Methotrexate Journey

By tinmangal

2 min read

I was on Leflunomide and was having breakthrough pain, some mood issues; nothing major. At the time, however, I believed these hindrances to me very significant. So the rheumatologist put me on methotrexate.

My experiences with methotrexate

Methotrexate started working to relieve my pain. I'd found my go-to drug for RA. Then, the rheumatologist suggested I start injections. Ok. I'll do it. This triggered unbearable side effects which included ringing ears, stomach discomfort, headaches...

I had planned yesterday, to continue the tablet methotrexate that I went back to but decided to reach waaay back and rejoin the Leflunomide regimen. 20mg once a day. I take Pepcid for the slight indigestion Leflunomide causes.

So, January 4th, I went back on Leflunomide. Methotrexate, with its toxicity and unbearable nausea; ringing ears and headaches? Good riddance!!!

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I hope I can save one person from even trying methotrexate. It is the pits!!!

I STILL experienced pain right along with the icky side effects; so no trophy for anything!!!

Exploring other avenues to treat RA symptoms

Cloudy days; I've noticed a dramatic increase in symptoms. Oddly enough; when I am unaware of the lack of a sunny day? I'm fine.

Seasonal affective disorder lamp

But, if I pull the curtain back and it's cloudy, my hurts start. With that revelation, I recently purchased a SAD LIGHT. I found it on eBay at a terrific deal!!!

There are several videos on YouTube about pain and the lack of sun. An hour of this bright light on a cloudy day first thing in the morning is recommended. I plan to use mine to jump start my day!!!

CBD

Yep. I have discovered many new things about myself on this RA JOURNEY. One thing is that I've always been an achy person, so now I've got a diagnosis.

The second thing I've discovered is that you've got to try new things and not be afraid to retry old things, too.

I'm stocked up with CBD/3%THC GUMMIES, and; I'm off to the post office today to pick up my order of RHUS TOX HOMEOPATHIC TABS. I've also researched TISSUE SALTS and discovered that TISSUE SALT #4 helps with inflammation.

What works for me

My days of trying one thing at a time is over. These days I try a myriad of salts, lights, baths, etc.; all in the attempt of living my best life.

I'm allergic to copper, so my copper wearing days are over. I used to wear it without any adverse reactions; but that changed.

Rolling with the flow is key and essential to surviving life in general. And we RA folks do that splendidly. Flares are simply AWFUL!!!

When I flare? I hate the world, yes. But, good days lie just ahead if you can muster the strength to crawl towards them. Have a FLARE PLAN ready especially when you feel great!!!

