Methotrexate Not Working. Next Step?

Hello. After being diagnosed a few months ago with RA, nothing has helped me feel any better. I've been on methotrexate for 4 months, cymbalta for 3 months, and lyrica for 2 weeks. Oxycodones help slightly, but only mask some of the pain.

My last x-ray a couple months ago revealed bone damage, so I'm worried that my continued pain is a sign of possible further damage. I'd like to try a biologic, yet my RA doctor continues with the current meds. Apparently the insurance companies require a few months of MTX before they consider a biologic (because of the high cost).

I'd like to hear other's thoughts on what route I should take in regards to med changes, etc. I'm completely confused because I've yet to find any medication that has helped one iota. Other meds I've tried with no success include: prednisone, baclofin, flexirol, tramadol, efexor, ldn and valium.

Please spare me the holistic recommendations. I've tried it all, including restriction diets, turmeric paste, boron, cbd oil, accupuncture, Quell tens unit, pain creams, and dozens of supplements that promised pain relief but were nothing but a waste of money. I'm looking for prescription medication recommendations.

p.s. My anti-ccp levels were a massive 2,400 last time I had blood work done. My other levels were neutral. I've been tested for lyme and everything else under the sun. I have lychen planus, erectile issues, lethargy, inability to gain weight, anxiety, low libido, lack of appetite, and all over joint and muscle pain (especially in jaw, lower back and neck). Thank you.

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  • What dose of MTX are you on? And as a single therapy or in combination? I'm also sero-positive and find that triple therapy of MTX, hydroxy and Sulpha works for me with no side effects.

    But shame that your doc is resistant to the idea of biologics as it seems that the are life savers for some who don't respond to any of the traditional DMARDs. As to which one, well that's impossible to judge until more research is done to tailor drugs to individuals....

  • Hey HelixHelix. I'm taking 7 pills of 2.5mg of MTX once a week. If you don't mind my asking, what made you choose to go the triple therapy route instead of a biologic? I wonder which route is safest, and which has proven to be most effective in studies. Thanks for your reply. I'll ask my doctor about triple therapy. I have an appointment monday.

  • Because the UK health service is free at the point of use there are more controls over costs. So you can only be prescribed a biological if you meet a threshold and because I have naturally low inflammation markers I never quite made the grade even when my disease was at its most active & aggressive. Since I am a bit scared of biologics I didn't argue too much (and once my triple therapy started to work then there was no need to).

    However I've read a lot of research that now shows that triple therapy is as effective as Biologicals. I think when biologicals first started to be used they became the new wonder drug, and triple therapy fell out of favour and was viewed as "old fashioned". However that is now changing again as people realise it can be as good. Obviously if you don't respond to the traditional DMARDs then biologicals are the way to go.

    Be aware that doctors have their own views, and I know that some feel that triple therapy doesn't work. But the research shows otherwise!

    As to which is safest, it is all very individual. I have a long history of serious lung problems, so the increased risk of infections with biologicals scares me. Plus I like unpasteurised food. On the other hand, the traditional DMARDs can have bad side effects and cause more problems with liver & kidneys. But, fingers crossed, I've had no problems in 6+ years now so it suits me just fine.

  • Hey HelixHelix. Since I haven't responded at all to MTX, do you think the triple therapy would be a poor choice for me? I haven't researched the triple therapy yet so I'm not informed on the subject yet. I will have to read up on it when I have some time.

    Based on past discussions with my RA doctor I'm guessing she's going to want me to try MTX injections or wait longer to see if it will work. I think that's a stupid route to take considering I risk further damage considering I'm still on chronic pain. I'm not sure I trust her suggestions considering I think doctors are influenced by the insurance companies and taking the cheapest route rather than the most effective. I feel like she's playing games with my health. Anyway... I just wanted to get your opinion on what route you'd take if you were in my shoes.

    It seems you too have the system caring more about money rather than health. Good to hear you've found a solution that works for you. I hope you have continued success with your current meds.

  • MTX is the corner stone,so if that's not effective for you then it may not be the best approach for you. However, 4 months is not very long in RA world - here they like you to keep trying for 6 months on a therapeutic dose (i.e. over 10mg/4 tabs). Have your bloods shown any improvement, as if they haven't then that strengthens your arguememt to move on.

