Life after methotrexate is much better!

By amy's compassion Tuesday, March 31, 2009

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Okay noone's RA life is perfect nor is it a carbon copy of someone elses. But if any of you are sick from the methotrexate and are contemplating going off of it, please know that it may be a very positive change for you. I feel so much better. Yes, my fingers are swelling and painful but that is incredibly better than being confined to bed all weekend because of nausea and dizziness. My rheumy gave me a script for Arava but I'm not filling it right now. I just can't take anymore meds at the moment. Please offer any comments that you may have and thank you so very much for sharing with me. Blessings.

RA + meds = fatigue, lack of exercise and saggy summer body *_*

Comments (12) | Add comment

Lene Andersen, Health Guide

3/31/09 8:00pm

I hear you. I was on methotrexate for quite a while and in the end, the side effects just got too awful and I switched to Enbrel (which worked wonders). Congratulations on feeling better!

I do want to encourage you to fill the prescription for Arava. With your RA flaring again, not taking medication means that you risk permanent damage to your joints which will decrease your ability levels and mobility. I understand that it's hard to get your nerve up after having had a bad experience with one medication - it's very difficult to face the possible side effects and the possibility of disappointment (and to hope can be terrifying). We all make our own decisions about what's right for us and right for our disease, so ultimately you have to figure this one out on your own. But please do consider not just the benefits of being medication free, but also the risks.

amy's compassion

4/ 1/09 5:23am

Hi Lene, I'm going to fill the script for Arava, as I mentioned to BJ below. You both have similar advice regarding the possible long-term damage that may well occur should you not be medicated for the progression of this systemic disorder. With that said, it does feel so good to not feel totally sick. I forgot to mention the neuropathy that I was beginning to feel - my fingertips felt like cotton balls. Have you experienced that and if so, what is the cause? That has also subsided. So I'll be visiting my pharmacist today with the script in hand. Many many thanks for taking the time to advise. Blessings.

Lene Andersen, Health Guide

4/ 1/09 11:51am

I didn't experience neuropathy, but I believe it's a possible side effects of methotrexate, which is after all a chemotherapy drug. It sounds like you body definitely didn't like that drug, so it's a good thing you went off it. I hope Arava will work for you!

bj in pain everyday

3/31/09 10:09pm

I am so glad to hear that you are better. I am on Arava. I had very little side effects. I did get diarreah that lasted a month but it has past. Arava alone did not work for me I have a difficult case according to my rehumy. So I am on Arava, and Enbrel. I have again had very little side effects as well.

When I went of MTX, I did not want to take any meds, my new rheumy convinced me that I needed to. He laid it on the table and made me see that i I don't take something I will have permanent damamge. Also, the sooner you take the Arava the sooner it will work, it can take several months to work.

I am so glad you feel better, I am so happy that you rheumy saw you can't live on MTX. Even if you don't want to take the Arava now, you should fill the script and let it sit on your counter until your ready.

amy's compassion

4/ 1/09 5:16am

Okay I'll follow your suggestion about filling the arava script in case I get brave enough to go for it. Hey and thanks so much for the congrats! It seems a very long time since I felt well!!! Hooray for small pleasures!!! ---Amy

amy's compassion

4/ 2/09 4:18pm

Just letting you know that I am just feeling so much better since getting of the MTHX. Still haven't started the Arava but I know I will have to sometime soon. I hope you're doing great and feeling good, too. Blessings.

Michelle

4/12/09 10:18pm

Hi Amy, I was on methotrexate and prednisone, to begin with when I got diagnosed 2 years ago. The prednisone made my face blow up, caused rashes on my face, & the injections I endured for 6 months, but they just made me too sick the following day.

I then went to Arava, which wasnt too bad, very few side effects but not combating the pain.. and I refused to go back to prednisone for the pain.. she then put me on SSZ which she said I would have to up the dose each week, & push through any symptoms, after a month of hell I rang her and in tears and said I could not cope with the nausea and headaches any longer. She told me to stop taking it immediately, the next day I was still sick & from then on I have been feeling really well. But the pain is pretty bad in my hands, wrists & feet now. The arava is not doing enough, I am taking voltaren for the pain, folic acid & nexium.. Counting down the days till I my next appointment, hoping she can figure something else out for me.

Very hard not to get depressed, people dont get it, as hard as they try.

Try to stay positive! Thinking of you.

amy's compassion

4/13/09 2:24pm

Hi there, Michelle: So sorry to hear that you're suffering so. It seems some ra people find the right meds quickly while others (like us) have to go through many before finding relief. I wish the prednisone had done the trick for some of your symptoms - that seems to be my tried and true med for some reason (a very low dose but only a few side effects within a year's time). The med or meds are just around the corner that will help improve the quality of your life. It is ridiculously difficult to explain how you feel to others that haven't experienced any of this so just keep communicating on this board. I truly know how hard some days can be for you. By the way, I still haven't started that arava - I feel so much better having stopped the methotrexate that I don't want to rock the boat. After reading your post I'm happy I haven't started taking it. I sure hope your dr's appointment results in a good drug combo for you. Here's to feeling good!

Holly

4/14/09 1:46pm

I agree my methotrexate rips my stomach apart and makes me very ill. I get so tired of taking meds that I went off of them in December but sadly the RA pain got to be too much. I hate every week I get soo ill from the meds, I get sick of taking meds. I hate pills and I hate being sick. I am happy to hear that you are doing good, hope it stays that way.

amy's compassion

4/15/09 5:08am

Sorry to hear that your pain returned after dropping the meds. So far I've been lucky but I know the ra symptoms are just waiting around the corner. But like you I hate all the meds. Take good care of yourself.

Anonymous

4/21/09 4:30pm

I used Methotrexate several years ago, and it was simple debilitating! One of the most awful drugs I've ever used. I stopped on my own and told my Dr. to forget it. I felt like I was just living a shell of an existence. I'd rather feel RA pain anyday to the mind-numbing process of nothingness. Believe me; you will be the better for it.

terry

4/22/09 6:40am

I also was put on Methotrexate with the hope of being one of the many who are helped by it. I have never been so sick in my life. My RA pain was compounded by all the side effects and I just knew that this remedy would kill me sooner than it would help me. I went back to chinese medicine. Dr Ma told me that yes, they do have herbs that help with auto immune diseases without the harsh side effects. I have been drinking his tea since June 2008. My everday pain started decreasing by Nov 2008 and today I am basically pain free. I am a touch stiff in the mornings, but nothing that would make me wish to stay in bed. A year ago my feet were so swollen that I could barely walk. My hands are still very weak and hurt if I use them, but it is a minor pain that goes away quickly. I have flare ups still and take an Aleve for them, but it is only 2-4 times a month now. Even though the crazy pain of RA is not with me everyday, I can still feel the disease is still active in me. I exercise at least 3 days a week and do pilates instead of weights to stay strong. You can email me if you like at motley92@hotmail.com, just put RA in the subject line so I know it's not just junk. The chinese medicine has really given me my life back.

Life after methotrexate is much better!

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