Does anyone else feel worse when they take their RA meds?
I'm prone to infections so there are times when I'm not on my medications for long periods of time. I have found out (because of this) that it is my RA meds that are making me feel really run down and achey all the time. I take my meds on Friday night and by sunday I'm feeling totally beat up and by Friday morning I'm feeling pretty good. What can be done to help ease these side effects.
I also feel completely fatigued and completely wiped out most of the time. I could sleep all day, most of the time and just feel generally unwell. I am on Humera and Methotrexate and feel that it is these that are making me feel this way. I spoke to my Rheumatology Nurse about this and she said it's just something you have to learn to live with!! It's either severe pain or feeling unwell. What a choice!! I would also be interested in hearing if anyone else has this problem and what they do about it. At the moment my life is on hold because I don't feel well enough to do much. Sorry I couldn't help but at least I know I'm not the only one feeling like this. Let's hope someone out there has some advice that helps.
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If you are on what I call "the big drugs" for RA, it's common to have some initial side effects after taking it. For instance, after I get my Humira shot, I spend anywhere from 2 to 4 days having increased muscle pain, sinus issues, fatigue and nausea, after which the side effects simmer down to a dull roar. Over time, some of the side effects have increased (muscle pain) and others have decreased as I have become more used to the medication (fatigue). Taking medications like this is a bit of a balancing act - you try to manage the side effects well enough that the pros outweigh the cons. For instance, you can rearrange your life so that you can get more rest for a few days after you take the drugs, then increase your activity level, take a few more painkillers if your side effect is muscle pain or eat a somewhat bland diet for a few days if you are nauseated. Over time, you assess the negative impact versus the positive and hopefully the positive wins.
However, the side effects can become so debilitating that the drug is not doing what it's supposed to do: enabling you to live your life as much as you can. If the side effects of your current medication are making you feel so unwell that you can't do anything but sit around and feel unwell - even after having giving yourself a reasonable amount of time to get used to the drug - then make an appointment with your doctor to discuss your options. There are many different medications for rheumatoid arthritis and they don't all work in the same way for everyone. Maybe you will respond better to a different drug, maybe you need to tinker with the dose. Treating RA can at times be a doing a jigsaw puzzle and it might take a while to find what works for you. Keep the lines of communication open with your doctor - the two of you are a team and together, hopefully you will find an effective treatment with tolerable side effects. Good luck!
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I just spoke to my RA doctor about this too and he said that there is nothing that can be done, either the pain from RA or the side effects from the drugs. I am taking meth right now and am wipped out for about 4-5 days every week.....the only thing the doc mentioned was taking steroids (predisone) to help me feel better but I personally can not take them due to my heart condition. Maybe you can check and see about adding predisone??
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I too feel the same way. I'm new to this board because I'm frustrated. I was diagonosed 3 years ago. The pain is gone and I can function, but the amount of stiffness and fatigue makes me feel 100. I've been on Methotrexate for over a year. I keep asking my rheumatologist, "Is this as good as it gets?"
I didn't like the answers my first Rheumatologist gave me, so I now am seeing another in another city. But I get the same answers. Can anyone relate to "Well, can you get out of bed in the morning?" Yes, I can. Is this the standard question they all ask--well, if you can get out bed you're doing good enough??? He's very impressed because I'm very active and exercise every day. That does help with the stiffness. Am I being selfish for wanting to feel better?
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Wanting to feel good is not being selfish. Wanting to feel good is normal. Maybe it's because I'm a writer and therefore a smidge oversensitive about words, but if your doctors are somehow suggesting that you're being 'selfish' for not being satisfied with what you have, then you need to find another doctor.
