doctors like my own who have treated me with deep compassion and understanding, not to mention let me make my own choices without any pressure whatsoever. Each of us whether our disease is mild, moderate, or severe have to live with the choices we make in how we want to treat this wretched disease and the best way to do that is to become educated about RA so we can make informed treatment decisions and not fall prey to unproven arthritis ‘remedies’ and ‘cures’ that flood the the internet every day.
My 20mg/week methotrexate medicine is worse than my non-existant “flares”. It wipe me out for two days each week. I hate taking it becasue I know there goes 28% of my life when I do.
Is there anything else you might try, like Enbrel? I was on methotrexate for 1 or 2 years, hated it the whole time. It was only mildly helpful, and I had intense nausea and fatigue, worst in the first 2 days after taking it, but present always to some degree. Here’s hoping you might find a better tolerated medication…
This is a great series Kelly – thanks. In some instances, we skip treatment of our RA due to other health issues. I see often that folks have to stop meds because of surgeries, positive TB skin tests, liver issues. Sadly, my RA was responding relatively well to methotrexate for 10 months until my liver went toxic. I’m managing now with prednisone and pain meds, while I undergo antibiotic TB treatment to clear the way for biologics. Because I have a very high tolerance for pain and a rheum who believes in pain meds, I actually feel much better without the RA meds.
But we all must find our individual balance – disease aggression, quality of life, overall health, function – all of these must be weighed when choosing the right options for each of us.
For me, it’s very important to look ahead when making treatment choices. Sure, my immediate quality of life is improved if I forego treatment. But I feel I owe it to my children to try anything that will prevent them from having to care for me in later years.
I have moderate RA, the kind that waxes and wanes. On a good day, I have joint pain in 5 or 6 joints, but I can get around okay as long as I take care with myself. On a bad day I can get up and be upright as long as no one asks anything of me. I’m currently off all my RA meds (except supplements). My doctor and I reached that decision gradually and with great trepidation, but the sinus/tooth/wound infections were getting so bad and so frequent that they were no longer tolerable. The doctor gave me plenty of prednisone for flares, naprelen for pain, and an open appointment in case everything gets too bad. It’s been mostly all right the last few months. I’m so relieved not to have had any infections at all the last couple months. I go back in January to discuss new med options, as I’ve been moving slower and having more and more pain as time goes on. RA is sure a roller coaster.
I think it is important to remember that sometimes what may seem to be a side effect might actually be an RA symptom. Although the meds can cause them too, things like body aches and fatigue can also be RA rearing it’s ugly head. For me RA hit hard and fast almost 2 years ago and I had little response to the methotrexate so a biologic was added less than 3 months later. I’ve had chronic nausea for months so this past October we added sulfasalizine to the mix and in November I took a holiday from the methotrexate….turned out it wasn’t the metho causing the nausea, but since my RA is staying well controlled with the biologic and sulfasalazine I am staying off the metho for the time being. The nausea still comes and goes with no meds seeming to trigger it, I am beginning to think it is more disease process than medication. It is really important for us to realize that RA is systemic and can affect more than our joints, we have to be our own investigator sometimes when trying to differentiate between side effects from meds or symptoms from disease.
Lisa, that is such an important point!! Thank you. I often see patients complain of symptoms that sound more like RA to me than the side effects of meds. It can be very tricky and I’ve been fooled myself by this evil disease. I had some problems several months ago that I would have blamed on mtx in the past – but I was not taking it at the time either. just like you, I learned that while I don’t want to believe it, my own body was causing it – in one case my RA and in another, my thyroid.
I agree with Tammy that the trade off is most evident when one is not that bad off with RA symptoms. Once I get into a painful flare, I’ve found I will do just about anything to make it stop. I have some internal line though where I just know the med is making me more miserable with side effects than helping me.
