Methotrexate and Biologics: The Good, The Bad and Everything In Between
Let's share the good, the bad, and everything in between about methotrexate (if you have ever been prescribed it and tried it) and any other biologic for treating rheumatoid arthritis.
Effie I took your survey. Thank you for your support within the RA community. Without this I would feel lost and now feel better about my RA with others sharing their pain and experiences. God bless you and Aloha 🙏
Thanks so much! That is a survey RheumatoidArthritis.net puts together. We appreciate you taking the time to do so. It also helps us, help you all better as well. I totally agree with you on what you said. Connecting with people in this community has been a blessing. Hope you're doing great and God bless you too. <3 -Effie, team member
The good: MTX helped with inflammation (though not with tenosynovitis).
The bad: The constant mouth ulcers (folic acid did not help).
The ugly: I was on a 22.5 mg weekly dose which, after a couple years, started causing anxiety while driving on highways and, later, small roads. I lowered the dose to no avail. I had to stop because I needed to be able to drive. The anxiety stopped shortly thereafter.I'm still of the mind that it's not the drug[s] that cause anxiety, but rather the attitude towards taking the drugs. Maybe someone will do a good study on this. Yeah, I think it could be a mixture of both. Everyone's different but for me when I got off one medication my infections stopped was constantly getting sick, and anxiety lessened. Many reported the same. I think there are some studies being done, I'll have to look as I'm interested. But the mind and body connection is real- which is one area rheumatology needs to dig deeper into IMO. Also, there are many who have anxiety prior to being diagnosed with RA. It's interesting for sure. -Effie, team member
MTX was a godsend for me in the beginning. Over the years my dose was upped until it was 25 mg weekly. And then slowly it worked less effectively. Desperate, I turned to a biologic. Humira was a life changing experience for me. Now my pains are mostly from OA. I'm on Humira and low dose MTX for about 20 years now.
Hi
. Just a moment ago I posted a message in this string to . One of the things I mentioned tracks with what you said about the programs that the drug manufacturers have for copayment assistance for those with insurance. I noted that it is not out of benevolence, but rather is a way to get customers and they get paid by the insurance companies. You mentioned not knowing what will happen when you retire and this is when things get interesting. Once an individual goes on Medicare they are no longer eligible for the copayment assistance - the government doesn't allow them due to an anti-kickback law. This law makes it illegal for pharmaceutical companies to offer discounts for medications that will be paid for by the federal government. In theory, this law keeps drug manufacturers from swamping under lower cost alternatives. The problem is that, when it comes to biologics, everything is expensive so the outcome is often that retirees on Medicare can no longer afford the drugs. There are a lot of changes happening, such as caps on certain out of pocket expenses and on costs for certain drugs and there may be more changes on the horizon (see here for example: https://www.aarp.org/health/medicare-insurance/info-2023/future-medicare-changes.html). So, it is important to keep an eye on the Medicare rules, as the landscape may change quite a bit by the time you have to make the switch. Hope this information is helpful. Best, Richard (RheumatoidArthritis.net Team) Thanks so much for the link. I learned a few years ago when I was trying to set up delivery with a new specialty pharmacy that there were going to be issues once I stop working. I'm past retirement age and work because I enjoy it. When the specialty pharmacy noted my age they somehow thought I was getting Medicare benefits, and therefore ineligible, as you pointed out, for financial assistance.
The biologic companies should change the name "financial assistance" to "those without government assistance."
In the earliest MTX treatment days I took pills and the dose was titrated upward over a period of time. At the lower doses I felt fine with MTX. No nausea. As the dose climbed [over years] I would be nauseous starting a day or so after the pill and for roughly 24 hours. I never missed a day of work because of it, so it was really just a weekly annoyance, the nausea. Then I heard about injectable MTX and that it bypassed the gut and so there was no or little nausea. I was all over it. And so I was on the injectable for a few years until I maxed out at 25 mg weekly. Then my body started building tolerance and the drug wasn't working as effectively.
I talked to my rheumatologist [now retired, the phenomenal Dr. William Shiel] and asked him to please let me go on a biologic. I have latent TB, so biologics were contraindicated. I begged and he knew me well enough that at the first sign of any possible TB I'd contact him.....and so I started Humira with low dose [7.5 mg weekly] MTX to create a synergistic effect with the biologic. As mentioned before, it was a life changing event.
I used to be relatively active on several RA sites, but since the drugs have worked so well for me for almost 20 years, I really don't pay much attention to RA. I'm busy living my life. But one thing I've learned about pain and discomfort and drug reactions over the years from a lot of people with RA: they don't seem to be as pronounced in people who lead busy lives. Why? Because they're distracted. To that end, I would encourage everyone to find a passion in life and dive into it. It's amazing how you CAN be distracted from feeling lousy.I used folic acid from the minute I started MTX. However, I take folic acid daily [MTX is on Monday night]. I have no side effects with the MTX after coming down from 25 mg [without Humira] to 7.5 mg [with Humira].
MTX provides a synergistic effect to Humira [potentiates the effects].Drea, I've heard that too. I'm on Humira and MTX. My rheumatologist prescribed me a folic acid tablet to take the day I take my injection because after several years with no issues, I started to feel some nausea. Thanks for sharing your experience and knowledge on this thread. Appreciate it! -Effie, team member
