DMARDs-The People Say

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Disease Modifying Anti Rheumatic Drugs, the five words that can bring total fear or total relief to someone with inflammatory arthritis. This week we will be talking about DMARDs in general and some specific drugs. We also want to hear about your personal experiences with various DMARDs. Although it is very important to remember that every person reacts differently to different meds, personal experiences are important to many of us when deciding our treatment options. 

We had a wonderful response to our DMARD Survey. Most of you seem to have taken methotrexate (mtx) at one time or are taking it now. It wins our most common DMARD award! And the majority of you have stopped at least one DMARD due to side effects.

Let’s start this week with some of your comments:

“The Enbrel has helped me a lot. Most pain and swelling is gone. I’ve regained range of motion, and muscle strength.”

“I had to quit MTX for about a year because of Leokopenia. Resumed MTX 2 months ago with 5 mg/week and lately increased to 7.5 mg./week.”

“Give them time to work. A week or two often is not long enough to know if the drug will have a long term effect.”

“I investigated RA and treatment recommendations once diagnosed. Medical personnel seem to think that immediate treament with methatrexate is best to prevent further damage. Since my RA doctor started with sulfasalizine first, I got a second opinion from a “veteran” in the field of RA who now teaches. I paid this out of pocket. She agreed with my RA doctor about his use of sulfasalazine first. I felt reassured, and, since there is no more bone loss in my toe joints, I have to trust that it is working.

My primary goal is to keep working full-time. Since I haven’t had any typical side-effects yet from sulfasalizine, I keep on with it. However, now my sacroiliac joints are involved, with pain that is not fully relieved with VIOXX. I am interested in personal stories from those who use or used methaltrexate.”

“Arava – I’m still on it but after 3rd loading dose had a 5hour intense pressure headache accompanied by disabling nausea. (That passed). White blood count began to drop, but drs. dropped dosage to 10mg, and wbc began to climb again – luckily I got to stay on it…for now.

The docs told me it would take 4-6 weeks to get any benefit from the Arava. After the 2nd dose (there are 3 loading doses to start, and then a maintenance dose) I felt an immediate improvement in all my symptoms. If you’re looking for a new DMARD, try this one!!”

“When taking methotrexate, try to take it with LOTS of water. It really does help reduce the side effects somewhat.”

“My son, Joshua, has Systemic Juvenile Rheumatoid Arthritis. He takes Methotrexate and Plaquinel. Hard to know for sure if the plaquinel is working. He’s been on it for over 4 years. The Methotrexate he’s been taking for more than 5 years as well, but about a year ago he switched from oral dosing to sub q. Seems to have made a positive difference. Or it could just be that he’s in one of those less active phases. For the past 2 months he’s been taking sub q one week, oral the next. 15mgs a week. He’s the only person I’ve ever heard of that takes it that way. He convinced his RDs to let him try, as he was tired of all the shots. Hard to know, really, if the DMARDs are working in general, as he’s never been able to get off steroids. Between 10mgs and 35mgs per day, every day, for 5+ years. If they were really working as well as they should, I doubt he’d have needed this continuous long-term steroid therapy. But his JRA was very severe, so we deal with it. He also takes NSAIDs twice a day.”

“Sulfasalazine-The first ones I had where the big horse tablets that are not coated. They gave me horrible heart burn, yellow pee and for whatever reason they made me stink (lovely thought huh?). I’m now on the coated tablets, they’re easier to swallow, no heart burn (well, maybe a little), pee’s still really yellow but I don’t stink anymore. They worked fairly well alone for a couple of months but I still had flares at least once a week. They seem to work well with the methotrexate.

 TAKE WITH FOOD!!!! Take at the same time everyday. 7 and 7 is when I take mine. Make sure to keep an eye on your refills and that all perscriptions are called in at least 5 days before you run out!”

“don’t give up hope. They do take a while to take effect. Make sure that you take all your doses so you get the proper therapeutic level in your body.”

“don’t give up on them too soon they all are pretty slow working. Try to adjust to the side effects these are potent drugs after all & are doing strange stuff to our bodies. Always have your labs done, if you can’t afford to see the dr that often be up front & see if you can have just labs done for 2 out of 3 visits.”

“Don’t be afraid to try these drugs as they will help at some point. The alternative is not acceptable. Get educated on medications and build positive communication with physician so options are always open.

It is good to compare how meds help or don’t help each of us but its important to remember that meds affect your body uniquely. Especially important to reinforce this with newbies.”

“I try not to worry about the future effects of the medication that I am on, because my quality of life right now is wonderful because of the medications. That’s what I try to focus on.

Positive thinking, prayer, education and hope gets me by. The computer is a fantastic tool to learn all about the different DMARD drugs available.”

“Methrexate and remicade infusions they are working excellent remicade is a God sent”