Rheumatoid arthritis treatment?
May 17, 2011 12:38 PM Subscribe
Rheumatoid arthritis: info about treatments, especially methotrexate?
My wife has been tentatively diagnosed with rheumatoid arthritis. Prednisone has helped a lot with her near-constant pain, but you can't stay on that stuff forever, and it doesn't deal with the underlying problem. Her rheumatologist wants to start her on a DMARD: methotrexate, etanercept, or leflunomide, with a preference for the first, and she wants my wife to read up on them and decide. But my wife is afraid of the side effects of all the drugs, and particularly of the nausea associated with methotrexate (which otherwise does seem to be the best choice).
Have you taken drugs for RA (or do you know someone who has), and are there any you think are particularly worth recommending or avoiding? In particular, do you have information on how common nausea and hair loss are when taking methotrexate? (I have checked previous AskMe threads; this has helpful information, but doesn't address the specific issue I'm asking about, and this is specifically about methotrexate but didn't really get answered and is seven years old to boot.)
My wife has been tentatively diagnosed with rheumatoid arthritis. Prednisone has helped a lot with her near-constant pain, but you can't stay on that stuff forever, and it doesn't deal with the underlying problem. Her rheumatologist wants to start her on a DMARD: methotrexate, etanercept, or leflunomide, with a preference for the first, and she wants my wife to read up on them and decide. But my wife is afraid of the side effects of all the drugs, and particularly of the nausea associated with methotrexate (which otherwise does seem to be the best choice).
Have you taken drugs for RA (or do you know someone who has), and are there any you think are particularly worth recommending or avoiding? In particular, do you have information on how common nausea and hair loss are when taking methotrexate? (I have checked previous AskMe threads; this has helpful information, but doesn't address the specific issue I'm asking about, and this is specifically about methotrexate but didn't really get answered and is seven years old to boot.)
Many people I know with RA have been helped by methotrexate. Many of them have also experienced all of the side effects, especially the nausea.
I took entanercept (Enbrel) for a year for AS. When you're reading about these things, the biologic drugs, including TNF-inhibitors like Enbrel and other drugs actually made by cells rather than chemical reactions, are frequently discussed separately from DMARDs (except on Wikipedia apparently). I had essentially zero side effects from Enbrel. Theoretically, they increase susceptibility to infections but I haven't had serious infections while on biologic drugs. I'm on Humira (adalimumab) now, and it works better for me than Enbrel did. In general, for all of these drugs, some work better for some people than others and some cause more side effects for some people than for others.
posted by hydropsyche at 12:54 PM on May 17, 2011
I took entanercept (Enbrel) for a year for AS. When you're reading about these things, the biologic drugs, including TNF-inhibitors like Enbrel and other drugs actually made by cells rather than chemical reactions, are frequently discussed separately from DMARDs (except on Wikipedia apparently). I had essentially zero side effects from Enbrel. Theoretically, they increase susceptibility to infections but I haven't had serious infections while on biologic drugs. I'm on Humira (adalimumab) now, and it works better for me than Enbrel did. In general, for all of these drugs, some work better for some people than others and some cause more side effects for some people than for others.
posted by hydropsyche at 12:54 PM on May 17, 2011
My mom has RA & has been in treatment for the last decade on a methotrexate regiment. She doesn't mention nausea or any other side effects from the methotrexate but does generally have a "tired" day after her dose. Her treatment has been remarkably effective, however, in enabling her to lead an active life. Prior to diagnosis/RA management her joints were very inflamed to the point of limiting her mobility. Post diagnosis and with her treatment she does very well at continuing to lead an active life with greatly reduced inflammation.
She also didn't lose her hair tho it may have thinned somewhat - or so she says (not apparent to me).
Clearly I'm not an expert by any means but I was anxious about the prospect of my mom going on the methotrexate but it's turned out to be something of a good thing for her.
posted by countrymod at 1:02 PM on May 17, 2011
She also didn't lose her hair tho it may have thinned somewhat - or so she says (not apparent to me).
Clearly I'm not an expert by any means but I was anxious about the prospect of my mom going on the methotrexate but it's turned out to be something of a good thing for her.
posted by countrymod at 1:02 PM on May 17, 2011
I will say it didn't seem to do a ton for me, though, but I am much, much more sensitive to diet than anything, and since changing my diet have been able to drop the maintenance-dose prednisone and the Plaquenil. Feel free to memail me for resources if you like.