I’ve had all the side effects over the 30 yrs with RA, except hair thinning. Nausea, constipation, internal bleeding, blood thinning, easy bruising, headaches, dry mouth, every stomach / intestinal pain imaginable, dizziness, blurry vision, etc etc. It sucks.
I was on mx for two years when within a few minutes after giving myself injection I flushed bright red and my heartbeat started racing. The next dose was done at doctors same thing happened. Doc stopped mx I am not sad bout this as mx made me feel like I had the flu for at least two days.
Prednisone was for me totally worth the side effects for a number of years. It allowed me to continue working, exercising and having a good quality of life. I always said to myself, “eyes wide open”, knowing the possible problems.
However, because of changes in my other meds, I ended up on much higher Prednisone, and the side effects and adverse effects are now exacting a much higher price. And I’m having trouble even slo-o-owly tapering the dose without being almost bed-ridden. But for me, quality of life is key.
The issues and tradeoffs are so individual, depending on our families, where we are in life, our financial situations, the severity of the disease. We all should get major kudos for making the difficult decisions we have to make all the time!!
hi Kelly,
Another way that the treatment can be worse is if there is a great risk of major infection or death as a result of taking the meds. My doctors have decided after several years of rapid progression of the disease, and now seeing my spine fusing itself, that it is time for Enbrel…But because I have immunity problems and a history of numerous life-threatening infections; they have warned me of a huge risk of infection and possibly death. My ID doc has told me that to take Enbrel or any other biologic is a “death sentence”…Makes me really take pause in making this decision! My initial response was to just go for it. But have been having second thoughts about it…Certainly it requires more thought and prayer.
I can’t believe a doctor would use that phrase about a therapy. I believe you – I’m just saying it’s incredible. Risk-benefit ratio, yes. But “death sentence”? That’s so emotionally loaded that it would make it very difficult to think clearly about options. I will pray you know what’s the right thing to do for you.
I’ve been on just about every medication available, including biologics, anti-inflamms, imuran, cyclosporin, methotrexate….the list goes on and the side-effects have been numerous and some very dangerous. However, I still take a lot of meds and HOPE that they may make a difference. I feel like I take too many, but I have faith in my doctors in that the meds are somehow slowing down the damage and are helping me to live a good life. I am in much pain every day and am upset about my mobility which is getting worse, but I still can do some things with my family and for that I am grateful.
I wanted to add that I have had remissions before (4 in 30 yrs), for a year to three yrs at a time, and hope to again (though the older I get the less they have happened). The meds with side effects help keep my joints and rest of my body from excess damage, so that if I *do* find a med that works wonders, my body isn’t totally destroyed at that time.
Looking at this long term, with all the developments in RA just in the past decade, we can hold out hope that making it through all these meds and side effects will be worth it if it keeps our bodies in a bit better shape so when that amazing thing comes along, and we’re able to use our bodies better, there is more of an intact body to use.
I sometimes wonder what would happen if I stopped taking the Plaquenil and MTX, but not enough to actually do it. The only noticable side effects where the first two weeks on MTX (I spent 2 days mostly in bed or on the couch and in a total disfunctional fog for the remainder). In the 5 months since my first Rheum visit I started with Plaquenil with immediate effect that quickly dropped off. Then on to 7.5mg of MTX that didn’t seem to do anything until I got to 15mg and then quickly dropped off it’s effectiveness. I’m up to 20mg and next month will be starting on the biologics. The RA is in most every joint, but thankfully not puffed up beyond the synovitis that is visible in all knuckles or debilitating painful, though each week gets a little worse. Before all of this I had never taken more than an antibiotic or advil and now I have a small pharmacy of drugs with awful warnings.
The Rheum has given me the choice between Humira and Enbrel. The biggest difference between the two that I can see is that Humira is less frequent injections. Any thoughts or experience that would point me in the right direction would be appreciated.
