Methotrexate – My Full Circle Journey

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It has been 5 years since my first RA symptoms showed up. My first Rheumatologist (who I only saw twice because he scared me) wanted to start me on Methotrexate injections right away. He freaked me out! Being a nurse who gave chemotherapy grade Methotrexate (MTX) infusions for leukemia patients I wasn’t going to start injecting it myself without a second opinion.

The second opinion doctor rejected MTX as a therapy for me because my liver enzyme lab reading and subsequent ultrasound of my liver showed I  was not a candidate for MTX. I had elevated liver enzymes and a fatty liver brought on by years of poor diabetic control. My new rheumatologist felt the toxic risks to my liver were not worth the benefit of therapy compared to other treatments we could try. Fast-forward to the present and I’m now on MTX injections. In many ways I feel like I’m starting over at square one. 🙂

Last fall, my primary care physician (PCP) was so frustrated with the type of rheumatology care I had received, he put me on MTX himself asking, “what do you have to lose?” My liver enzymes had been within normal limits for over a year. I’m diabetic so those lab values are drawn every 3 months religiously to make sure that the diabetes and the treatment for diabetes isn’t causing liver failure. I completely trust my PCP. He is a MD Internal Medicine doctor with vast knowledge of my disease processes. He was right. What did I have to lose? I’d plowed through a slew of disease modifying drugs and biological agents with poor results over the last five years. I submitted to treatment and while we searched for a new rheumatologist, He started me on three 2.5mg tabs once a week on Saturdays.

The nerves I’d had in starting MTX five years ago were gone. I figured I had faced more significant fears by injecting biological agents that can cause lymphoma. (Sometimes it’s not good to be a nurse when you get sick yourself. You know too much!) I started my MTX with a good attitude. I always took my weekly dose with a meal to try to avoid any gastrointestinal (GI) upset. It did not make me sick to my stomach in the beginning, but a few hours after I took my oral dose I would hit an invisible brick wall with my energy level which resulted in a feeling that I HAD TO lay down. If you have ever had a Benadryl for allergies, you might recognize that feeling that you just have to lay your head down. It was fairly common for me to sleep 4-6 hours on MTX day and through the night. This fatigue superseded the fatigue that comes with autoimmune disorders to the nth degree. I recognized this was a type of chemo fatigue I’d seen in my oncology nursing career. Some patients refer to it as “the MTX hangover” Almost immediately after starting MTX, my left hand (my worse RA area) started to improve significantly. For the first time in years I could actually see the bony structures of my knuckles and the trigger finger in the fifth digit (pinky) subsided. Because I wear a insulin pump for my diabetes I’m not allowed to use steroid therapy with MTX because steroids can greatly increase blood sugar in non-diabetics.  MTX was the only treatment I was taking for RA other than prescribed NSAIDs. I had come full circle, back to where I started treatment five years ago. MTX alone was not putting a major dent in my symptoms, but it was helping with the number of hours I had morning stiffness and the degree of stiffness present in the smaller joints.

My doctors gradually boosted my dose of MTX from three tablets to four then six over a 6 month period, checking lab work closely with every increase trying to get to a therapeutic dose range for RA without raising my liver enzymes. Once I hit six tabs I began having nausea that came on so suddenly about 45-60min after a dose that I could not control it. After a fit of violent vomiting, I would then have to lay down for my MTX hangover nap. I started having harsh flares because I wasn’t getting the full benefit of the MTX due to the vomiting. Symptoms came roaring back. Unfortunately this was happening in the recovery period of having two stents put in my heart with complications brought on by RA. My new rheumatologist discontinued the oral MTX and started me on injections that are equivalent to the oral dose I was taking. There has been no pain with the injections and I’ve not experienced any nausea or vomiting. In addition, the severe fatigue I had on the tablets has lessened significantly.

The MTX injection prescribed is preservative free and comes in a multi-dose vial.  In researching this, I discovered that preservative free vials are less likely to cause an allergic reaction. The vial is stored at room temperature. The medication is injected with a very small needle in the fatty tissue. I can’t even feel it go in which is a pleasant change from some of the biologic agent injections I’ve had before that burned like a bee sting when auto-injected with a pen. I’m very careful to use proper aseptic technique in using my vial, drawing the medication up and injecting it. Since I’m a retired nurse and a diabetic use to self injecting, I did not have to go through the in-office nurse-patient training on giving an injection. Don’t let that worry you if you have been prescribed injections of MTX or considering it. It’s a very simple process that is very similar to a diabetic injection of insulin.