Same. I was involved in a methotrexate drug study for a year, and had no side effects at all. It also didn't do much of anything to help or hinder my RA, though. I changed my diet ( no flour, more raw ) and was able to stop my low-dose prednisone and celebrex and haven't needed them since.
posted by iconomy at 1:32 PM on May 17, 2011 [1 favorite]
Same. I was involved in a methotrexate drug study for a year, and had no side effects at all. It also didn't do much of anything to help or hinder my RA, though. I changed my diet ( no flour, more raw ) and was able to stop my low-dose prednisone and celebrex and haven't needed them since.
posted by iconomy at 1:32 PM on May 17, 2011 [1 favorite]
Best answer: I've got a close friend who went on a year-long antibiotic treatment regime with her RA specialist and GP. The thinking is that some kinds of RA may be caused by deep-set joint infections (including mycobacterial infections)--and while it's not something everyone should pursue--my friend has been completely cured. It's worth investigating, at the very least: http://www.riversideonline.com/health_reference/Arthritis/AN01358.cfm
posted by yellowcandy at 1:52 PM on May 17, 2011
posted by yellowcandy at 1:52 PM on May 17, 2011
My friend is on methotrexate, and her hair thinned a lot so she keeps it quite short. But it has helped her stay active. She has had a couple of very severe flare-ups.
posted by theora55 at 2:22 PM on May 17, 2011
posted by theora55 at 2:22 PM on May 17, 2011
I've been on methotrexate for years now (for psoriatic arthritis, not RA). Never had any side effects from it. Bear in mind it was originally introduced as a cancer drug, and that the doses for arthritis are lower than they are for cancer treatment.
The only downside to methotrexate I've found is two-fold: not being able to drink as much/whenever I want to, and having to have quarterly blood draws to make sure my liver function is still okay. Other than that, it's been awesome.
I've also been taking etanercept for a couple of years now, also with no real side effects. I recently had an infection, which meant that I had to go off it temporarily, but it's been amazingly effective.
posted by asterix at 3:18 PM on May 17, 2011
The only downside to methotrexate I've found is two-fold: not being able to drink as much/whenever I want to, and having to have quarterly blood draws to make sure my liver function is still okay. Other than that, it's been awesome.
I've also been taking etanercept for a couple of years now, also with no real side effects. I recently had an infection, which meant that I had to go off it temporarily, but it's been amazingly effective.
posted by asterix at 3:18 PM on May 17, 2011
Best answer: As someone who has suffered miserably from an auto-immune disease, and found amazing relief from conventional medicines, may I suggest your wife at least consider the drugs her doctor is suggesting, which work for many many people, before trying unproven therapies like the antibiotics you've marked as best answer. Long-term use of antibiotics has the risk of all kinds of really unpleasant side effects.
posted by hydropsyche at 5:47 PM on May 17, 2011 [1 favorite]
posted by hydropsyche at 5:47 PM on May 17, 2011 [1 favorite]
Best answer: If you are interested in looking into alternative treatments for RA, I encourage you to research a nutritional approach as well. I have a friend who started the Eat To Live diet about 18 months after being diagnosed with RA and within a month was pain-free and off all of her prescription drugs.
I know that sounds incredibly hard to believe, and I always feel weird recommending EtL here because no one ever jumps in and agrees or disagrees with me about it and I end up feeling vaguely like a cultist or something, which is why I'm not even going to link to anything specific. I just couldn't let this go by without sharing after seeing how much the quality of live improved for my friend.
Please feel free to memail me if you want further info (or to yell at me or de-program me).
posted by Brody's chum at 9:56 PM on May 17, 2011
I know that sounds incredibly hard to believe, and I always feel weird recommending EtL here because no one ever jumps in and agrees or disagrees with me about it and I end up feeling vaguely like a cultist or something, which is why I'm not even going to link to anything specific. I just couldn't let this go by without sharing after seeing how much the quality of live improved for my friend.
Please feel free to memail me if you want further info (or to yell at me or de-program me).
posted by Brody's chum at 9:56 PM on May 17, 2011
Response by poster: Thanks, everyone! I marked yellowcandy's as best answer because my wife liked it and printed it out to show her doctor (she's been worried she may have an infection that's not being diagnosed); I've marked a couple of others on my own hook because I think they provide a good balance for when we (and others) revisit this thread. I'll try to remember to report back if we come to any conclusions ourselves based on what develops in the next few months.
posted by languagehat at 12:36 PM on May 18, 2011
posted by languagehat at 12:36 PM on May 18, 2011
You also might want to check out this website, Rheumatoid Arthritis Warrior, written by a patient advocate who has it.
posted by Maias at 4:26 PM on May 19, 2011
posted by Maias at 4:26 PM on May 19, 2011
Response by poster: To give a quick update: My wife finally found a rheumatologist she likes (not only did he tell her he'd never had a patient vomit from methotrexate, the potential side effect she was most afraid of, he said "I'd rather die than vomit, myself," which is exactly how she feels) and so far she has had no discernible side effects from the course of methotrexate she started yesterday (yes, it's early, but it's pretty damned encouraging when it's been such a scary looming factor). Thanks again, and I'll probably provide another update in the course of time, for the benefit of anyone else in a similar situation.
posted by languagehat at 11:30 AM on June 10, 2011 [2 favorites]
posted by languagehat at 11:30 AM on June 10, 2011 [2 favorites]
Response by poster: Another update: Her rheumatologist has been weaning her off the prednisone, and she's down to 5 mg/day now, which is producing noticeable effects: she's feeling more stiffness and some pain. But the doctor is very pleased with how she's coming along and says her body should start compensating for the lower dose; the important thing is that she's not showing any side effects, and the methotrexate is doing its job.
posted by languagehat at 8:37 AM on September 10, 2011
posted by languagehat at 8:37 AM on September 10, 2011
I've been on methotrexate for going on a year now. In my experience the more they increase it (and they will increase it) the more likely you are to have side effects. I fretted endlessly before going on it for fear of being sick and losing my hair. I've not been sick at all but I've had some thinning of my hair in the front of my scalp. Not noticable to others because I have short curly hair. Some believe increasing the folic acid will stop that.
