Is there life after Methotrexate has failed?

General
1

Hi all, my name is Kris, and I have been a member her for a couple of months, altho not an active one. I read much of what is written, though. I am learning from you all, and your strength is an inspiration to me.

I will summarize my issues, and just say that my major issues began after breaking my hip last April. I was 41, but oh well...I can now say that I have used every mode of transportation, including a wheelchair, a walker, a cane (still use it), etc...It comes in handy, when trying to catch up w/ my 13 y.o. son! My Drs. are very proactive, as I have had a cardiac condition for 20 years, and after a short delay, as there are few Rheumys in my area, sent me to a Dr. that seems to have her ducks in a row. After reading about many of you, I can say that I am grateful that she jumped in to my case w/ both feet. She quickly diagnosed PsA, and added Methotrexate to my drug regime, amongst other things. I have been on it since 12-17-12, and had nothing but problems. I quickly went from oral to injectible, as my stomach could not tolerate it, but began to spiral downward in a hurry. Looking back, it is all so clear, but at the time, it was simply a daily dose of Hell. After a short time, my hair fell out in large clumps, (tho I didn't have to shave my legs for a while), and I went from exersion-induced nausea to 24 hour nausea. I was so dizzy sometimes, unable to lift my head, even when the motion sickness overpowered my stomach. My abdomen HURT, stomach to right side, upper abdominal pain, the headaches felt like my skull was going to implode. Okay, enough of that, you get it...I was miserable. BTW, I don't mean to deter anyone from trying it, this was just my experience.

I have been given info on Enbrel, and see the Rheumy next Tues., but am unsure whether my ins. will cover. At any rate, the Enbrel looks like it works best w/ Methotrexate usage, and I pray I do not have to go back on that stuff. Wondering if you all have some input on meds you are using, without it? I sure appreciate any thoughts! Hope you have a wonderful day!

2

I got nothing but nausea out of MTX, though not as bad as you experienced. I spend 6 months on it then demanded off. I was switched to leflunomide, brand name Arava. I have experienced an improvement in symptoms overall, and the side effects are manageable overall, seeing that I have had improvement.

My understanding is that MTX and leflunomide can be used as alternates. . . Ask you doctor if you can try leflunomide instead of MTX with the Enbrel. Or if you can just try leflunomide on its own.

3

I have not experienced the same problems as you on Mtx. You did not mention your dosage or if you were taking Folic Acid which is very important to counteract against the side effects. I have been on Mtx for 2 1/2 years 25mg and 5mg of Folic Acid. Nauseas at first for only a day or so. No nausea now, but still get belly aches and a bit of diahorrea the day after my weekly dose but nothing I can't cope with. My hair thinned but it came back after a few months.

Enbrel has made a big difference to me. I am no longer stiff in the mornings, which use to take almost half the day to loosen up. The pain in my feet has improved and I am walking better.

I have been on Enbrel for three months now. I am still on Mtx and Sulfa but my Rhuemy will probably want to cut them down once he feels the Enbrel has established itself and is working well enough. I still can have a rough day especially when the Enbrel seems to wear off a day or so before my next shot and then it takes a about 8 hrs to kick back in again.

The mtx did not seem to be doing much for me until I tried not taking it for two weeks and much to my surprise I got so much worse. I think that my PSA was gradually geting worse and this might be why the Mtx seemed as if it wasn't working when it actually was but just not well enough to get my pain level down to where I could cope.

Last night I did not sleep well because of hip pain again but I have had good relief over the past few months. I have no idea why this has come back or if I have done anything to set this pain off again.

Things will improve once you have the right medication, it may well be Enbrel. I do hope so and if not there are others. It is a terrible time getting to the stage of finding the right meds that work for you. So hang in there.

4

I "failed" MTX after one miserable dose. Seriously, my doc gave me something like 1/4 or 1/2 the normal "tapering up" dose, and I threw up for 36 hrs straight, I thought I was going to die (my husband thought so too).

There are MANY other meds out there. I've had this for 31 yrs and was only on MTX for one day :)

Right now I've run through all the meds and am back to Enbrel, every 4 days (an off label dosage).

5

I started off on the low dose too, and within 1/2 hour, I thought I was going to puke my guts out. As has already been said, there are alternatives.