    All in all it took a year to get me stabilised, so it can take an agonising endless time. Good luck.

  • helixhelix What I find strange is this... If we are still in pain after 3 months, it seems that joint damage is still occurring. It seems that the doctors would take a more strong approach to stop the pain/inflammation more quickly.

  • Pain doesn't automatically mean joint damage. During the first year post diagnosis I was in the most pain ever - hardly able to move, sleep, walk, etc etc. And no joint damage. A while ago I had a small'ish flare that lasted a couple of weeks, and left me with bone erosions. This disease is seriously weird!

    But yes it would be good if the doctors seemed more concerned about pain. Among your mix of meds do you have an anti-inflammatory? Some US names are different from UK so can't tell.

  • helixhelix Thanks for the reply. I was under the impression that pain did = damage because the pain was being caused by the body fighting itself and the joint/muscles. I appreciate you clarifying this. I think I got that impression from my first RA doctor. Regarding the anti-inflammatory, I have tried a couple in the past with no success. Nothing, even prednisone has helped. Actually though... I've been on a prescription strength ibuprofin the past couple of days for a tooth ache. And I'm getting tylenol in my Oxycodone pills. Not sure if they assist with inflammation much, but I was under the impression they did.

  • Perhaps this article will help?

    rheumdoctor.com/what-are-th...

    Best,

    Lucy.

  • Good article, thanks

  • That was a good article. Thank you.

  • Hey Lucu11. Thanks for the reply. I appreciate it. I have an appointment Monday with my RA doctor. I'll ask her about a trial, triple therapy or possibly going on Humera / biologic. I think they are required to try MTX for a few months first, so I'm at the point where it's pretty obvious the MTX isn't working. I do have good insurance luckily, so much of the cost of the expensive biologic should be covered I hope.

    Thanks again!

  • Has to be biologicals I think.

  • Hey Hawker955. Yeah, I'm going to push for the biologic or triple therapy. Thanks!

  • It is not unusual for some doctors to not want to prescribe certain drugs...this is absurd! This is your life! Good luck...let us know!

  • Agreed. Thanks.

  • Ask your doctor to prescribe a biological...if you are in the U.S. He can do it. Otherwise find another doctor! You should not have to suffer thru all those mess to find what may work.😊

  • I agree. I'm demanding a change Monday. The fact that I'm still in pain means that I'm still experiencing damage. It's bullsh#t in my opinion that anyone should have to ruin their body so the doctor can get a pat on the back for saving insurance companies money. Thanks.

  • I have had 3 infusions of Actemra, tapered

    Prednisone from 8m to 6m in two months. Pain is gone, still some fatigue. Jury is still out, but after more than 3 years I was ready to try something else. Ask your doctor. Good luck😊

  • That's good you found some relief. Prednisone didn't work at all for me. Just made me sick feeling. Plus I thought it was only for short term. Is the Actemra your long term solution?

  • I am in the US and it was the insurance company that makes us go through hoops before biologics. I had a shoulder replacement before I started them.

  • Damn. What a shame. Did the biologics help you?

  • Oh poor you, I have found that you have to just keep on and on , I tried methotrexate and was really ill , unfortunately it is about the cost and we should be able to have whatever we need to make life bearable, I hope you get what you want and obviously need soon , stay strong.

  • Thank you

  • With what the medical world already knows about methotrexate, it boggles my mind that some health systems "require" people to take it, even if its not working. MTX in the long run with scar the lungs, if its not working I wouldn't take it. In the long haul, mtx can and does do more damage than good. Yes, it helped my symptoms, but now I have RA-Lung (Interstitial lung disease) and there's no reversing that. MTX would have to be forced down my throat now. Good luck, and I hope you find something for your relief.

  • It's a sad fact that we are stuck between a rock and a hard place. Left unchecked the disease can seriously damage your lungs and heart as well as cause deformities. But the drugs can also have serious side effects. So our choices are not easy ones. I hope you have a good medical team looking after you to keep you as well as you can be.