I'd originally tried Plaquenil and suffered temporary hearing loss and permanent ringing in my ears so I stopped that.
Good luck to your wife.
posted by july1baby at 7:06 PM on November 25, 2011
I'd originally tried Plaquenil and suffered temporary hearing loss and permanent ringing in my ears so I stopped that.
Good luck to your wife.
posted by july1baby at 7:06 PM on November 25, 2011
Response by poster: Thanks very much; that's good (though depressing) to know.
posted by languagehat at 8:26 AM on November 26, 2011
posted by languagehat at 8:26 AM on November 26, 2011
Best answer: I hated methotrexate. I got mouth sores, exhaustion and nausea and it didn't work very well.
However, enbrel worked great for the first year. I do get sick more frequently, and in spite of handwashing like a maniac, I get staph or strep skin infections multiple times a year.
And be, very, very careful of steroids. Once my doc prescribed a steroid mouthwash for some apthous ulcers, I started getting oral thrush, and now I can't be on ANY immune suppressant without getting a whopping, horribly difficult to treat and painful oral thrush infection at least once a month.
If she goes on immune suppressants, it would be wise to find a GP who has experience with AIDS patients, even if your wife doesn't experience bad immune-suppression side effects right away. My regular GP screwed me by prescribing a steroid mouthwash when I was on Enbrel, and then she had no idea how to treat it (a one day prescription of antifungals won't work. You need at least five days of pills, or more, combined with an antifungal mouthwash).
Medicare won't cover Enbrel, so I had to switch to Humira, which didn't work for me at all. Now I'm trying Remicade. Anyway, my point is that there are options, so if the side effects from one drug are too bad, try a slightly different one. If the nausea from methotrexate is too much, try Enbrel, etc.
And in spite of the icky side effects, I looooove my immune suppressants. They mean the difference between functioning and not. I'll take whatever help I can get. (Sorry, I know this question is half a year old, but adding my advice in case it helps other people who come looking). FWIW I have psoriatic arthritis, another kind of autoimmune arthritis.
posted by thelastcamel at 12:21 PM on December 17, 2011
However, enbrel worked great for the first year. I do get sick more frequently, and in spite of handwashing like a maniac, I get staph or strep skin infections multiple times a year.
And be, very, very careful of steroids. Once my doc prescribed a steroid mouthwash for some apthous ulcers, I started getting oral thrush, and now I can't be on ANY immune suppressant without getting a whopping, horribly difficult to treat and painful oral thrush infection at least once a month.
If she goes on immune suppressants, it would be wise to find a GP who has experience with AIDS patients, even if your wife doesn't experience bad immune-suppression side effects right away. My regular GP screwed me by prescribing a steroid mouthwash when I was on Enbrel, and then she had no idea how to treat it (a one day prescription of antifungals won't work. You need at least five days of pills, or more, combined with an antifungal mouthwash).
Medicare won't cover Enbrel, so I had to switch to Humira, which didn't work for me at all. Now I'm trying Remicade. Anyway, my point is that there are options, so if the side effects from one drug are too bad, try a slightly different one. If the nausea from methotrexate is too much, try Enbrel, etc.
And in spite of the icky side effects, I looooove my immune suppressants. They mean the difference between functioning and not. I'll take whatever help I can get. (Sorry, I know this question is half a year old, but adding my advice in case it helps other people who come looking). FWIW I have psoriatic arthritis, another kind of autoimmune arthritis.
posted by thelastcamel at 12:21 PM on December 17, 2011
Response by poster: Thanks very much! Half a year is nothing; my wife is going to be dealing with this the rest of her life, and (as you doubtless are well aware) there are a zillion different ways both the disease and the drugs can affect you, so the more angles we get on it the better. I'm going to send her your very informative comment now.
posted by languagehat at 4:53 PM on December 17, 2011
posted by languagehat at 4:53 PM on December 17, 2011
Oh, about the mouth sores: did your wife's doctor give her a prescription for folic acid? My rheumatologist prescribed a large dose for me along with the methotrexate; if I skip the folic acid, I do get mouth sores. As long as I stay on it, though, no worries.
posted by asterix at 5:47 PM on December 18, 2011
posted by asterix at 5:47 PM on December 18, 2011
Response by poster: She has not (I am relieved to be able to say) had a problem with mouth sores, but if one arises I'll keep that in mind.
posted by languagehat at 10:56 AM on December 19, 2011
posted by languagehat at 10:56 AM on December 19, 2011
This thread is closed to new comments.
I will say it didn't seem to do a ton for me, though, but I am much, much more sensitive to diet than anything, and since changing my diet have been able to drop the maintenance-dose prednisone and the Plaquenil. Feel free to memail me for resources if you like.
posted by restless_nomad at 12:46 PM on May 17, 2011