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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… :chic:
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… :pill:
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!!!
I,too, have been diagonosed with RA, negative whatever, I just don’t understand this diagonisis? Please excuse the misspelling of the terms. My Remutologist is a leading Doctor where I am living, with published research, but I still don’t understand this disease. I also have Fibromylagis, she doesn’t seem to be interested in that. I have been diagonised with fibro for over 20 years and treated for this. But the tests show that Ihave “negative RA”. what is this???? I am on Plaquinel, had cataract surgery and did not recover vision, opthomologist referred me to a retinalogist because of the plaquinel (which I had been on for about seven months). Retonologist stopped Plaquinel, doubted adverse affects so soon, but percaution was to stop. My vision improved in weeks, continued my Plaquinel per Dr’s orders, follow-up six weeks later showed deteration of vision, continued plaquinel for 30days and then re-evaluation. I am waiting for appointment fir re-evaluation. I called remutalogist because of severe pain, she ordered medication, said we will discuss eye evaluation at visit next week. I feel lost…I am confused….Idon’t understand, no matter how much she explains the disease. I don’t know what to do. I have been reading and reading the internet trying to understand this disease and quite franklty I am terrified of taking medication on the list because of side effects. I am scared, in limbo, what about the fibro, RA, which is which and what is causing my pain throughtout my bodY?????? Yes, my hands give me a lot of probmems, lock up, swelling and pain. Also, though, I have severe pain in my back, shoulders, elbows, sometime my feet.
ANY HELP?????? PLEASE!!! My husband, of 50years, doesn’t seem to understand, or frankly seem to care. I only get help from him with cleaning the kitchen, or a specific task, usually lifting, with grumbles. My children feel that I am simply complainging about the pain and their Dad and don’t seem to want to be bothered. Yes, I am getting counseling, but to the tune of leaving home, which I cannot do at my age.
Help will be appreciated.
Ada, there are so many questions here. You poor dear. RA is an awful & complicated disease. I’ll try to do what I can. Maybe you will want to use the Tags: list of topics box at the top. If you click on the little arrow there, you can find lots of topics in your questions. Click on a topic & it will bring you to articles about that topic.
Okay, now a few questions: “Negative” means that the blood test did not find Rheumatoid factor antibodies in your blood. But you still can have the disease. There are lots of people like that. It just means we need to invent a better test someday. They are trying, I’m sure.
About your vision & the Plaq.: I would take a notebook with you to the appt. Ask your questions. Take down notes. Tell the dr. that you need to know & then listen carefully. If you cannot get answers that satisfy you, you may need to ask for a 2nd opinion from another dr. Since you have the issues with the eyes, maybe the dr. would consider methotrexate instead.
About the fibro: This is confusing for the dr. It is a new diagnosis & very unclear even to scientists. Often, what is called Fibro. turns out to be RA. Sometimes the diagnosis is “changed” & other times the person gets both diagnoses. It depends on the dr.
About people not understanding: That is what most of us w/RA live with. We understand & have those same problems. You are being brave to take the medicine & go for counseling. Sounds like your husband might go too. 😉
I will add a couple of links to some posts that relate to your questions. Click here. & Click here. Good luck Ada.
Can methotexate pills cause weight gain? I took methotrexate for 5 months with the doctor adding one each time I went back to see her. I think I got to 6 a week and my blood test came back with a raise in the liver enzymes. So I chose to go off it. She then put me on an antibiotic and that caused yeast infection. She then tried me on Sulfasalazine and that caused a weird rash and breathing problems. So we chose to try methotrexate on a low dosage. I have been on it a month and can feel myself gaining weight. I just lost 12 pounds and need to loose 40 more. Can it cause weight gain??
Thanks Kelly for this wonderful resource.
Warmly, Stephanie
Nice to hear from you, Stephanie. No, I have never heard that or read that anywhere. Prednisone, yes; methotrexate, no. Is it possible that you are moving a lot less because of the RA or are you taking any other medicines that could be to blame?
Thank you Kelly for all your help. Don’t ever forget what a gift you are to others!
Steph
I know this is an older post, but I wanted to say that I did gain weight while on MTX – but mostly because of the nausea. I was eating a lot of starchy food to try and settle my stomach. It was like morning sickness for me – too bad I didn’t have the food aversions that kept me from eating like a pig during pregnancy, ha! Anyway, I could see weight gain as an indirect result of MTX treatment, so maybe this was the case for you, Stephanie?
