Changing meds

By Country Girl Monday, March 30, 2009

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For 9 months, I've been taking 2,000 mg sulfasalazine daily, 1,000 mg naproxyn daily, added 7.5 mg methotrexate weekly a month ago, and recently increased methotrexate to 12.5 mg weekly. I'm still hurting!!! At what point do you move on to something else? How long does it normally take to get relief from methotrexate? Will I ever have a day that I'm not in pain?

Thanks to all of you for your replies, understanding, support, and for sharing your real life stories. This site is "wonderful" and I'm so thankful for it, and for you. It is my prayer that your needs will be met this day!

Fever blisters in my eye!!! Has anyone else ever had this problem?

Comments (7) | Add comment

tessie

3/30/09 5:06pm

Unfortuantely, but obviously, there is not one magic pill for RA. So much is going on with RA that it takes many types of medicine to get it under control.

I have been taking the max dose of MTX (25mg weekly), Sulfasalazine 2000 mg, and Plaquenil. Now we have added Humira. And I still hurt.

What is hard to come to terms with is that treatment of RA is not just about pain relief. A lot of people are given prednisone as well because it does address the pain and inflammation while the other drugs do their work. Personally, I am glad my rheumy and I do not use prednisone because while it masks the pain, it is a dangerous drug. (Sorry to those who take it! Don't shoot me!!) With all the new drugs for RA now, we have a greater chance of actually modifying the disease instead of treating the symptoms. That is good news for our long-term outcome, but it still means we have to endure some level of discomfort (and outright pain!) until RA is under control.

Most people, I think, would say that the first year is the worst. Are you taking anything for pain? I have Darvocet and Percocet to help.

Lene Andersen, Health Guide

3/31/09 1:20pm

Methotrexate takes about 6-8 weeks to kick in. You may want to ask you doctor for some prednisone to help bridge the gap for a couple months to help with the pain. Yes, prednisone has side effects, but right now, the most important thing is to protect your joints from further damage. Besides, many people use prednisone quite happily with very manageable side effects for years. If your pain is still unreasonable, ask for better painkillers, as well. Keep in mind that once you have RA, you can probably expect to have some pain on a daily basis, however, the question is whether your pain is manageable between your DMARDs and the anti-inflammatories and other painkillers. If you feel that your pain and RA are not managed well, it may be time to look at other options.

Given how long you have tried other drugs, you may want to start a conversation about bigger meds, like the Biologics (Enbrel, Humira, Remicade). If you feel that your rheumatologist is not treating you aggressively enough, you can also consider getting a second opinion. When you have a chronic illness like RA, it is essential that you become an informed and assertive advocate for yourself. Your doctor is part of your medical team, but you are the leader of that team - it's your body, your life and therefore you get to make the decisions. Trust the messages your body is sending you - if they say that you have waited long enough, you have waited long enough and it's time to put your foot down, gently, politely and firmly. If your doctor doesn't listen, find another doctor.

Country Girl

3/31/09 7:18pm

Lene, thanks so much for your replies. You have no idea how helpful you are, not only to me but to numerous others.

I have another question, I have a huge burning sensation from my knees all the way down to the tips of my toes. I've had it in my hands and wrist before too but it's worse from knees down. What could it be? It burns and and stings (like when your arm or leg goes to sleep)at the same time. My sed rate was within range on 3/20? Can you still have inflamation even when your sed rate is normal?

Lene Andersen, Health Guide

3/31/09 8:22pm

It's funny (peculiar, not ha-ha) - I've seen that question about a burning sensation several times in the last week or so. Unfortunately, I don't have an answer for you. My experience with burning pain throughout the body as opposed to "just" in joints comes from having fibromyalgia, but you don't mention if you've been diagnosed with that. If you want more information about fibromyalgia, check out our Chronic Pain site's area about fibromyalgia and if it sounds familiar, you can bring it up next time you see your rheumatologist. None of us here in the side of doctors and therefore can't interpret blood test results. However, Joy Buchanan, the produce of MyRACentral is in the process of getting some answers together about blood test results in that post should be coming in the next week or so. I don't know enough about sed rates to sound even reasonably intelligent on the topic, but I know it's possible to have RA if your RA factor is negative, so perhaps I goes for that number as well. Again, your best bet is to talk to your rheumatologist. If you can't get an appointment relatively quickly, give him/her a call.

And thanks so much for much for your kind words!

kathyglpn

4/ 6/09 8:36pm

I occ. have a normal sed rate too even when my joints are huge and painful! The last one was in Sept and prednisone helped. I also have a high C reactive protein and a chronically high white count even when my sed rate goes up and down! I am neg for RF but my doc feels that I meet enough of the criteria to call it "Seroneg RA". I quit the prednisone though! I got a couple of infections while taking it that shouldn't have been any great big deal, but I like to never got over them! It is Scary.

I am too scared of the new disease modifying drugs that are coming out for other side effects they may or may not have.

I do have a pain mgt doc though and am on meds and they help but even so I still hurt. I have a real prob. with severe aching and swelling from my knees down kind of like the pain you decribe.

Good luck, you may have to consider pain meds too.

flutterby

3/31/09 5:11pm

That's a good question. I guess it depends on the individual as well the doctors. I have been taking .9cc of methotrexate which started at .3cc in September, Lodine, Folic acid, Prednisone 7.5 mg (whcih started at 30 mg I am on my way down), Enbrel. I am still hurting so he is changing me to Humira. I was diagnosed in August. I started sulfasalszine first but had an allergic reaction. So I guess it is just a puzzle game. I hope your pieces fit together soon and feel better!

Anonymous

8/25/09 5:58pm

I was diagnosed with RA in January 2001, so I've had the "pleasure" of trying more than a few treatments. The drug combination that is working for me now is 20mg of Arava (instead of methotrexate) daily, 200mg - 400 mg of Celebrex daily, 5mg of prednisone every third day, 2g of sulfasalazine daily and a weekly injection of Enbrel. I just recently dropped Imuran because of low platelet issues. Enbrel is a drug that will make a tremendous difference in your pain level and inflammation. Advocate for yourself and ask your doctor to go ahead and prescribe it for you. The real reason you are still suffering is because your doctor is not using the most effective medicines. He/she is letting you fail therapies and suffer during this time (that is the old way of treating RA). My adult daughter was recently diagnosed with RA and my rheumatologist immediately prescribed Enbrel for her. She is now running again and doing well.

I used methotrexate for years starting with pills and then injections. MTX makes you feel horrible. After seeing other RA patients who were using Arava with Enbrel improve greatly, I felt that I had nothing to lose by trying it. Luckily for me it worked.

Good luck!

Changing meds

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