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Scared by Side Effects

Q: After reading the pharmacy sheets listing side effects of the medications I take for rheumatoid arthritis (RA), I can't help but wonder if the "cure" is worse than the disease. Is it possible I'd be better off skipping the medications and taking my chances with the RA?

A: For those with arthritis, side effects of medication are an understandable worry. But I would hate to see fear cause you to give up medications completely. True, no medication is completely safe, and the potential risk of side effects can be frightening. Anytime you interfere with one bodily process you may interfere with others – sometimes in undesirable ways. But the dangers of untreated RA, in most cases, far outweigh the risks of the drugs used to treat it. Each day, medications ease pain, prevent joint destruction and improve the lives of countless people with arthritis and related conditions. In some cases, medications can literally save lives.

The pharmacy sheets are provided as a service to make you aware of side effects that can occur with a certain medication. Keep in mind that the key word here is "can." You shouldn't assume that the listed side effects will necessarily occur in you. Even if you do experience one or more side effects, you may be able to reverse or halt them by stopping or changing medications. In most cases, no action is needed; the side effects resolve on their own.

Many factors can influence how your body reacts to a drug. Some are largely controllable – such as when and how you take your medicine. Factors that can't be changed, such as your age and other health problems, may be compensated for with choice of medication or a dosage adjustment. Life is full of risks. Sometimes we have to risk experiencing a side effect to gain a medication's benefits. The key is weighing risks against potential gain. Your doctor can help you weigh those risks and choose the drugs that provide the most help and do the least possible harm.

There are also several things you can do to reduce your risk of drug side effects. Here are a few:

Let your doctor know about any other medications you are taking – even over-the-counter (OTC) ones – because some can add to the side effects of others. For example, taking aspirin along with a prescription nonsteroidal anti-inflammatory drug (NSAID) can increase your risk of stomach ulcers and other side effects.

Don't underestimate the power of nutritional supplements. Nutritional supplements, too, can affect the way a drug works. In some cases – such as taking folic acid along with methotrexate – vitamin supplements can reduce the risk of certain side effects. In other cases, taking nutritional supplements or herbs in addition to prescribed medications can interfere with the action of the medication or even enhance its potential side effects.

Find out if there are certain foods you should eat or avoid while taking a medication. Most drugs, including NSAIDs, should be taken with food to reduce the risk of stomach upset. For others – such as minocycline, an antibiotic that is being used increasingly to treat RA – taking with food can decrease the drug's absorption.

Forgo alcohol – it can add to the side effects of most drugs, from analgesics to antidepressants. If you can't or don't want to give up alcohol altogether, set a limit of two drinks (including beer) per week.

Ask your doctor to prescribe the lowest beneficial dose of a drug and never take more than the prescribed amount. Many side effects are related to dosage. High doses of glucocorticoids such as prednisone, for example, can cause a wide range of side effects, including fluid retention, fragile bones and increased susceptibility to infections. Low doses, which are often effective in managing inflammatory arthritis, have a low risk of side effects.

Take the drug at the time designated by your doctor. Timing, in some cases, can influence a drug's side effects. For example, taking the osteoporosis drug alendronate when you get up in the morning, rather than before lying down at night, can cut the risk of esophageal ulcers. Timing can also influence some drugs' wanted effects. By taking a drug at the optimum time, you may actually be able to reduce the dose and, thus, the risk of side effects.

Never stop taking any medication without consulting your doctor. A drug can't help you if you don't take it, but abruptly stopping a drug can hurt you. The dosage of drugs such as prednisone, for example, must be tapered to avoid serious adverse effects.

Let your doctor know if you suspect a side effect. He can determine whether the side effect requires treatment or if discontinuing a drug or perhaps educing its dose is in order.

Leonard H. Calabrese, DO, Rheumatologist

Scared by Side Effects

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Char

17 Oct 2009, 12:09

I meant to include: have the usual stiffness that doesn't go away, fingers beginning to curl... stilted walking because the feet do not always move or respond right and always remind Drs of the stiffness problems...do they not care until you develop the nocules? My genetic history does not look promising on this path.

Early symptoms of difficulty with complete/deep breathing-had the lung/heart tests done. Aside from personally increasing my T'ai chi and breathing exerciseson my own, nobody ever seems to care...

Char

17 Oct 2009, 11:53

Have had Fibro and RA for about 10 years or so...Am on Plaquenil. Have great amounts of pain to hand/finger and foot joints, sometimes requiring help with buttons, most necklaces & watches and use a special knife to cut food during flares. Also now have Dx added of spondeloarthropathy in lower spine.
All these seem to just work together to make me more prone to falling and greater pain more of the time. Now under care of Pain specialist- getting some relief at least to pain. My question: Since the swelling to the joints is no longer the prime symptom, and my visits seemed timed to when I am actually functioning, how does the Dr. take me seriously? As an artist and an actress I need my joints functioning together, not just unswollen. Daily.

anne

24 Sep 2009, 21:26

Today I had what me and my eye doctor thought was a cyst over the tear sac - it was basal cell carcinoma. When I "google" that, a risk factor comes up: immuno depressors - it seems more in the context of anti rejection drugs in transplant patients, but it is the only risk factor that matches me and my treatments for RA. It is frightening what we can get ourselves into when we begin our medications. There is no family history and I live in the northwoods and don't have intense exposure to sun, but I'll be wearing sunscreen when I walk the dog in January!

