Methotrexate Not Working. Next Step?

[Needforname]

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.

[helixhelix]

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....

[Needforname in reply to helixhelix]

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.

[helixhelix in reply to Needforname]

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.

[Needforname in reply to helixhelix]

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.

[helixhelix in reply to Needforname]

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.

[Needforname in reply to helixhelix]

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.

[helixhelix in reply to Needforname]

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.

[Needforname in reply to helixhelix]

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.

[COFFEEPOT222 in reply to Needforname]

i was told by my rhumy to not take ibupephen as clashes with other meds i take be careful

[Lucy11 in reply to Needforname]

Perhaps this article will help?

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

Best,

Lucy.

[helixhelix in reply to Lucy11]

Good article, thanks

[Needforname in reply to Lucy11]

That was a good article. Thank you.

[hawker955]

Has to be biologicals I think.

[Needforname in reply to hawker955]

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

[Klah in reply to Needforname]

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!

[Needforname in reply to Klah]

Agreed. Thanks.

[Needforname]

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!

[Klah]

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.😊

[Needforname in reply to Klah]

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.

[Klah in reply to Needforname]

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😊

[Needforname in reply to Klah]

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?

[Debkimly in reply to Needforname]

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.

[Needforname in reply to Debkimly]

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

[Harvey20]

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.

[Needforname in reply to Harvey20]

Thank you

[chronicstitcher]

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.

[helixhelix in reply to chronicstitcher]

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.

[chronicstitcher in reply to helixhelix]

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!

[Needforname in reply to chronicstitcher]

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.

[Debkimly in reply to Needforname]

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.

[Needforname in reply to Debkimly]

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.

[Needforname in reply to chronicstitcher]

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.

[chronicstitcher in reply to Needforname]

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.

[Needforname in reply to chronicstitcher]

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.

[Needforname in reply to chronicstitcher]

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.

[Simba1992]

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.

[Needforname in reply to Simba1992]

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.

[Simba1992 in reply to Needforname]

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

[Needforname in reply to Simba1992]

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

[RichardG]

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.

[Needforname in reply to RichardG]

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.

[Needforname]

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!

[COFFEEPOT222]

i was dignosed over 5 years ago i wont go into my long story but cut short my RA came on very sudden no warning i had very bad virus in the january bad chest infection that 2 loads of anti biotics did not clear it doc said leave for another week if still bad she would put me on stronger anti biotics why she did not put me on the strong ones straight away is beyond me any way i could not wait another week as 1 day and half way in night 3am i was so bad throwing up coughing so hard and felt i was having trouble breathing my other half rushed me to A and E hospital got seen straight away i had a raging fever temp was so high i was given x ray of chest and put on drip to put fluids in me along with paracetamol through canular and was put on a ward i was in hosp for a week i was boardering pnumonia the hosp was so angry that my gp treated me like this anyway i eventually revovered only to wake up a week after with all my fingers swilen so bad i could not bend my fingers they looked like bunch bananas any way sorry ment to keep this short got diagnosed after blood test x rays and loads questunes from my new gp ( yes i changed my doctors ) with RA set me up with appointment to see rhumatolagist put on methetrexate tablets had to see rhumatolagist every week bk then after 2 weeks i had RA in my hands fingers and feet balls of my feet were so swollen so hard to walk 2 months later still just on methetrexate tablets me keep telling rhumy its not working blood tests still saying ra very active next 2 years were a nightmare i had steroid infusions 3 days on trot took 2 hours in hosp on a drip having steroids put in me looked like a red lobster by day 2 after 3rd infusion late at night i woke with pain in my head all ovwr my head bk of head too iv never experienced pain like that before worse than having a baby phoned 111 health line told them id had steroid infusions was warned if poss bad headache this was worse than bad headache in end i was up all night holding bags of frozen peas and carrots all over my head took paracetamol sat in lounge in dark by time 6.30am came i was all cryed out and so exhausted id gone to sleep sitting in chair i never woke till 5pm the evening after with just bad headache omg i was actually still alive i had bad thoughts i was dieing of fast brain tumor next 2 years as i said rhumatolagist im sure was useing me as an experiment try this medication try this one oh your having side effects ok take this tablets to combat thos side affects for iver 18 months i felt like a prisoner in my own home could bearly walk could not bearly pick things up as kept droping stuff wrists became so weak could not even pick up a 2 pint carton bottle of milk i could not do most of cooking as could not even pick up an empty sauce pan could not put preasurw on my hands at all so could bearly use broom to sweep kitchen floor i could not raise my arms so washing my hair was imposible ra was now in hands feet elbows shoulders and knees omg i felt life was so bad my grown up daughter who lived with me with her very young very disabled son helped me i dont know what i would of done with out her she cleaned house for me cooked our dinners helped bath me and wash my hair dry my back dress and undress me walked with me any time i had to go outside on my 2 walking sticks helped me gwt on and off buses trains etc i did venture out twice on my own when my daughter was busy i fell in the street bith times had random strangers help me to my feet as my balance was bad cos of pain in knees and feet knoced my confidence loads eventually after many times of telling my rhumy he needed to really think hard on what next step to my meds was going to be cos i was right on edge i by then had bad depresion was so bad my daughter hated leaving me at night to go sleep in her bed so most nights she slept in my bed with me to make sure i was ok my rhumy took notice of this plee from me for help and told me he would put me on methetrexate self injectables omg the thought if me self injecting was a nightmare but i masteded that ok and after a month was able to walk with no walking sticks slow walk as it was my swelling in knees and feet and hands went down most of the time i started going swimming 3 times a week started feeling human again still very much in pain after few months of injectables rhumy told me blood test still showed my ra was very highly active so had chest x ray yet another blood test and asked lots questunes as they were about to put me onto another self injectable called embrel i was told this should bring my ra activity down year later and still on all the tablets self inject methetrexate self inject with benepali which replaced embreal told benepali same as embreal but cheeper but still blood tests show ra highly active i am just thankful that in oct last year i felt well enough to find a part time job found one working in a supermarket and copeing on my own with my other half as we mived 49 miles away iv got a goid new rhumy and great gp life is looking up so there is good in my life now and im actually now 57 tears old and ride a 125cc mitorbike i look bk on my life when times were so bad with ra and always thank goodness for my family all the best to you hope it all works out in the end dont give up keep possitive

[Needforname in reply to COFFEEPOT222]

Dang... you had a rough time there for awhile. Crazy how it came on so quickly! I wonder if the Methotrexate injectables are more effective than the pills. Did you also try the oral before the injections?

I've now been on Methotrexate for maybe 9 months and Symponi Aria biologic infusions for 4 months, and I feel worse then ever. Nothing works, including Enbrel and steroids. Going on Maloxican today after telling my pain management doctor that the pain killers don't work. Apparently it helps with inflammation.

The fact I've been in pain for so many years and continue to be told to be patient is wearing on me. For 15 years I've been patient. These doctors are bastards. No referral to specialists. They are clueless and don't have any idea what to do with me since 4 RA drugs haven't worked.

Anyway... Hope you find continued relief with your injections. Success stories are always inspiring.

p.s. for future posts, may I suggest using paragraph breaks periodically. It makes for a difficult read with that many lines of text with no breaks. Thanks