Hi Chris,
I like it when they let you help choose because you own the choice and may be more committed to it working. Both of those are TNF-alpha inhibitors. You can google that if you really want to get into it. They interfere with the immune cell called tumor necrosis factor alpha. But the molecules are not identical because they were created by different methods. Humira is not quite as old as Enbrel, but is a “fully humanized” anttibody – they have the same record of effectiveness – but in some people one or the other works better. There is no way to know which Biologic will work on which patient YET. It is one of the “holy grails” of rheum research. Humira is more convenient because it’s bi-weekly since it can last longer in the body. Also, it means the dose can be increased if the dr wants to switch you to 10 days or 7 days in some cases. Some say injection site reactions are more common with Enbrel. But Humira stings more if you use the Pen form. Hope this helps. Most patients call it a “crap shoot” though. Good luck!
Hi Kelly, thank you for the wonderful site and all of the time and information you have put into it. I have read through most of it in the past 5 months. As you say it sounds like a “crap shoot” to me as well. I’m leaning toward the Humira due to less shots, I hate needles. My Rhuem seems to be up on current medications (thankfully) and has taken my word for things, achillies tendonitis plus the synovitis in my knuckles (hands and feet) due to being sero-negative 5 months ago. He more recently ran additional tests looking for sjogren’s (horrible dry mouth and eyes) and that came back positive (plus symetrical progression into most joints), as such he is comfortable saying it is RA with Sjogren’s (instead of PsA, as was his first guess).
I don’t have experience with Humira, but I do with Enbrel, having started it about four months ago. I use the SureClick Autoinjector for Enbrel. I let the autoinjector come to room temperature and ice the site for a few minutes before injecting. Sure, it stings and/or pinches for a few seconds, but you never see the needle and it’s easy to do, even for someone whose hands are now clumsy. Because Enbrel is beginning to make a difference for me, I look forward to injection day!
I recently started Humira; it stings during injection, though only briefly. I was previously on Enbrel, self-inject not pen, and it did not sting. But for the trade-off of injection frequency, Humira might have the edge. Enbrel worked great for me 3 years ago, then I had a problem with blood counts, and had to stop. Humira so far after a month has had no effect.
I’d add one more “not worth it” group: when the insanely expensive treatment doesn’t work, regardless of how little the side effects are. Was on Orencia for six months, which did absolutely nothing, as near as I (and my sed rate and CRP) could tell. A 15% copay for something that does nothing is hard to justify.
Finally got on Actemra, which DOES work for me. A lot easier to justify coughing up several hundred bucks a month for something that actually works.
Looking back, I wish I’d tried to get the rhuemy to switch drugs earlier, instead of taking the “well, let’s give it one more month” approach month after month.
Neither one worked for me, Jeff. But I’m so happy you found the right one! That is a very good addition to the list!
Oh the side effects and taking drugs to take drugs…my life has become quite the balancing act. Humira migraines for ten days straight were not worse than the RA but did make my life unmanageable. Orencia makes me nauseous, I have injection site irritation, my poor skin itches like a fiend, and I’m losing some hair but not bad, so far… Mostly, the results are currently spotty, I have had good days and bad days. I’m okay with this, you know, because before I had no good days. I can live with my side effects if it produces good days, and if it is not adding more pain to the mix.
However, if this does not work then Remicade is next on the list.
I guess what I’m saying though is pre-RA if someone had told me those symptoms I’d’ve gasped and said, yeah, no way. Now? Oh yes please, I will gladly take them and their side effects for my good days. They are worth it, to me. But migraine? Oh no, no way, no how.
