Just Diagnosed/Meds | Arthritis Information

I have just been diagnosed with R.A. and am truly scared stiff of taking the medications Dr has suggested. She wants to take "aggressive treatment" (ironic inasmuch as I have been waiting six months to see her!!). The medications are plaquinil and methotrexate. I have started taking plaquinil but not methotrexate. I said I would think about it for two months. I have read the side-affects which are downright scary but would appreciate anybody just sharing their feelings about the meds and if they are helping them, how long does one stay on Methotrexate etc. The latter seems to be the one prescribed the most these days and maybe I am over-reacting!!!

I also read that chest Xrays/Liver tests should be done before one starts the medication. The Dr. didn't mention that to me?? Thanks.

Hi Gillian,

First take a big deep breath. It'll take a little while for the whole thing to sink in. There's a lot of people here who have had RA for quite awhile and we are more than willing to be here when you have questions or are just overwhelmed by it all. Taking "aggressive treatment" is the treatment of choice. They want to try and control the damage from being done in the first place instead of the old treatment of waiting until damage was done before using the "disease modifying" meds.

You might want to reconsider and start with the methotrexate much sooner. MTX is a very old drug that they have 40+ years of experience. First as a cancer treatment and now as treatment for a number of other diseases. It has a good safety record and is even used with kids.

I used MTX for 20 years before I had to stop using it. It worked really great for me. I had to stop because I developed shortness of breath and if I had kept on that would have become a permanent condition. After about 12 years I began to have high levels of liver enzymes periodically and would have to stop the MTX for a short period of time and then I could take it again.

You have to take folic acid when you take MTX and you have to have lab work done on a routine basis. Otherwise thats it. It can be taken orally or injections. I gave myself the injections because the oral med wasn't tolerated at all by my stomach. Its not hard to do and it gets to be really routine.

You can depend on us for help.

Barb

Thanks Barb for your input, much appreciated. I will have lots more questions I am sure so no doubt we will be talking again. I really lucked out finding this site just by chance. It's just what I needed, talking to people going through the same thing. As far as the tests they are referring too, most doctors will take a preliminary blood test before starting the methotrexate. Blood work is then usually done once a month to check the liver counts. I couldn't it myself, just seemed to feel worse than when I was off of it. It quite often takes a bit of trial and error to see what works for you. One of the best things you can do is write down any questions you might have or any symptom you might notice at the time so you don't forget to ask the doctor when you're there. Quite a few people keep a journal of how they are feeling. It will take awhile to sink in. I was diagnosed a year and a half ago and still have problems adjusting to the idea from time to time.

Hello Gillian,

I've had RA for about 2 years now.The doctor put me on Plaquinil for awhile and than on Methotrexate. I couldn't close my hands into a fist or walk down stairs,so i was willing to take anything. The side affects i get are, headaches,mild nausea, fatigue etc. But i can handle them and i'm able to make a fist, walk down stairs, and really just live a fairly normal life. I'm even able to golf and play in a league. Learn as much as you can about RA and don't be afraid to ask questions of your doctor.

good luck to you!

Gillilan, Your post sounds almost exactly like my first post just a few weeks ago! I was just diagnosed in February. The Rheumatologist wanted to put me on Methotrexate right away, and when I read the warnings I was afraid to take it! The pharmacist pointed out that MTX has been used for many years so there's a lot of data on it (unlike some of the newer meds). Both the Rheumatologist and my family doctor basically said, "You have to take something to prevent joint damage." They both also said they would take it themselves and they'd give it to their own children if necessary, so I bit the bullet and took it. I opted for the injectable form to hopefully avoid nausea and be easier on the liver. I give myself the injections once a week, which is really no big deal at all. I've probably done about six shots now and haven't noticed any side effects yet. Unfortunately, I haven't noticed any real improvement in my symptoms yet either. But, they recently upped my dose, and it is a slower acting drug, so we'll see. They do have to check your labs often and they did take a chest x-ray before I started the MTX. He did say we may have to add other meds like Plaquenil or Sulfasalizine. One problem is that there is a shortage of the injectable MTX, and I'm a little worried about that because I really don't want to take it in pill form. I also take Relafen (anti-inflammatory) and Darvocet (for pain). I was a very healthy person my whole life until November when my feet started aching, and it's kind of been downhill since then... But both doctors are optimistic about the available meds and they believe whole-heartedly in "early and aggressive" treatment. I can really empathize with what you're going through because I'm in the same boat! I think you'll find lots of people on this site who understand and are happy to offer support and advice. If "misery loves company," you're in good company here!! Good luck.Thanks Sandy, all this advice helps. I have started plaquinil only but the decision to add Mthx will be made in the coming months. They advise to take folic acid with it so I don't know whether you are taking it. The injection seems to be the way to go and seem to be the way most people take it. I too was pretty healthy up until 7 months ago. Keep me posted if you think we can share aches and pains!!! Good luck. Gill