  • hi helixhelix! At this point, after 12 years, I do now have a great medical team. A wonderful rheumy and my GP who I've been seeing for 23 years, and I've recently added a pulmonologist. You know...my husband and I were having that same conversation just a few days ago. How sad it is that we have to have this, but even sadder, the drugs we take to manage it, in the long run will do us in. Like prednisone, I'm dependant now. If I stop taking it, I'll die. So I live with the horrendous side effects. Now, I'm very passionate about getting the word out concerning this dreadful disease, that's its not just another arthritis, that it can be deadly. Saddest part? Most doctors don't even know, and we have to "school" them. And the biggest reason is because when RA'ers die, most times the death certificates do not list the RA as cause of death, its usually "pneumonia" or an "infection". when the truth of the matter is the "infection" would not have happened if not for the RA. Death by RA is seriously under reported, and I believe, just one reason why its not given the respect it deserves, nor the research funding. RA gets only 1/12 of the funding that Lupus gets. Sad. Living every day to the fullest! :)

  • You make some great points. It's crazy that RA doesn't get the attention it deserves. When I tell someone I have RA, they usually say something like "yeah, I have some arthritis in my hands too". They don't understand why we can't join them for a weekend, or go hiking, etc. They don't understand the pain and lethargy that comes with it.

    Hell, even the prescription marijuana efforts here in NY don't even recognize RA as one of the qualifying diseases even though it's one of the most painful things you can experience. RA isn't even recognized as a disease in many accounts. The fact it gets so little funding like you mention is quite sad.

  • You are in NY and able to get oxyocodne. My RA Dr doesn't think I need more than naproxen even though I still hurt. Also I think now chronic pain is a condition for medical marijuana but insurance doesn't cover the cost. Talk about frustrating.

  • Debkimly I agree completely... marijuana helps me with appetite and sleeping, yet the drug peddling doctors will only prescribe non effective drugs like lyrica and cymbalta. I don't get it. They trash talk marijuana despite studies showing it's effectiveness in helping with many ailments... especially mary jane with high cbd levels. Here in NY, they finally allow medical marijuana for certain diseases yet I don't believe RA is one of them. My pain doctor told me I had to quit smoking MJ in order to keep getting the pain meds. The logical route to take should be to get me a prescription for medical MJ and see if it helps reduce my pain which would allow me to get off of the pain meds.

    There is no common sense in the medical world. MJ is safe and basically without dangerous side effects. It has been proven to help with parkinsons, glocoma, seizures, appetite, sleep, nurilogical disorders, pdsd, etc. Even the cancer society has shown it to kill cancer cells in certain testing. I'm sorry you are unable to get a medical MJ prescription. Maybe one day the law makers who control our medical options will get a brain. I hope you find some relief with your pain.

  • Thanks for the comment. I asked my RA doctor about the lung and heart issues associated with MTX and she said not to worry about it, and that it's rare. They said the same thing to me about Accutane and Prilosec when I was younger. Now they eat their words. It's sad that we have to take a poison to make us feel better.

  • Do some research, and you will find its not that rare. Matter of fact, heart and lung issues are the number 1 and number 2 killer of people with RA, respectively. I read a medical article very recently that said out of 200 autopsies done in RA patients, 80% had some form of lung involvement. That's the problem, doctors are not taking this seriously. If my first rheumy had been doing yearly chest xray's, my ILD would have been found long before it got as bad as it was. Generally, by the time you notice the symptoms, the ILD has been simmering for a long time. Please please don't take this lightly. I am terminal because I did, and I had a rheumy who thought the same way, "its rare". Just because its rare, doesn't mean it won't happen to you. Anybody on mtx should be getting an xray at least once a year.

  • Wow... thank you. I've done quite a bit of research into RA and I wasn't aware of this. I'll definitely do more research into this. Thanks again.

  • I just found that statistic. It says the following: "Though cardiovascular disease and infection are responsible for the majority of deaths in RA,10–12 10%–20% of deaths appear directly related to pulmonary disease13–16 and, in patients with RA and clinically significant pulmonary involvement, over 80% of deaths are due to their lung disease."