Be prepared! ❤️

See ya later!!!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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RHall Community Admin
<inline-mention username="tinmangal" user-id="3125889"/> thank you for sharing. It's great you found some alternative treatments that have worked for you. I know that it can be trial and error and for some, it may not be the best approach. So finding what is right for you is always a win! You definitely aren't alone in experimenting with other alternative treats. Here is a story that you may appreciate (<a href='https://rheumatoidarthritis.net/living/accessible-pain-management' target='_blank'>https://rheumatoidarthritis.net/living/accessible-pain-management</a>) as well. Warmly, - Reggie, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> team member
tinmangal Member
Reading the link you shared. Thank you!!!
1. Effie Koliopoulos Moderator & Contributor
 <inline-mention username="tinmangal" user-id="3125889"/> You're welcome, let us know if you need anything else. -Effie, team member
fordownr Member
Methotrexate is another one of the drugs you "love to hate". My 1st Rheumy had me on 50 MG once a week. Had to take it on a weekend because I'd spend the next day in bed. My current Dr has me on 10 Mg once a week (no side effects) and that's just for insurance reasons (won't approve my infusions unless I'm on methotrexate). The RA journey has a lot of commonality amongst it's victims. However, there are just as many differences as we are all different and our bodies all react differently (especially to some of the "industrial strength" medicines they want us to use.
1. Erin Rush Community Admin
 I think you sum it up perfectly, <inline-mention username="fordownr" user-id="3225631"/>! Many medications used to manage RA symptoms can qualify as drugs you 'love to hate', although Methotrexate might be the top one! Thanks for sharing! Best, Erin, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team Member.
Rhupus Member
I am on Methotrexate. I have yet to experience any relief in the pain, stiffness, general pins and needles in my arms , legs, back, and face. I’m told it takes at least 6 weeks to start working. I started treatment the end of July. This is the third medication I’ve been on and it seems I should start doing better already . Between this and my Lupus symptoms my body has gone totally rogue! It’s an all out attack!
1. Lisa Emrich Moderator & Contributor
 <inline-mention username="Rhupus" user-id="9835292"/> - I forget if you mentioned (elsewhere) how much methotrexate you may be taking. Yes, it does take some time to build up and begin to start working. But there is also a wide range of doses that may be used to treat RA and/or lupus. Sometimes the injectable form will work better for some people as well. It's worth talking with your rheumatologist to see if there may be options to make some minor changes to see if those make a big difference for you. I wish you some relief. Best, Lisa
Rhupus Member
I was just increased to 6/ 2.5 mg. Methotrexate tablets every Tuesday, on the 11th of November. I see the Rheumatologist again on December 10. It was mentioned that I was started on baby doses. Considering I have complained about the same issue with general pain and not getting any better results and he says I don’t look well every appointment I’m just a little concerned.
1. christine.laaksonen Community Admin
 Hi <inline-mention username="Rhupus" user-id="9835292"/>, thanks for commenting. Your feelings of concern are ones people here know very well, you're not alone! How are you finding the new dosage to be now that it's been a couple of weeks? Have you noticed a difference at all? Please don't hesitate to bring up any concerns that you have with your doctor when you see him again on December 10th. If you're not sure about your current treatment it certainly is worth a conversation. That being said, many times methotrexate is one of stands of the first line of medications that rheumatologists start with when treating RA. I'm also sharing a link to an article about what to expect on methotrexate, <a href='https://rheumatoidarthritis.net/living/what-to-expect-methotrexate' target='_blank'>https://rheumatoidarthritis.net/living/what-to-expect-methotrexate</a>. The article has numerous comments from community members as well. Please know that our community is here for you and please don't hesitate to reach out anytime. -- Warmly, Christine (Team Member)
Rhupus Member
Looking seriously into getting a second Rheumatologist opinion. 
1. Erin Rush Community Admin
 <inline-mention username="Rhupus" user-id="9835292"/>, I think that's wise. Even if you love your Rheumatologist, it's okay to sometimes get a second opinion. And I would definitely bring up your concerns about Methotrexate at that upcoming appointment. It just may not be the right treatment for you. Best, Erin, Team Member. 
2. Richard Faust Community Admin
 Hi <inline-mention username="Rhupus" user-id="9835292"/>. As noted in this article, the average dosage for methotrexate starts at 7.5 to 10 mg per week and can be increased up to 25 a week, depending on tolerance: <a href='https://www.medicalnewstoday.com/articles/methotrexate-for-rheumatoid-arthritis' target='_blank' rel='noopener noreferrer ugc'>https://www.medicalnewstoday.com/articles/methotrexate-for-rheumatoid-arthritis</a>. On one level, it can be a fine line on giving enough time for the medication to take effect and deciding when or if it should be increased, but, given that your doctor seemed to acknowledge that you were not improving your concerns are understandable. Only you can determine if you are comfortable or not with the doctor, but I want to share with you this article from our patient leader David on how to know when to switch rheumatologists: <a href='https://rheumatoidarthritis.net/living/change-rheumatologists' target='_blank'>https://rheumatoidarthritis.net/living/change-rheumatologists</a>. I also want to note that over a decade now there has been a lot of research on the importance of early, aggressive treatment for RA. Here is one of the early papers: <a href='https://pmc.ncbi.nlm.nih.gov/articles/PMC3145120' target='_blank' rel='noopener noreferrer ugc'>https://pmc.ncbi.nlm.nih.gov/articles/PMC3145120</a> and here is another: <a href='https://pubmed.ncbi.nlm.nih.gov/21517638/' target='_blank' rel='noopener noreferrer ugc'>https://pubmed.ncbi.nlm.nih.gov/21517638/</a>. Hope this information is useful and please feel free to keep us posted on how things are going. Best, Richard (Team Member)