Someone close to me asked me recently if I wished I’d started with injection of MTX as the first doctor prescribed. It is only human to wonder what might have happened, but I don’t allow myself to dwell in the past. I have to trust that things worked out the way they were intended. It’s okay to wonder, but I don’t allow myself to linger in that thought pattern. I know that RA has taught me a lot about what is important in life and has helped me grow as a Christian. I feel I made the decision that was right for me at the time. It was only through additional testing during my second opinion appointment that we found out my body could not have handled the MTX injections at that time due to poor liver function. Had I blindly went forward with MTX injections then, I could have permanent liver damage now. The liver can heal itself to some degree and while I was exploring other therapies that is exactly what happened. My liver is healthier now than it was in the past. God’s timing is perfect.

I’d urge anyone starting a new medication therapy to do your homework in researching the medication, side effects, and know if ongoing testing is needed to monitor your health while on drug therapy. Don’t let a medical professional force you into a choice. You know your body best of all and if you feel uncomfortable about a proposed therapy then discuss it with a trusted doctor or pharmacist. Also, don’t dismiss trying a therapy you’ve tried before or passed over when it comes to RA.  You might find yourself in a situation like me where it is the right time for a therapy previously ignored.

What you need to know about Methotrexate as a therapy for Rheumatoid Arthritis:

  • MTX is technically classified as chemotherapy but it is given in very low doses for rheumatoid arthritis.
  • Take the time to learn about this medication from your doctor and pharmacist and discuss the pros and cons of taking the medication by mouth or by injection. Be sure you are comfortable giving your injections using proper technique before you attempt home injection if that route has been prescribed.
  • Make sure that your doctor checks your liver enzymes at least every 3-4 months while on therapy to make adjustments to your dosing according to your lab values. MTX can become toxic to the liver and you may or may not have physical symptoms of toxicity. Some rheumatologists may ask for a ultrasound of the liver and may require a negative pregnancy test before prescribing therapy and randomly during the therapy.
  • Responsibly secure your medication. A dose of MTX could be very dangerous for a child or older person if taken accidentally. In addition, the medication may have specific storage and disposal instructions for oral and injection dosing. For example: Know what to do if you accidentally broke a vial.
  • MTX can lower your immunity so take the proper precautions as you would when on any other immunosuppressive drug.
  • Have realistic expectations about your drug therapy. Treatment for RA often involves a trail and error period of trying therapies for up to nine months. Get your pain under control first before you decide if a therapy is not working for you.
  • Keep the lines of communication open between you and your rheumatologist. Your doctors should be working with you collaboratively to come up with the best treatment plan for you.

Additional Information: http://www.drugs.com/methotrexate.html

 

 

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2 responses »

  1. Hi Mischelle, I have very strong empathy and compassion for you and can honestly say, “I know what you’re going through”. Like you, my initial introduction to MTX 10 yrs ago was oral tablets. I got violently ill, so fatigued, no appetite and actually had to lay my head down on the desk when I got there. The bright side was I lost 30 lbs in 2 months on the verge of too thin. The Dr never suggested injections. From there I was put on many tablets (Arava), injections, infusions and now Xeljanz. The Xeljanz is not helping. I have had rapid weight gain, headaches, dizziness and more swollen joints. I am going to call my new Internist now to ask her for a scrip of the Butrans patch to get me through the days. I have been in agony for almost 14 yrs. I just stopped the Xeljanz and on 6/19 when I see another new RA doctor (my 4th one in 5 yrs in the same practice) I am going to ask for the MTX injections. Maybe this time via injection, it may help. Like you, my faith in Jesus has been so tested. Lately I just want to sleep and not wake up. I’m so happy I found you. You are wonderful and sharing. God bless you. I will keep you posted.
    Love, Jeanette

  2. Jeanette, Thank you for your response. It is always a blessing to find someone who understands what this journey is like because they have been there, but on the other hand you hate to know that someone else is having to endure the torture of this terrible disease. Look me up on FaceBook, if you have an account. You don’t have to go through this alone. GBY.

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