I cannot tolerate most meds. Now, lucky to get some help from opiates but know some mds look at me with suspicion & I have more pain to look forward to as DEA/FDA/govt war against good pain doctors/patients & as my inflammatory arthritis (etc!) advance unchecked. Why only Opioids?? NSAIDS-ulcer, GI pain&bleeding,rebound headache. Plaquanil-weird full body rash about 3 weeks in. MTX or methotrexate- low dose makes me feel prodromal & worsens already near intolerable fatigue. Sulfasalazine-cluster headaches or I believe aseptic meningitis & worse fatigue…especially after my IVIG infusions. Steroids-osteopenia & severe adrenal insufficiency. I & my rheumatologist agree due to TB&mycoplasma exposures,etc with my CVIDS the injections are too risky. I am circling the drain and not much can be done so why wont they make me more comfortable instead of ignoring my nonmalignant (hah)pain? Hard to type on phone…hope not too many errors. Thanks4 letting me vent
Has anyone heard of Apo-Meloxicam?? Im am on this at 7.5mg twice daily. They dont’t work so great. I was on them for about 2-3 months straight and they did nothing for me. Its hard to get into my Rheum to get appointments to change it, so i take it only so often when i really need it, as well as IBprofens, this has been going on for several months now as well..My Rheum says that should this not work then she would give me a higher does of this meloxicam, but in an injectable form. I hate needles! Im a little scared. But im a 31 yr old mother of a 4 yr old and a 6 yr old …my arthritis is painful continually and my toes and fingers are shifting and stiff. I also work full time as a computer tech and i am constantly on the computer typing away; i have to say i am terrified of my future…I dont want anymore physical deformities even though it may be inevitable, should i or can i say no to certain meds my doctor suggests at this point?? Thank you so much Kelly for this site, in the last weeks since finding it, and reading others replys and comments have been helping me. I have felt broken and scared and as if i was the only one with this disease, with a husband that does not understand and thinks i am “wimpy”, and lazy and that i complain too much. Thank you.
Ps. Is there any advice out there on sleeping. My hips and back have become brutally painfull in the last several weeks, making sleeping hard.
Yes, I’ve tried that too – it is an anti-inflammatory, sometimes called NSAIDs. It is also called mobic. It did not help me at all either. But you really shouldn’t take it with ibuprofen since they are the same type of drug (NSAID also). They won’t help to avoid deformity because they only help reduce inflammation. But some of the modern treatments such as methotrexate can help slow disease activity so I hope your rheum doc is also talking to you about that. There is much more on this site about treatments and yes, about sleeping. Do you see on the right near the top of middle of the page where it says: Tags: List of topics? Click on the little black arrow and you’ll see all kinds of topics pop up for you to click on – such as sleep and treatments. One thing you could try for you sore hips could be taking a feather bed or duvet and putting that over your mattress for extra softness. It helps me to get comfortable. But if you can get the medicines straight that will also make a big difference.
PS: you are not wimpy or lazy because you feel broken and scared. Those are normal feelings with this brutal disease. You are being brave to keep working and typing!!! And taking care of your little ones!! Your husband needs to read some articles and comments on here from other patients. I hope you can see your doctor and get something that helps soon.
I’ve been taking Plaquial 2 mos now, the 1st month my lips swelled and I got a rash, my primary care sd stop taking it, (I am allergic to sulfas), then went and saw RA dr consult with him and because of my limited insurance that dr sd for me to keep taking it. During the first month when I took it with food I would get diarrhea, they told me take it with food, I tried and same thing but vomitting as well. I take benedryl to try and ocunter act allergic and pepto but does this seem even remotely normal. I really havent noticed any help to the issue.
Soon after my diagnosis they started me off on plaquenil – which did nothing.
I’ve been on 17.5mg methotrexate for about three years now. It seems to work reasonably well along with the prednisolone. I’ve tried several times to get off the steroids – even more important now that I officially have an osteoporotic lumbar spine! Currently taking 2.5/2.5/5mg and hoping to get rid of the 5 sometime soon.
One thing I did eventually notice is that how sick I feel on the methotrexate depends on where I get my prescription filled.
One pharmacy gave me a generic type which made me nauseous and completely wiped out for three days. I now go to another place which gives me a branded type which gives me very little nausea.
I’m sorry to read about so many of you having such awful problems with this ghastly disease – but I’m glad I’m not alone.
