Comparing Risks and Benefits of Rheumatoid Arthritis Medicines
Everything has risks and benefits
Frequently, people ask me about whether it is safe to take Rheumatoid Arthritis medicines like methotrexate. There is no simple answer. Like everything in life, we have to weigh risks and benefits. Is the benefit to be gained worth the risks involved?
Sometimes it’s little things: If the French fry falls on the floor, is it worth the risk to eat it?
Sometimes it’s big things: Is it still safe to fly the Space Shuttle?
Every day, we make choices this way. Some people choose not to take the Swine flu shot. John Madden won’t fly on an airplane…
Examining Rheumatoid Arthritis medicines such as methotrexate
It’s a bit more complex, but we go through the same process with RA medications. Whether we are aware of it or not, we make a judgment about whether the benefits outweigh the risks. If the anticipated benefits outweigh the foreseen risks, then we are willing to give the RA medication a try.
Risks of medications
Risks are things that could go wrong. Sometimes there is the risk of side effects or an allergic reaction to a medication. There may also be a risk that the medicine could cause damage if it is used long term.
Benefits of medications
The benefits list is easier to accept. What short term benefit can an RA’er get out of this? How will this medicine help me fight Rheumatoid Arthritis long term? Is there a long-term benefit?
A Caution against bias when judging Rheumatoid Arthritis medicines
Unexepected things become part to the deliberation process about RA medicines. Past experiences of the individual, the anecdotes of friends, hopes, and fears all can play a part. Several people have told me that they are afraid of Rheumatoid Arthritis medicines like methotrexate because they read a list of side effects on a website.
We should read the list of potential side effects of Rheumatoid Arthritis medicines such as methotrexate. However, we should not stop there. We should weigh the risks and benefits and make a reasonable decision based upon the facts.
Using the example of methotrexate, since it’s such a common Rheumatoid Arthritis medicine, compare how risks are viewed. Compare birth control pills for example, a medication with a list of risks which is similar in some ways to the methotrexate list. Birth control pills have a tremendous list of risks / side effects. However, few women today concentrate upon the risks involved in birth control medicines since they have previously determined that the benefits are worth the risks. With methotrexate, however, the risks are much more notorious.
Let’s compare another Rheumatoid Arthritis medicine to methotrexate: prednisone. Prednisone is legendary for its effectiveness in treating Rheumatoid Arthritis symptoms. Therefore, its side effects/ risks are usually forgiven. I don’t hear many people saying that the long term risks keep them from taking prednisone or discussing how easily the body becomes dependent upon it. The great benefit is assumed to outweigh the risks.
Being unbiased about RA medicines is easier said than done
It is not easy to be objective when we are contemplating our own health and future, particularly when we are weighing that against whether or not we are able to get out of bed. We wonder whether the Rheumatoid Arthritis will take more years off our lives or our medicines will. That does not make it easy to be dispassionate.
Do you compare lists of risks before you take a medicine? Does your doctor ever provide you with a list of benefits when she / he prescribes a new medicine?
Note: The side effect links have several short pages, it’s not all on the first page.
Recommended reading:
How well do Biologic medications help Rheumatoid Arthritis?
Do You Take Methotrexate for Rheumatoid Arthritis?
Rheumatoid Arthritis Requires Disease Treatment and Symptom Treatment
The Controlled Burn Strategy of Disease Control for RA
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It is absolutely a deciding factor for me! I’ve got enough health issues to worry about from the disease itself and hereditary issues, so I’m choosy about what medicinal side effects I want to tack on to that concern.
Its all relative. Some people have mild RA, and the decisions are less stressful. They can weigh the pain against the side effects and still live a normal life, willing to put up with some annoyance in the form of stiffness, swelling that will go away with aspirin or other less scary drugs.
I have moderate to severe RA. When I was in the throes of mind numbing pain, I was reduced to a wounded animal who clung to any “rope” to relieve that pain. It doesnt matter at that point in time. Methotrexate, prednisone, bio’s ..just do something and do it now.
It’s the difference between being a blubbering mess of pain that can’t get out of bed, can’t raise your arms to hold a glass of water, or being a functioning human being.
If you don’t have that level of pain, don’t tell me what to ingest, dont worry about the side effects for me.
I took Arava for a while and it did do serious damage to my body. I developed peripheral neuropathy in my hands and feet. I still cant feel my toes, the feeling is gone and wont return. My hands recovered somewhat.
But Arava did not phase me, or make me afraid to try other things. It is the pain that does. It is a personality on its own, making decisions for me that I might never make alone.
With enbrel and prednisone and celebrex and plaquenil and methotrexate I can live in relative peace.
The alternative is to take nothing and let this horrible fiend take over. I lose me and become the pain. Only pain. Not gonna happen, as long as I have options.
There are people who say things like “oh my god ..methotrexate is CHEMO .. how can you take that, have you tried” … (some quacky new remedy). I just shake my head at their ignorance. Oh the casualness of someone who has never known severe and chronic pain.
Its in every joint in my body, neck, spine, ribs even. I actually had a doctor tell me I couldnt have it in my spine. Tell that to my MRI. Ha!
But with the drugs I take, the fiend is whipped into the corner, unable to ravage me. I’m holding steady, keeping the monster at bay. If the drugs stop working, I will definitely try something else new. No fear. I only fear the pain, and you would too if you could live in this frame for a day.
Gee, Kay, that’s so good I want to post it as Monday’s blog. I need a day off anyway…
You wrote: “There are people who say things like “oh my god ..methotrexate is CHEMO .. how can you take that, have you tried” … (some quacky new remedy). I just shake my head at their ignorance.” I’m so glad I’m not the only one. I feel better.