Gillian;

I take Methotrexate and I haven’t really had too many bad side effects that make me wish I wasn’t taking it. Now Prednisone….that’s one the helps you tremendously but you wish the entire time you are on it that you weren’t. I didn’t worry too much when I first started taking Methotrexate mainly because I’d spent years switching from one NSAID to another, then one “disease modifying drug” to another. I’d been on Plaquinil and Sulfasalizine for a while (along with lots of random cortisone injections) and I welcomed the mention of Methotrexate. I too was worried at first; but my doctor assured me that with the scheduled lab work they will catch a problem before you will.

When I was first diagnosed 11 years ago they didn’t use “aggressive treatment” right away. At least they didn’t for me. They waited, and waited until they had exhausted just about all the options. You’re luckier than many of us that had to wait to get treatment that actually helps.

Good Luck Gillian. Keep coming back here. This is a neat group. A support system that you can’t even get from your family. As much as our families love us all….they don’t understand what we go through. Here everyday you’ll hear of someone else that’s feeling or felt the exact same thing that you have. It helps you not feel so alone. Keep your chin up! I just want to chime in with a couple thoughts. First, being aggressive doesn't necessarily equal taking MTX. I know this isn't an option for everyone, but I went from Plaquenil to Enbrel and skipped MTX. You might check with your insurance company to see what their rules are for authorizing Enbrel. My first insurance company didn't require pre-authorization for Enbrel (i.e., using MTX previously), and then my second insurance company did require it, but because I was already on Enbrel they went ahead approved me for continued use. I agree though with the other posters that if Plaquenil isn't enough, adding something more aggressive would be a good idea.

To give you some peace of mind and maybe help in your decisons, I have been on methotrexate for 5 years and I had the same concerns that you have. I delayed taking it for 4 years because I made the mistake of reading up on it in a PDR at work. Needless to say, I decided that I would wait. Looking back I wish that I had taken it sooner. I originally was on 4 tablets, 2.5 MG every Saturday. I was told to pick a day that I wouldn't be working. This was in case the medication made me ill. I also was prescribed 1 gm folic acid 1 a day. I asked the pharmacist the reason for this and he told me that one of the reasons was to decrease side effects. After 5 yrs I am now on 6 tablets per wk and 2 of the folic acid per day. I can truthfully say that I have never had any reaction to this treatment and I am now taking plaquenil 2 per day in addition to the others. My rheumatologist has been very informative and although I do have some deformity in my hands I feel that had I trusted her in the beginning I might have delayed the progress of this disease. I can honestly say that I have not experienced and unbearable pain. And I work a 12 hr graveyard shift in the emergency room at the local hospital. I have times when I get stiff and sore in my right knee but it is only when I sit too long. I know that you have to keep moving. Try to limit your stress and watch your diet. Information is your best ally. Read up on the positive and negative foods and activities. My Mother was severely crippled with this disease and by the time she was in her mid-forties she could not walk. She developed RA before much was known and very little research was going on. The medicines given to her was trial and error. Mostly error. Her deformity was terrible. I am now 63 and still walking and working so I must be doing pretty good. In closing, try not to be fearful. This could keep you from getting the treatment that could benefit you. Best of luck to you Bobbie
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