However, depending on how you define 'feeling good', it may not possible. The unfortunate reality about living with RA is that it has a significant fatigue component. The medications that help control RA also tend to have fatigue as a side effect. The trick is to find a medication or mix of medications that maximizes the good effects of the drug(s) and minimizes the bad, but you can expect to live with a certain amount of fatigue and stiffness. Having a rest in the afternoon can help and taking it easy on bad days will also help you retain/build energy. Vitamin supplements, meditation and yoga or tai chi can also help. Over time, you'll adjust to your new energy levels - it's a pain in the neck, but you'll adapt. That said, being able to get out of bed in the morning is not the only criteria for a medication working the way it should. There are other options you can try if you're unhappy with your current medication, but I would suggest a more in-depth discussion with your doctor about expectations and possibility of improvement before you explore other options. Talking to other people who've had the disease for a while will also help you assess whether your expectations may be too high or if the medication isn't working to its maximum potential. Over time you will learn the difference between symptoms that you have to get used to and symptoms that mean you medication isn't doing what it should.
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I had just discussed this with my doctor a couple visits ago. I also feel horrible with methotrexate! I feel run down and almost flu-like, (like when your in bed and you can barely just lift your head and your all achey) for a couple of days after I take my methotrexate, then it passes and I feel better.....I think taking folic acid has helped a little, maybe you can talk to your doctor about if there is anything to lessen the side effects. I agree about weighing out the good and the bad. To me, I hate the side effects of the meds, but the benefits so outweigh the bad. (I guess I've kinda gotten used to feeling crappy every week
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I found that taking my folic acid (5mgs per day except MTX day...on that day I take 5mgs of FOLINIC acid 12 hours after my needle) helped reduce my symptoms...
Sadly I find that both the Enbrel and the MTX cause nausia, mucle pain and fatige...thank goodness for gravol!
Fortunately My Rheumy trys to find solutions to my problems, I have been taking the folic acid for over 5 years now.
Take care
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I really don't feel bad at all and have been told by my rheumatologist that I am in a chemical remission. I am a 63 yr. old female and have been diagnosed since 8/07. I'm on Prednisone 5mg/day, MTX 15mgs once /wk, Humira 40mg/q. 2 weeks and folic acid 1 Gram /day. I'm very consistent with the medication...I don't miss!!!
However, I walk 2-3 miles 3x/wk and am supplementing my diet with Vit. and minerals daily. This is the regime I am currently on and was on several yrs. prior to the diagnosis: Centrum Silver 1/day, Vit. C-500mgs/ Vit. E 400mg combination 1/day, Caltrate-D 600mg 2/day,
Selenium 200mcg. 1/day, Chromium 400mcg 1/day, Magnesium 250mg. 2/day, Co Q-10 100mg 1/day and Omega 3 fish oil 1000mgs. 2/day. I know this seems like a lot of supplements but I was told /my Gyn Dr. to take these when I experienced menopause. I believe they may be the reason why I'm not as tired on the RA protocol. I don't eat a special diet as a matter of fact I'm probably a junk food eater. Maybe supplements will help.
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I have R. Arthritis mainly in my back. The medicines I take help me out a great deal. They seem to give me energy during the daylight hours when I need it for working. On the other hand, they wind me down at night. Without them... I'm finding it hard to stand or sit for a prolonged period of time. I don't complain much, but you can definately see it in my face. I'm on a nerve blocker but sometimes I can feel that achy pain. I'm getting where I feel it in different places around my body now. Whether good or bad news... I know I'm gonna be alright. I thank the doctors for what they accomplish cause they can do so much. I thank GOD cause HE gets me through the pain. I don't let R.A. tell me what kind of a day I'm gonna have.
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I would get my methotrexate shot wed, and feel like total crap to the next monday, have tues feeling a bit better then wed a shot again. Did it for 12 weeks no better feeling. So then I got put an Arava pills. Wow.Been 11 days of hell. Wanted the vet to put me to sleep . As that wont happen I called my Specialist my GP and the RA nurse. As I cant even get out of bed, nausea, diareah, sore achey muscles, and pretty sure even my hair hurts. So now I am too quit all meds for a week, drink lots of fluid to flush the Arava. And in a few weeks start Humaria shots. Which after reding up on it, I am more unsure then ever. Which is worse???The pain, the joint damage or not being out of bed wishing I would die from the med symtoms. Its a personal decision, and I guess we will see. After reading your other answers I am scared its going to be the same old story. Well see.
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