Was on Mtx, and off a week thanks to the switch from pills to injectable, and wrong syringes, wrong advice. Got the pills as a back-up, and if I can’t find help drawing up the med into the syringe I will take the pills. Never had effets from the pills, but my new doc thought the injectable better. My greatest concern is that I have been given an Rx for 5mg 2 tabs Prednisone as needed. My other doc would not let me take it for long and tapered off, and after a yr I got a 10 day tapering dose. Yikes! The side effets scare me and knowing I had very blurred vision before, have made it so I have not taken it and the site said to not stop it suddenly. So, whats up? I don’t understand the new dose, and I refuse to take, even though it might help my already deformed hands. Does anyone else get blood lines under the nails? My first rummy stopped the crippling of my fingers. I also have OA as well. Ra docs are few & far between in this area, so I don’t want to make my new doc mad, but I need answers.
Hi Robyn! After reading your comments here, I can well understand your confusion re: how or when to take the Prednisone. If I may make a suggestion: Call your rheum to ask how to take the prednisone, and under what circumstances to take it. This will not cause your doc to feel you are being unreasonable. Speaking as a former office nurse, and as a long-time RA patient, the doc may have wanted you to have a supply of prednisone on hand, and then take it as a tapering dose or as so many 10mg for so many days in a row. I have been on low-dose prednisone for a long time, with occasional tapering bursts. Luckily, I’ve had very little side-effects but the goal with steroid therapy is the lowest dose possible, for the shortest time possible. Of course, it does little good to just throw in a 10mg dose in on random days so that is why I say to call for more exact directions. Good luck with your MTX. I hope you can find someone to draw it up. Does your doc know you’re having difficulties with that? He may be able to help find someone to draw it up for you such as through a homecare nurse. Also, have you seen an opthamologist for your blurred vision? RA and/or the meds can cause vision difficulties. Good luck!
Thanks, Julie, that sounds like good advice.
Robyn, do you have the bigger syringe to draw up with? It makes it a little easier for me. Then I switch the needle to a smaller one for injecting. I don’t know anything about the nails. Sorry.
Thank you both for your replies. The Prednisone I originally had was for a longer duration, but was a tepering dose. The second was for 10 days only with a tapering does. The present prescription is for random taking and no tapering(PRN). I do not agree, so will try to clarify this with the doc my next appt.. After stopping my first Prednisone my vision returned to normal, and had no problem with the Mtx. I will continue to pursue getting help with the injectable, and am going into the city this morning and will stop first at the Home Health place to ask for help. Before I had no problem giving the Vitamin B injection to a relative, so I’m not giving up to do this for myself.
I’ll bet you have seen this article on needles, but just in case here it is.
Stopped by the Home Health. Aha! The nurse tried it and found the vial did have a problem-not me! She used my other bottle to draw up two syringes and had no problem. I was doing it correctly, just the bad vial. She said to return it to the pharmacy, and they replaced it with no problem. That is a nice article on needles and I will save it, as I do all of your articles. Life is so challenging and we need to continue to be strong and keep the faith.
My Aunt(non-blood) had gnarled fingers many years ago. As a teenager I marveled at her ability to sew and do many other things despite her RA, and she lived to be 80yrs of age. My mind reflects on her strength when I face my own challenges.
Robyn, so glad that is resolved.
As a medical student back in the late 1960s, MTX was used ONLY for cancer patients. Thus, when my rheumy wanted to begin MTX in the summer of 2007, I was very hesitant! Memories were vivid and my area of speciality did not include anything with MTX so my knowledge was fixed at what I had learned years ago. Since I have been on it, it has helped and I no longer fear it as I once did. I would tell my patients that every medication is a selective poison – one must weight the benefits vs the risks. But one must look at the source of information as well as the information itself!
Kelly, Thank you so much for keeping this thread open so long. I escaped probable paralysis myself when I finally had back surgery three years ago. I had damage from RA at L 4/5 and thank goodness that particular pain has not returned since.As to RA meds and side effects, I was on Humira for a year, and was feeling great, until I developed a myeloma on my face, and had to stop the med. The pain in hands and feet gradually escalated until my fingers and hands began to lock up at night.Braces helped. Now treating what the rheumy claims to be FM with Lyrica, and after a month, the plan is to go after the RA; feeling better at present, but am worried about what any new med might be.
Good luck Marilyn – I hope you find an RA treatment that works safely for you. That surprises me that the rheum doc wanted to try the lyrica first. I’ve always heard them say it in the other order. To use RA treatment and then offer lyrica if there are leftover symptoms that can’t be explained by RA. Maybe it was due to your myeloma experience. There are so many different philosophies with different docs. You have certainly been through a lot – I hope it gets easier.
I was diagnosed with RA about 2 years ago, and currently just take Plaquenil advil, and vicodan for pain/ I was diagnosed with moderate to severe RA. My GP referred me to a Rheumatologist but I declined. I read all the comments about the different drug regimes that is prescribed. I am speaking for myself, but there is no way I personally would take medicine that have side effects that could harm me, when it won’t cure me. To take these medicines for months only to find out it didn’t help and then get switched to something else is not for me. I have been adjusting my pain medication on a daily basis as some days I need more and some days I need less, I decide. I would rather live with the pain (which can be intense) than to subject myself to a lifetime of medications that make you sick, lower your immune system, and the countless other side effects that may or may not occur. No thanks.