I hope you’ll excuse a little rudeness – in our house we refer to it as RFA. You can guess what the middle letter stands for!
I started my treatment with Plaquenil about a year ago. Within two months my depression had gotten much worse. I tried a variety of different antidepressants with little effect. After 9 months I stopped the Plaquenil and my depression improved. So then I started on Sulfasalazine and I’m afraid the same thing is happening. Both meds helped with pain and inflammation – but I don’t know if it’s worth it to have to deal with awful mood. I feel really stuck. I’m wondering if anyone else has had this experience?
I have been diagnosed with RA for about 2 years. Once diagnosed, it became clear to me it was active at least 2 years prior with no doctor “getting” it. Grrrrrr. (This includes a trek to Mayo Clinic/Phoenix!) I’ve tried mtx (could not get out of bed 6 days of a week); tried Enbrel (great for 3 mod, then quit working). Next for me was the suggestion of Orencia transfusions. Never got Orencia or insurance approval (lost about 6 mos there). Have been on pred (best relief yet) for a couple of years but weaned from it as best I can, and am on only alternative supplements and techniques now (biofeedback, NeuroCare, and dietary restrictions) under the care of two physicians and the watchful eye of my rheumy. Frankly, I’m not sure anyone know really what to do with us RA folks. Dif approaches seem to work for some, not for others. At this point I am going with alternative (non-med) approaches….as it seems down the road, the prescriptions seem to leave us with additional problems and we still have the RA. Currently, I am thinking, with my chosen approach, that down the road I might (dammit) still have the RA but will not also have the lovely side effects the meds might offer.
Hi to all! I am new here; trying to read as much as I can first, but I decided to write a little here – like this topic.
I have very advanced RA for many years; I don’t have many parts of my body which is not severely affected by RA, heart and lungs included. I had many reconstructive surgeries of the elbows, knees, shoulders. I also had couple serious spinal fusions with titanium, rods and screws (but this is due to accident, not RA) and I am under Pain Mgmt DR care. I live 24/7 on strong pain medication. You would think that strong Pain meds would help with RA pain, but due to tolerance and years on them, I dont get much help anymore.
As bad as it is for me to live life with RA, pain and every joint swollen and red, I hardly tolerate RA treatment. I feel like to all issues I have to live with, all the side effects from RA drugs adds and makes my life even worse. When I used shots of Enbrel, Humira, Simponi, Cimzia and practically all biologics – I was just tired. Nausea wasn’t as bad and I was happy. The thing is: none of them put me in remission, I had 0 help from them. Only Orencia IV infusion worked for a very short time, rather than that, I didn’t get any relieve.
I forgot to mention that being on MTX made me very sick. Nausea, exhausting, fevers, lifelessness. I lost 17 pd in first month and looked so bad that when my RA Dr saw me, she took me off it immediately.
When drugs were changed to B-cell drugs (Rituxan) I had very big hopes. But the first treatment went very tragic and I almost lost my life. Thank God for a great team of doctors and nurses at Hospital for Special surgery in NYC who worked hard on saving me. I am not allowed anymore to be on Rituxan, and on 3/27 I will try another IV infusion called Actemra. I hope, boy do I hope, that this time I will be lucky.
But… if I will have to deal with being so sick again (like MTX made me), I am not sure I will continue my treatments.
Someone here said that we refuse treatment if treatment is worse than symptoms of RA. I disagree with it, b/c my RA symptoms are severe, I hardly walk and most of my time I am in bed due to unbelievable exhausting and pain in every tiny part of my body. Otherwise I would never go on such harsh drugs, I wouldn’t want them in my body just b/c I have RA. But due to so many damages RA done to my body, due to low life quality, I am willing to try anything and everything. My concern is why do I add more misery and terrible side effects to my life? Dont we go on drugs to improve our lives, not to get more sick, right?