Gotta agree, Kay, the pain drives me to take them anyway and hope the side effects don’t stop me. Most meds actually have a pretty good list of “potential” side effects anyway.
Have to try it to see what it does/doesn’t do for me.
I admit to hesitating with injections, but not for long. Worth the trouble! I’m hesitating longer with IV’s because I have been such a hard stick and I’m just not that desparate yet. But it is probably coming. The pain is knocking on the door.
But the biggest thing that stops me trying new meds? Not the fear of side effects. It is the cost and wrangling with the insurance people. (and isn’t that just what they want!)
Thank you for today’s blog Kelly! Like Kay said, when I was diagnosed, the pain was so bad I was willing to take anything the rheumatologist recommended. Did the side effects worry me? Sure, but not as much as the inability to hold my baby. That was clear and present. The risks/side effects were maybes. I also knew what untreated RA could do to me after witnessing what it had done to my great-aunt. Unfortunately, the methotrexate didn’t do much for me except cause mouth sores that no amount of leukovorin would clear up, so the doctor told me to stop taking it after 6 months.
I will admit though, that the side effects of Prednisone make me very hesitant to take it, even in the middle of a flare. A few weeks ago when the swelling was so bad that I could barely walk, my husband said that I needed to call the rheumatologist and ask about a prescription for Prednisone. I said no. After 6 months on it, it had taken a good 3 months to feel normal again. The irritability, sweating, weight gain, oily skin, and acne are awful. I deal with a lot of those things anyway thanks to PCOS and the Pred just exacerbates it. He said “Well, wouldn’t you rather deal with that stuff than hurt like this?” I said “No. Ask me again in a few days.” Call it stubbornness or stupidity or whatever. A few days later I did call the rheumy and a week and a half later, was able to walk relatively normally again. And already I’m dealing with the side effects again. I hate them so much. That is the one drug that I continually weigh the benefit/risk ratio in my mind. “Hmmm…on one hand, I can walk. On the other hand, I’m an emotional mess who keeps having night sweats.” Blech!
I agree with you all. I was very concerned about the risk of taking methotrexate, but quickly learned that I was dealing with a quality of life issue. Not being able to sleep due to the pain, having to hold my arm up with my other arm to brush my teeth, & not being able to walk were things that I wasn’t willing to deal with, if I had a choice. I weighed my options and decided that it was worth the risks. I do worry about the future, but really…we are all terminal.
For now, I just do everything in my power to stay healthy and take one day at a time.
Jackie,
I believe you are not only protecting your quality of life, you are protecting your life itself by deciding to take the disease fighting medicine. Untreated RA scares me many times more than dmards. NOT taking the meds is not worth the risk in my opinion. You made the right decision to fight one day at a time.
Having been prescribed Methotrexate by my Rheumatologist, I spoke with my GP about my concerns. She assured me that the key was monitoring and I have regular blood tests to check that its not doing too much harm. Without it I’d be crippled.
I always go to rxlist.com and read about any medication before I use it. Even if your dr tells you about the med there isn’t enough time to talk about all of the details. At least rxlist.com can give you more details. But yes, you must weigh risks and benefits. Usually for me the benefits outweigh risks BUT at least I know what to look forward w/side effects. What is normal and will subside vs what is serious and requires immediate attention.
As always, amazing post Kelly!
Hi all, All of your responses sound like all the conversations I have with myself in my head regarding the meds! I am willing to try anything, and pretty much have…..and to my incredible frustration EVERYTHING gives me intolerable (and sometimes dangerous)side effects, so I go on to something new, only to have that make me incredibly sick as well……from the Plaquenil to the methotrexate to the prednisone to the biologics……not to mention the allergy to ibuprofen, caffeine, the list goes on and on…..meanwhile, the disease continues to stalk me, overwhelming me at times. I am now patiently waiting for a new option. Or a miracle. But I remain open to trying…..
Kelly, with all the hard work you do on this site and all of us that you answer, I thank you- I wanted to ask you on a more personal level- since you started your new IV treatment, have you felt a difference? Keeping in touch, Ves
Gee thanks, Viesta.
As you can tell, I avoid talking about that as much as I can… I still have this chest congestion & constant coughing, so my I’m 2 wks behind now for the IV. So, I’ve only had one treatment of Orencia. They did say it will take a couple of months to help. I did notice that the first treatment did help some though, amazingly…
FYI … RA does NOT affect the spine … your MRI and Rheumatologist should have explained that this is osteoarthritis … NOT RA. Be glad to provide the links but if you go to John Hopkins or Mayo Clinic sites, along w/ others, you will find that the spine is not affected.
Hi Beverly,
I haven’t talked to Kay’s doctors so I cannot answer for her. But both my rheumatologist and my general practitioner and a chiropracter confirmed the RA in my spine.
The spine is sometimes left off of the list. I’m not sure how that happened. But, I know there is some confusion. RA can affect the spine as I wrote in this post.
Here is another post about a woman who’s RA in the spine became life threatening. There are 2 particular vertabrae in which RA can be serious. One is in the cervical spine as in this woman. The other is in the lumbar spine & can lead to paralysis.
In my 14th year, I have tried everything under the sun. They determined that I produce antibodies so quickly that nothing works after about 9 months … I can think I have found the miracle, then BLAM!!! The best thing ever for me was the few months I was able to take Remicade … felt normal for the first time in about eleven years (like 90% pain free) – I have moderate to severe RA … then I had such a violent reaction … stayed off everything for the next 12 months (except Aleve thus the ulcer) Am now on Humira and Arava together … blood work every 30 days … we’ll see what happens next … it’s just different for everyone but the ONE THING that helps all of us is a POSITIVE ATTITUDE!!! My saying is “Suck It Up Buttercup” … there’s folks that are so much worse off than I am …. Merry Christmas!!!