6

Took mtx for years i done pretty good on the shots but when I no longer could get the shots I had to go back to the pills. I could not tolerate the pills any longer. My rheumy switched me to leflunomide and it is a lot better no nausea.

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My Rheumy had me start at a very low dose of mtx and increased it very slowly. I had slight nausea and diarrhea. When I got up to 15 mg she switched me to injectable which I have tolerated better. I do take daily Folic acid 2 mg. I have been on it for a couple of years without much problem. I have recently switched from Enbrel to Remicade. My understanding is mts helps more with peripheral joints and the biologics work best on spine and hips. Mtx is also a powerful anti-inflammatory and when I have decreased the dose at all I have noticed an increase in the inflammation in my hands and feet.

8

Methotrexate hardly works for PsA. The biologics are much better.

9

Thank you all for your responses, and information. Now I have a few more questions to ask the Dr., and a bit more knowledge. Best of all, it sounds as if there are OPTIONS. I really despised giving up, I'm a stubborn girl, and want so badly to be better, but I felt like I was dying, and had gotten to the point where all I could eat was crushed ice and chicken broth. Now I have more hope for what comes next. I hope you all have a great night, I hope you get some sleep, bella, and the rest of you, too!

10

I was on MTX alone which didn't seem to do much and then MTX with a biologic. But ultimately I had issues with the MTX. I am currently on Humira alone and it seems to manage my symptoms just as well. For me, the MTX didn't seem to make much of a difference.

For what it is worth, I am on a biologic without any DMARD. So there definitely are options. Good luck Kris!

11

Just took my fourth dose of Mtx, I know it takes several weeks to kick in, I'm only on it, nothing else. By the sounds of it no one has had any success with Mtx alone? Has anyone had success from just taking Mtx, I'm hopeful I don't have to progress to Biologics, but it sounds like that is probably the case.

If Mtx doesn't work why is everyone still taking it with Biologics, why not stop that and only take Biologics?

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tb, I have wondered myself, but figured someone must have luck with it. Actually, I was convinced the MXT was not working at all, but now have seen an increase in pain/symptoms, after having been off of it for two weeks. Whether that is because it was actually working, or the fact that I was so darn sick on the MXT that I no longer focused on symptoms of PsA, I don't know. What I DO know is that my body, overall, feels so much better after suspending this treatment (again, that is just MY experience), it is like walking out of a fog...Yes, my joints/connective tissues are more painful, but not having the daily abdominal pain and vomiting is such a relief! I am curious to see what others say re: your question...It's a good one.

tb said:

Just took my fourth dose of Mtx, I know it takes several weeks to kick in, I'm only on it, nothing else. By the sounds of it no one has had any success with Mtx alone? Has anyone had success from just taking Mtx, I'm hopeful I don't have to progress to Biologics, but it sounds like that is probably the case.

If Mtx doesn't work why is everyone still taking it with Biologics, why not stop that and only take Biologics?

13

Hi there. Im new here :slight_smile: I just started a low dose methotrexate and have read alot about it and I can say after reading I’m not too hopeful that it will work. I’m looking for a new rheumatologist. In fact, I have seemed to move backwards in treatment . I was put on humira last year and it did help . The problem is I ended up with new psoriasis. I only had it on my palms before and now am covered. I can tolerate that but my scalp is so bad I have lost so much hair. Many bald spots. My dermatologist put me on methotrexate to help. I’m hoping I don’t lose any more hair at this point :frowning: anyways just wanted to say that I do wish I could have tolerated the humira because it definitely worked on the joints…

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MTX has a higher success rate than most treatments so don't be discouraged. (discouragement has an pretty strong (negative) effect on PsA all by itself. HOWEVER it is only a piece of a treatment program. Its unfair and dangerous (for your prognosis) to consider it by itself. It can take a while to get the right combination.

Keep in mind what you read on the internet or popular press is extremley skewed. MOST people take the drugs they are prescribed, do well and move on. The folks who frequent the net are more often than not "outliers" folk for whom what nornally happens doesn't. Factor in the hysterics for whom nothing would work because their case is "different". the quack sellers who plant all sorts of misinformation. and its surprising you can believe anything. Support groups such as this usually have a few faithful, a lot of new folks diagnosed coming by for some information and then gone. a fair number of vocal outliers (who really can't handle the "truth") and the quiet majority who just like to know someone has their back.