I asked my RA about that; she is an excellent specialist, who told me that if we don’t stop progression of RA, I will not last long even though I am only 57. I get this, but do I want to live longer in misery and deal not only with the disease, but also fight drugs side effects every minute of my life? Quality or quantity? This is my dilemma.
I am 3 weeks now after dangerous episode with Rituxan IV. But I am still on Prednisone, Benadryl, and believe or not, have to deal with peeling skin, severe itching, ulcerated blisters (blisters not there anymore, but left little ulcers which not healing). I still cant touch my scalp and ears, still hurt a lot – so what am I doing? Is this good? Is this worth it?
I wish someone here would help me with it. I worked in hard field all my life: finance on Wall Street, I was the one to give advices. And now I am at lost, feel so lonely in all this. I have great support of family and friends, but they don’t know what this all is about. I don’t like to put my problems on someone else’s shoulders and discuss something people will not understand.
This is why I am glad I found this place where we all know what RA is about and hopefully it will help me to find the answers.
Thank you for reading such long post, sorry.
All the best to you all
Linda 57
I have taken 20 mg of methotrexate for 2 years now. I had to have emergency gall bladder surgery. While in the hospital they found my blood work to have higher than normal numbers for ceatinin. They kept me in the hospital for extra days to flush out my kidnesy. One kedney doc felt that it may be from the methotrexate, and aleve. The other specialist thought it was combo of that and being dehydrated. So for the next 2 months I can only take tylenol for the achy pain? I go to the Rheumy in august. You don’t want to take the strong meds but you don’t want RA to get worse and the hurt to continue. A good rheumy checks your blood work all the time. So you have to throw everything into the wind and trust your Doc…
I was getting pretty good results from Enbrel when I started getting strange neurological symptoms. I started getting flashes of light in my visual field. It was looking through gold glitter all the time. I felt like I was living in a snow globe filled with gold glitter. Then my speech began to become increasingly slurred and my balance was very bad. I nearly fell several times in front of my class. Since I am an English teacher, the slurred speech made me crazy! Words are what I do for a living, and I could no longer pronounce them. I began to wonder if I had MS. When I went to my GP he also thought that it was MS. I had an MRI and they found no lesions in my brain, but the symptoms were very much like MS. The second neurologist I saw at the University MS clinic said he had seen 10 other patients with symptoms just like mine and that all 10 of them were on Enbrel. Obviously I discontinued it and it took several months for the symptoms to clear up. My vision has improved dramatically and my speech is now normal. My balance has also improved. Of course, without the Enbrel or the Plaquenil my pain has increased, but we have to wait for the drugs to clear from my system before adding anything new. I have been able to add methotrexate and predisone and they help, but I had been off the prednisone for two years and would like to be off it again. My mother had severe RA and in her day steroids were her only choice and I saw the results of those severe side effects. But I am grateful that I had access to a doctor who listened and knew exactly what we were seeing.
I don’t know for sure where to post this, however what I want to say is: thank you for this site. I was diagnosed 31 years ago. I have often felt that people think I’m just a big baby, after all I look fine. But I’m not fine, I live with pain every day of my life. I want to be normal again. I want to be as busy as I used to be. I want the pain to end. Your site has encouraged me and I want to say thank you just for being ther and giving so much info.
thank you Becca. Many of us have felt that way too, just wanting the pain to end. And people to stop making it worse by thinking we are just being a baby.
Just started taking metho. Now my livers enzymes went out the roof now not sure what is next 🙁
I was diagnosed with RA 14 yrs ago. I’ve been on almost every biologic out there. I did get relief when I was on Remicade but it stopped working after 2 yrs. My Rheumy wants me to try Rituxin IV. I’m very leery of trying this medication. The side effects look worse than RA.
Has anyone been on Rituxin IV ? Can you give me positives and negatives?
I do realize all medications effect each person differently. I’m just trying to make an informed decision on taking Rituxin.
Thanks
Jane