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.
Q: Does anyone else feel worse when they take their RA meds?
Answers (11)
6/18/08 8:40pm
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!
3/18/10 8:23pm
I think it's terrific that you're having such good results with exercise! I'd love to see you write a SharePost about how it's working for you - I think it would be very helpful to some of our users and much more interesting to hear it from you. Click on the "My Home" tab at the top of the page when you're signed in and once there, click on the tab that says "My Stuff" in the be a button for creating a SharePost.
I look forward to reading it!
5/ 4/10 5:18am
I have had zero negative arthritis for 18 years and have hadly been on any medication mainly because I couldn't tolerate NSAID's of any form. I would get
stomach problems and as I am an 'O' blood type this is common because of high acidic levels in blood. So I have taken pain killers and tried all manner of alternative healthcare including Chinese medicine. colonic irigation, multi vitamins,homeopathy,chiropractic treatment and allergy diets.
I found the Chiropractic treatment helped with stiffness in my feet in the morning and the homeopathy helped with this too but they only noticed marked improvement a few days of the treatment. Chinese medicine was the most powerful and completely got rid of the swelling and pain but left me with heart papatations which the chinese doctor told me meant I had to stop the medicine immediately. That was when I lived in Hong Kong the this was real Chinese medicine the kind you boil in a clay pot. The mix had secarda discarded skin and pieces of bark which were boiled up and then the juice was drunk. I think that this medicine could kill so has to be monitored. But it worked at putting my arthritis in remission.
Other that above I have found injections of prednisione have put me into remission for up to a year each time. I now have had a 6 day course of prednisone by mouth 40mg and have gone into a remission. As more foot has got worse each year over the last 4 years I need this more to stop damage which I probably have now after 18 years.
Anyway I haven't tried and of the disease modifying drugs but might have to for the foot as is bad and one hip not so good. Also have flat foot in one foot and is giving lots of pain so have orthotics now.
Well thats my experience and its been a battle sometimes but I have had alot of good days or have just pushed on in the bad.
Keep going everyone and enjoy your hobbies and interests - I find teaching and art take my mind of it!
5/ 4/10 11:56am
It's interesting to hear that you managed so well for so long on Chinese medicine -I really wish we here in the West would study it more, because it does seem to have qualities that can be important to health. And I agree with you - it may be time to investigate DMARDs (disease modifying antirheumatic drugs like methotrexate, Plaquenil in the Biologics) so you can protect your joints.
One caveat about chiropractic care. It can be very helpful for a number of conditions, but be very careful when you have RA. The disease makes it more likely that you can have something bad happen during an adjustment and depending on your level of damage, chiropractic care is counterindicated for people living with RA. Generally, it's recommended that people speak to their rheumatologist before starting chiropractic care, just to make sure that you protect yourself. As well, talk to your chiropractor about it - if you don't have significant damage, you may be OK, but make sure you cover all the bases.
6/17/08 11:10am
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.
7/ 1/08 1:39pm
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??
7/ 3/08 10:19am
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?
7/ 3/08 12:12pm
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.
7/ 3/08 3:34pm
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 
)
7/ 4/08 10:00am
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
7/ 4/08 7:08pm
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.
7/ 7/08 4:11pm
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.
7/28/08 3:51pm
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.
5/25/10 3:42pm
I just took my third dose - six pills - of methotrexate on Friday night. I am on the Folic acid supplement (1mg) per day and also take Vitamin B complex supplements, Calcium and D, multi vitamin and Acai berry. Other meds I'm on are Prevacid, Singulair, Spiriva and Zyrtec and just started Omnaris (nasal spray). I have an RA and Fibro diagnosis--but I have to say after this third dose of MX, I am in tremendous fatigue and pain--and it's Tuesday. I don't know if it is the MX or the combination of everything else--but it's hard to just function like this. I am at work, but it's difficult. I can't sleep well because of pain in my back, but if I take something, then I feel worse when I get up in the morning. My hands, elbows, feet and ankles are terrible. I've tried so many meds (Plaquenil, (hair loss), Prednisone (heart palps, swelling, hair loss and weight gain), Celebrex (stopped working), Lyrica (swelling, vision issues), Cymbalta (SEVERE vomiting), Neurontin (swelling, sleeplessness), and the list goes on. I've had muscle relaxers, Tricyclic antidepressants, pain meds (can't take morphine or its derivatives, including oxycodone)--so far not having much luck. I can't really exercise except in the heated pool, but now even that causes excruciating pain. Had a full endocrinological workup and that is all OK. I'm 54 years old and feel 90. Life isn't supposed to be like this.
5/25/10 3:57pm
I have since stopped the MX and have tried 3 other medications since I wrote this. I do feel much better since I have stopped them. A sulfuradine (somthing like that) tabs have made a world of difference. I like you am on a lot of different drugs and supplements. I do Humira shots twice a month, am on prescription strength Vitamin D, plus over the counter Vitamin D, Ambian to sleep, muscle relaxers, Fish oil, Celebrex, Calcium, Multi vitamin. This is way down compared to what I use to be on. I still have bouts of painful days and I take Davacet for the pain. It makes it tolerable. I just started this new drug a few weeks ago and I'm sure I have to build it up in my system. But I have noticed a difference and also started doing Chair exercise last January. Nothing really heavy duty at all. Its a tape for seniors and it gave me back a lot of my range of motion I lost in my shoulders. The doc told me to start doing something or I would be in trouble. So the old use it or lose it so I started using it. It was very painful and difficult to start and some days I can't complete some of the exercises but I still try.
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I see you on here alot and I haven't figured out how to reply to all of the people. I'm doing much better as I have found out that exercise really does help and I'm not talking heavy duty knock me on the floor exercising. I'm talking about something as simple as chair exercise with light weights. I still have my pain which I believe is limited to the damage in my shoulders and achy muscles to deal but not as often or as bad as it was. I hope to try some other chair exercising and yoga and see how I do with that. If you could let others know I think that would be really great.