    So it appears that the 80% figure is for those with RA AND pulmonary issues. But still, it seems it's a very big deal. I also read where RA sufferers live 10 years less on average. I can see that. I feel like I'm dying at 37.

  • Dear Needforname,

    I am so sorry for your frustrating situation. This is a dilemma for so many. Doctors want to spare their patients ( and themselves) the anxiety and helplessness that RA diagnosis means by downplaying the effects and efficacy of the meds they are offering, hoping the patient will react well to the meds and that their body has the strength to cope with their ongoing stress on organ functions. This in my opinion is not fair towards the patient. Everyone should have real help and enough time to understand what the risks and benefits are in their individual situation before choosing their line of treatment. It is also very hard to understand why patients are told to continue their mtx medication after it has become evident that it isn't working and infact making the patient suffer even more not just with pain and progression of the disease but with the ill effects of the med.

  • Hey Simba1992. Nice to hear from you. Thanks for your kind words. Yeah, it is very frustrating. Seeing my RA doctor for 10 minutes every 3 months doesn't exactly provide peace of mind or a sense of support. It seems like I should be getting more frequent vitamin d testing and x-rays to see if my bones are still being damaged.

    Last time I went in for an appointment I had a list of questions. The doctor stood up and began walking towards the door as I was asking my questions... as a hint for me to stop talking. It's a shame really. I'd switch doctors again but I'm running out of options. Living in a small community doesn't offer many options. I'm sure many others in this forum are completely familiar with these scenarios unfortunately. Anyway... thanks for your reply. Hope your doing well.

  • I had pretty much the same experience with my first rheumy which actually forced me to educate myself and gain a better understanding over my situation on my own. After over a year of research and experimenting with diet I finally found the website of a internationally wellknown scientist who helped me connect the dots, here you find information that really helps you understand what is happening in your body and how you can support it.This website has a forum where very knowledgeable people discuss and are both helpful and analytic. In other words I have finally found a treatment model without drugs that is really helping and feel quite well. You could have a look, even though I can well understand that you feel you've tried everything. I hope you will find help soon. Simba

    Here is the link

    raypeat.com

  • Checking it out now. It's great you found a no drug approach.

  • Methotrexate worked for me at first and then in combination with Hydroxyquinoline I was almost pain free for 2 years. I did eventually get on a biological Humiria which has been fantastic for me and I was back to playing golf, and football within a few months. Problem as it was explained to me is you have to have a high disease activity score for at least 8 weeks on a triple dose of methotrexate , Hydroxyquinoline and Sulphazolodine (which I could not tolerate) to get funding for the biological which costs in the region of £10K a year. My Rhumatologist was very helpful as I was borderline with the disease activity score for funding, but refused to give me steroids to keep the score high. A few very painful months but was worth it in the end. It took just over 3 years to get effective medication for me. I hope you will get there in the end.

    Interesting you mention erectile issues as this is also something I suffer from although this may be the meds as much as the RA.

  • RichardG Good to hear you finally found relief. It's sad to hear how many people have had to have hip replacements, knee surgery, etc before they could get on the biologics. I have endured bone damage while on methotrexate, so it's not working as the doctor promised it would. Apparently money trumps life. It's sick really.

    Regarding the erectile issues, I've had some trouble for years. Not sure why. I think it's from a drug called acutane I took when younger. The drug companies knew of certain dangers they hid from the public. I'm not sure if ED was one of the, but forums are full of people who took the drug and experienced ED issues.

    I was still able to function, but the cymbalta really has made the ED worse. I told my female doctor about this and her answer was to double the cymbalta dose. I try to be optimistic, but my history of doctors with illogical treatment recommendations has turned me bitter and untrusting. I hope you continue feeling better. Sorry I'm so negative. Maybe one day I'll experience a reduction in pain and be more optimistic.

  • I just wanted to thank everyone for your feedback to my question. I went to see my RA doctor yesterday and told her the MTX was not working and I'd like to try a biologic. She tried to get me to try injections first but I used the info you all provided me to help sell her on the idea that I should be on a biologic. For example, I shared with her the info that folks like myself with high anti-ccp and bone damage have better results with a biologic. I think that bit of info was enough for her to start the biologics sooner than later. Thank you!

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