I wondered if in all your research you had ever been able to find out how long Methotrexate stays in your system after the medication has been discontinued. 2 times I have experienced swelling of the left forearm (swelling like double the size of the right) and a rash on my neck after my 8th dose of mtx 15mg, it was then dc’d. I was restarted on it at a dose of 10mg, had 4 doses of it and then it was discontinued due to an abnormal CT of the chest. 17 days later I had the left arm swelling again, no rash. I know you can’t answer every question but wondered if you’d ever come across this one before. Thanks for all you do!
I have read that it can stay in the body about 6 weeks if someone has been on it awhile, but that is probably only a rule of thumb. I was told that there was a bloodtest for it but that it’s not done very much any more.
I apologize in advance if this is not the appropriate page to post on this subject. I received a letter in the mail today from my Rheumatologist’s office inviting me to consider participation (if I’m eligible?) in a clinical research study of RA medications. The timing of this seems odd to me as only Tues, at my appointment, I agreed (albeit reluctantly) to try Remicade. The wheels are in motion on their end to make that happen and set my 1st appointment. I would be very interested in input from others of this community on their experiences, if any, with drug studies. Good idea? Bad? Thank you!
When I read about all the pain described above, I feel not alone! No one understands how it feels except people with RA. My problem is that I had Hepatitis C and had liver damage as a result. I am in my 9th year of remission, but have been extremely limited as to medications. I am now to the point that I cannot live my life normally anymore and am thinking of knuckle replacement surgery. My right hand has been so bad for so long and now the left one is catching up. But I am afraid of the bio drugs. I am scared and confused and depressed. The ortho does not ‘believe” in knuckle replacements because they don’t last long enough, but I am 55 and would like to live my next 10 to 15 years as normally as possible. Why should I be miserable for the next 10-15 years and get joint replacement when I am 65 or 70. Doesn’t make a lot of sense to me. I am a flight attendant and I NEED my hands!
BEEN DX WITH FIBRO, OSTEO, RA AND PMR SINCE 2003. LATEST RHEUM PUT ME ON LOW DOSE PRED AND INCREASING METHOTREX. THE METHOTREX DID NOTHING FOR ME AND I AM OFF IT. I INSIST ON PRED. ONLY 1 RHEUM SAID I HAD PMR AND GAVE ME PREDN. CURRENT RHEUM WANTS ME OFF IT. IT IS ONLY THING I CAN FUNCTION WITH THE LEAST PAIN. I READ ABT THE SIDE AFFECTS. WILL CONTINUE ON LOWEST DOES – RIGHT NOW 5 MG DAY AND GOING A LITTLE LOWER. HAVE PERSISTENT ELEVAT SED AND CRP. WITH ANY RX I TAKE. IT RUNS IN MY MATERNAL FAMILY. I DO NOT WANT BIOLOGICS WHEN I DONT EVEN USE LOT OF PAIN MEDS. DRUG COMPS PUSH THE BIOLOGICS TO MAKE UP FOR PRODUCTION.
Do you have reviews on the injectable Simponi.
Kelly,
I was reading a post that prednisone can cause weight gain but not methotrexate. Over the last 2 years I have struggled to lose weight. I’ve been on prednisone 10mg plus several whole body injections as well as various other DMARDS and biologics. I have managed to lose 40 pounds over that same 2 years. I started methotrexate 4 weeks ago 7.5 mg. I faithfully log on My Fitness Pal everday over the last 500+ days. Since I began mtx I have eaten an average of 850 cal with average of 100 gm of carbs per day. I have been extremely nauseous and food does not even appeal to me which is the only good thing considering. I have gained about 5 lbs. I can only imagine how much weight I would pack on if I ate more normally (1400 cal). I think that weight would likely double. Last year I had a fatty liver but due to my faithful eating and medication my liver was normal upon start of Mtx. I don’t know what is happening to me but if I continue to gain weight my joints will suffer as well as other issues that come with excessive weight. I’m so unhappy. Pain, weight gain, exhaustion and even my moods have even become unstable. I feel like I’m fighting for my life everyday. Before mtx my moods were way better so I’m attributing it to that particular medication. I’m so tired. My marriage is suffering because my husband also lacks empathy. Like so many I wonder how I can keep going.
Best wishes to you and all my sisters and brothers suffering,
Evette
Thank you for your information. I was diagnosed with RA ten years ago but had the disease for many years before that but because my sed rate was normal, it went unchecked. I have had so much conflicting info from doctors, it has been very frustrating. I appreciate your website! Thank you!