Ellen

12 Sep 2009, 16:53

I was on Orencia having trying many other drugs and it worked wonderful but gave me Lichen Planus which is a skin disease that causes you to break out everywhere and I mean everywhere even in the palm of your hands and feet and once I stopped the Orencia, the Lichen Planus went away. It pisses me off though that in my records it shows I already had Lichen Planus and the Orencia made it worse but thats not it at all. Lichen Planus is a side affect of Orencia. I was recently approved though for a research stuf for Actemra and have had one dose to we will see if this new drug works and hopefully causes no side affects. My advice to anybody is your doctor doesn't always know everything. You need to voice your concerns and make him listen to you.

Hilary

18 Aug 2009, 15:38

I am 28 years old and was recently diagnosed with RA. I have had one major flare up where I could not even dress myself. After that, I just have just had mild pain in my wrists and ankles and stiffness at night. My doctor wants to put me on Methotrexate, however I feel like it is a drastic medication since I am having few flare ups. I exercise for an hour and a half 7 days a week so I still feel like I am very active. Any suggestions on weather I should take the meds or if anybody has any other suggestion? Thanks!!

06 Aug 2009, 12:44

I was just diagnosed with RH this week and was only given the options of biologics and methotrexate. I was told that Methotrexate does not cause inferitility but can cause birth defects. My doctor said you have to stop taking it when planning a family. I am interested in seeing another doctor for a second opinion on treatment. I live in NYC does anyone have someone they can refer me to?

Alexis

28 May 2009, 09:50

Nice news, admin.

Dee

26 May 2009, 03:20

I have ben on METHOTREXATE for 9 years. I also take lansoprazole, celebrex, sulfaazine, paracetamol folic acid. I have RA bad in my feet and wrist have had many ops on my feet and now have metal pins in all my toes... I am about to have an op on my finger but have been told i will need both wrists done within the next few years.I have injections but try to only have one a year. Can you advise would diet help stop the flare ups at all?

Glyn

02 May 2009, 11:02

I was diagnosed at 14 with RA, had the usual drugs, now i only take pain medication; most drugs gave me side-effects of varying degrees, none really helped significantly. I was prescribed methotrexate a few years ago but had severe reaction with my kidneys. Later i found out it is usually only prescribed to those not wanting children or over child bearing age because it could impare fertility! Not something I was told and when I asked about this I was told it wasn't a recognised effect. I was not happy with that response. Anyway, my experience is that alot of the drugs do cause significant side effects for very little result; the drugs are extremely potent. Not enough is known about RA and i feel better in myself on just painkillers. If anyone can get by on the minimal of drugs the better. Whilst being treated I also felt 'ill' and in a strange way 'became' the patient, now i have nothing to do with consultants (and haven't for many years) and treatments etc I feel more normal, just someone who's stiff but gets on with whatever i want. I'm not saying ditch all drugs, but always try to use the minimum, ask yourself if any taken are REALLY doing anything significant; if you are getting breathless Jessie I would seriously consider coming off your drugs if you don't get a clear answer from your doctors, breathlessnes at 27 is not normal! Regardless of you having RA, and if it's from your RA they should be looking into it QUICKLY. I know RA can affect organs so it may be your RA but if it's just come about after starting the drugs you describe I would seriously talk to your doctor and threaten to come off the drugs if you don't get a straight answer or tests to clarify. Hope this helps, let me know what happens :}

Jessie

30 Apr 2009, 09:33

I am 27 years old,was diagnosed with RA summer of 2008.I have been taking methotrexate,prednisone&hydoxychloroquine.I was recently at the Drs for trouble breathing,they said it may be a side effect to meds. or the RA has started attacking my lungs. Has anyone had problems like this? I am very short of breath when walking to far or going up stairs.

gary

29 Apr 2009, 16:26

god bless the uk for are national health service at least we do not have to worrie aboute thecost of the best drugs to take.ive just been diagnosed with ra im 37 and just reading up on it any extra info would be great.............

Kevin

23 Apr 2009, 09:38

I've been diagnosed 8 years now with RA. The first 6 years were filled with the usual cocktail of methotrexate, folic acid plaquinol, sulphasalazine, celebrex and prednisone. I was weened off the pred and celebrex after the first month but took it during the worst of flare ups. 2 years ago, after more frequent flare ups I was introduced to Remicade. In my case this was Heaven sent. I have had no moderate or major flare ups in 2 years. As for the methotrexate, I too wanted to be off it. It has been explained to me however that this medication is key to keeping us in a remissive state once we attain it. So for me, I am staying with it, as my quality of life, with this potentially crippling disease is great.

