Afraid to try meds anyone have advice?

Afraid? Are you kidding me?? I was terrified! When my rheumatologist first suggested methotrexate, I went home and thought about it, which for me includes research on the Internet. And then I whimpered and stuck my head in the sand for a couple of weeks.

When your doctor suggests the big scary drugs, you have to weigh the pros and cons - how much does your RA limit you, how big is the risk of your joints becoming damaged - as well as think long-term. These drugs not only help you function better in your present day-to-day life, but they extend the life of your joints and delay damage. Depending on your current levels of function, damage, pain, fatigue, etc., you may notice the moderate to huge improvement if you start taking the drugs.

In terms of the side effects, many are reversible (i.e., when you stop taking the medication, the side effects stop, as well). Some aren't and they are usually the more serious ones, but they are also more rare. Taking a look at the numbers may be helpful. Let's say 2% of RA patients taking methotrexate develop liver damage (I couldn't find the actual number in Google, so that's a pure guess - your doctor will be able to give you the accurate number). That means 98% of RA patients taking methotrexate do not develop liver damage (again, 98% is a theoretical number). Sometimes, if you flip it, your perspective changes and the fear lessens.

I am not arguing that you should start Methotrexate or Enbrel - only you can decide that after carefully weighing the risks and benefits. But keep in mind that your decision that is reversible - you could take one of them for a test drive to see how you feel. If you think the improvement is worth it, you may decide to continue. If the improvement isn't significant, you can stop. That's how I talked myself into starting methotrexate and for me, the reality turned out to be nowhere near as scary as what my imagination cooked up. Talk to your rheumatologist again about your fears and concerns - information is power and having all the information, although initially a little scary, can help you make a decision that's right for you.

To add on to Lene's stats on Mtx, I also found this in a publication by The Arthritis Foundation:

"Despite the list of side effects with mtx treatment, more than 60 percent of people who start mtx take it safely for longer than five years, and more than 40 percent take it safely for more than 10 years.  Low-dose mtx is an important, effective treatment for rheumatoid arthritis."

Now the people who are no longer taking it "safely" may simply no longer take it because it bothered their stomach or it ceased to be effective. Perhaps some went into remission!  Part of the stats too, inevitably include people who had other medical or lifestyle issues that came into play. Issues that may never even be on your radar screen!  People with drug or alcohol issues or even folks that may not be competent to take it correctly over time.  (My gma w/ RA couldn't understand that you aren't supposed to take mtx each day. YIKES!) I'm not sayting that accounts for all of it or anything but something to chew on anyway.

Also consider that when it comes to "the meth" it is closely monitored.  I get my liver enzymes checked every four weeks and so far so good.  If at any point it becomes an issue, I can deside at that time if and how I want to continue. 

Ooooo! I just now found an entire handy dandy chart in a John Hopkins Health Book of side effects of different RA medications and their percent of incidence.  I can share that with you if you like, but I've probably already gone on enough to be obnoxious.  Just let me know.

Now I know I'm being obnoxious but I also just found this in my book.  Plaquenil.  I don't use this one so I don't know all that much about it.  It also doesn't seem to be as commonly prescribed as mtx and I'm not sure why BUT this is what I found:

"Hydroxychloroquine (Plaquenil) may be the safest of the DMARDs.  Estimates are that only 5 percent of patients discontinue using the medication because of its side effects.  The most commonly reported side effeccts of (Plaquenil) are nausea, decreased appetite, diarrhea, and rash.  Most of these problems can be eliminated with dose changes and by taking the medication at mealtime."

It goes on to say that the biggest concern with this drug is the rist of eye problems (retinopathy). Apparently though, if you get your eyes examined as advised every 6 mos. and stop immediately if the ophthamalogist tells you to, the risk of permanent eye damge approaches 0 percent.

So yeah, maybe ask about this one, huh?

     I was really scared of all the side effects at first.  I must have went over the side effects a hundred times!  I finally came to the realization, after much research, that they have to list every possible side effect ever experienced by anyone!  I started off (after dragging my feet for 3 months) with Hydroxychloroquine (Plaquenil).  I took it for 1 month.  I had allergic reactions (rash all over, nausea, etc.) and after a visit to my Rheumy, stopped taking it.  My Rheumy then prescribed Mtx ("The Meth.).  I dragged my feet again for 1 month before starting to take it.  The huge list of side effects plus my recent reactions with the Plaquenil, toyed with my brain for a while.  I have been taking it for 2 months now, and so far so good.  My blood work it good.  It does not seem to be working as well as the Plaquenil.  Even though I had an allergic reaction to it, it seemed to make me feel better.  I'm headed back to my Rheumy in a few days, and I'm assuming we will be increasing my dosage. 

     For me, quality of life was the deciding factor.  Good luck with your med.'s.  You can do it! 

I've been off and on meds for almost 6 years. First I was so scared of what RA would do to me I took whatever they'd give me... Bextra, then Celebrex, and MTX, Remicade. I was horrified of the side effects but more scared of going without medication. Then I started having problems with elevated liver enzymes and went off ALL meds cold turkey for about 3 months. I was miserable!! I could barely hold an easy part time desk job. So I went the natural route... I got some relief from symptoms with vitamins/supplements/diet/exercise but it wasn't stopping the progression of my disease. So back to Celebrex and I managed to get by a couple years just on that (lack of money and health insurance limited my options). Now because I have extreme fatigue, can't pick up a gallon of milk, or open doors etc I know my RA is on the war path again. Soooo I went back on meds. You just have to make sure you're armed with knowledge about the medications and potential side effects and then decide if its worth it or not to take them. I'm 26... for me, meds with some quality of life is worth the risk of side effects!

I was also scared as my sister has had 2 liver transplants due to an auto immune problem. After trying 4 enbrel shots for RA 1 year ago, I acquired a respritory infection. 2 months after that I started getting a chronic breast infection. I am 53 and I never had any serious infections before.  After 6 mastitis flare ups in 9 months, my surgeon removed the infection and part of my breast.  Now I have to decide to live with the pain or try more medications.  I think I will try to live with the pain for now.

This is my experience with these drugs.  You might have a better outcome.