Elizabeth Morgan

22 Apr 2009, 12:37

I had a severe reaction on my third Remicade infusion. I had muscle and nerve spasms and was unable to stand up or move the lower half of my body. They stopped infursion and gave me injections to stop reactions but it took awhile. I was scared to death and have not gone back on any biologics. A couple of weeks before that I had a skin rash but Dr said it was not related to Remicade. I think it was.

I had preeviously taken Enbrel and had no problems. (other than too expensive when insurance ran out & rached "the donut hole")

Ellen Galo

22 Apr 2009, 08:26

Reply to Nel: I have two sisters (one older, one younger than me) who have Polymyalgia Rheumatica. The standard treatment seems to be Prednisone. One sister had to go up to 15 mg daily to start, and has now cut down to 7.5 - she hopes eventually to stop altogether. The other sister I have less detailed information about, but it has helped both of them immensely. (I have RA myself, and am on Enbrel & Celebrex).
Reply to Charlotte: I tried Remicade and didn't like having to drive 70 miles to the dr.s office, plus I had some side effects. I love Enbrel, I used the vial dose kit (mix it up myself) and I do not find it difficult to give the shots. I was shown how to in the doctor's office. The first one I did at home kind of freaked me out (hard to be the patient and care-giver at the same time) but after that, I mostly look forward to it! I think the quality control has improved too - less trouble mixing it, and sharper needles give less problem. People tell me that the autoinjectors hurt more. I can control how fast or slow I inject the Enbrel. It's not difficult, just takes a little getting used to.

Charlotte

14 Apr 2009, 18:59

Enbrel shots are twice a week, Methotrexate is once a week. Enbrel shots can be very painful if you use pre-mixed. I recommend you to ask for the one that you mix yourself, they are less painful.
Methotrexate injections are ok, you use very small needles.

Nel

11 Apr 2009, 15:51

I meant to add that I also take metrotrexate and folic acid..plus 7 other meds. Some for the heart and Higy Blood P.

Nel

11 Apr 2009, 15:48

I have an auto immune disease, but they don't seem to know which kind, since there are over 80 different types..they think maybe polymyalgia Rheumatica. I can't walk up steps and hard to get up from seated possion. And hard to walk very far..
I'm now starting to get stiffness and back ache when I get up in the morning and a couple of fingers are sore..one has a lump on it and they are turned...seems that that would be RA..
I can only take a small amount of tylenol as I have an Atrial Fib. heart..now what!!
Anyone have my problems? thanks..Nel

mary

04 Apr 2009, 14:05

in my last comment, forgot to mention if it is a side efects, falling my hair, itch all my body and head specially at night only for a moment but is very strong, also my leaps are very dry, I ask my doctor but she said is kind of allergie, but this happen since I take methotrexate, and my foot burning

mary

04 Apr 2009, 13:50

I'm in methotrexate and a folic acid for almost 8 months, since the last 4 months add prednosone, my joints mulformation stops, my pain, I'm doing exercise every day, my doctor tappering me with monthly blood test, also I have osteoporosis (mile) for what i'm taking alendronate, what worries me for how long I'll be able to take all this medication or if I ever have any side effects, thats really scary me. I'm going to move to another state and the cobra it doesn't cover me, I'm still have to take a blood test monthly, what I'm I suposed to do?
thank you

peg

31 Mar 2009, 16:34

Husband diagnosed with LGL; confirmed
when enlarged spleen removed. I need
answers and can find little infor. Can
you help direct me to information?

PAT

31 Mar 2009, 13:58

I AM 52 YEAR OLD FEMALE THAT HAS BEEN TAKING METHOTREXATE WITH FOLIC ACID FOR TWO YEARS.I inject myself every seven days.I would like to get off the medication but I already know the result my right index finger is curve some what.my dr.has said he needs to keep a watch on my hand.also I must do exercises with my hands grasping a rubber ball doing repetitions 25x a day.I hope and pray that this disease won'nt cripple me as it has done to my dad.unfortunately my ra is hereity.

Judi Margolis

30 Mar 2009, 20:02

I have been diagnosed with RA and Osteoarthritis. I also had gastric bypass 7 years ago and am taking methotrexate 25 mg/ml weekly as well as mobic and plaquenil on a daily basis. Is there any research on malabsorption from gastric bypass and effectiveness of these medications?

Charlotte Robinson

30 Mar 2009, 13:52

My doctor wants me to go on shots or Remicaid. Are shots taken weekly or daily and do I have to give them to myself.

Holly Dean

03 Mar 2009, 21:10

I'm at a stage now where my RH specialist is thinking I need to go on Orencia, Remicade or Rituxan. Regardless of which one the medicine will be much more expensive than the weekly Enbrel injections I'm currently taking. Are there any conclusive results that one of the three medicines is more effective than the other?

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Scared by Side Effects

Scared by Side Effects

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