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Thank you. I agree completely. I do think one of the first steps with everyone is finding a dr. That u feel comfortable with and who u feel u can trust to care to make the right medication decisions. I’m still looking for that :slight_smile: anyways as far as the original post. Good luck and I hope u feel better soon. and yes there are plenty of good options out there that have helped so many :slight_smile:

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Yes,, tntlamb, I think you are absolutely right. That is why I said that this was my experience...Everyone is different, and not many of us are doctors. It is so nice, tho, to get an insider's view, from folks who have been thru this, and I find that the information is helpful. And the support is important. This is really the only site I regularly looks at, regarding PsA, as I find that I appreciate the positivity of people here, and having their input really helps me ask important, informed questions of my Drs. To all of you who have replied, and added to the discussion, thank you, you have helped me immensely. I hope you are all having a great day!

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My first visit to my rheum, she said, "We're going to put you on MTX. After four weeks we're going to add Enbrel because Enbrel works and MTX doesn't. You're going on the MTX to satisfy your insurance company that you need a biologic."

Last fall the NFP talked about a recent study on MTX and PsA. The study said that MTX doesn't work. I think MTX does work for RA, but even though the diseases are close, PsA is not RA.

All that being said, in the four weeks I used it, i think MTX was helping me but the Enbrel is better and it has lower side effects.

http://psoriasis.org/news/news-methotrexate-questioned-for-psoriatic-arthritis-

Methotrexate use questioned for psoriatic arthritis

A new study shows that methotrexate—a biologic drug commonly prescribed as a first-line treatment for psoriatic arthritis—may not be as effective at slowing down the progression of the disease as commonly thought.

In the British study—the first large double-blind placebo study of methotrexate for psoriatic arthritis—half the participants were given methotrexate and half received a placebo. Neither the study subjects nor the researchers knew who was getting which medication. After six months, the researchers found that methotrexate had no significant effect on objective measures of the disease, such as joint inflammation or joint damage. However, some participants reported having subjective benefits, such as feeling better while taking the drug. Physicians note that this outcome of patient satisfaction should be considered as well.

Dr. Christopher Ritchlin, chief of rheumatology at University of Rochester Medical Center in New York, says that "the study examined a number of different outcomes and showed that traditional measures of joint inflammation did not improve."

Ritchlin also adds that the trial had "some deficiencies in that the maximum dose of methotrexate was 15 mg per week" and that the study took all people with psoriatic arthritis, even though the disease is highly variable. According to the National Psoriasis Foundation, mild psoriatic arthritis involves just one or two joints, while "generalized" disabling psoriatic arthritis affects three or more joints and puts patients at a higher risk for joint destruction and disability. Additionally, the number of inflamed joints in the study participants was relatively low.

"Nonetheless, based on current evidence, no controlled data supports the effectiveness of methotrexate for psoriatic arthritis, so health care providers should consider this fact when deciding on treatment strategies for psoriatic arthritis," Ritchlin said.

Sept. 20, 2012

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Hi Kris. I’m so sorry to hear of your “adventures”, for lack of a better word. I want your Rheumy to research low dose Naltrexone. I just started it. It originally is a drug for alcohol abuse. Those people take 50 mg pills.
I get the drug compounded at a true compounding pharmacy, and started on 1.5 mg pills. Now I am on 3mg and will currently be raised to 4.5mg. This is taken once a day.
How it works, is this: it blocks the opiate receptors in the brain, temporarily. It tricks the body into making more endorphins that stimulate the immune system. People with m.s., Parkinson’s, and even ALS are taking it. The only side effects I can think of is temporary sleep disruption either by making you sleepy for a few weeks, or making you restless when you sleep—not getting a good nights sleep. Again, it’s temporary.

Strongly urge your doctor to investigate whether this will work for you. It is too soon for me to report much in the way of results, but when I see any I will surely report them. Good luck!

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Marantha, do you think it makes more sense to take Naltrexone as opposed to biologic agents such as Enbrel proven in double blind studies to work?

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I was on Remicade for 4 years, and the only thing I got from it was a fungal infection that made life miserable. I am still in as much pain as I was while on Remicade. So, even though some here think I would be in the “hysterical” category for saying nothing works on me, it is still the truth. Nothing, so far, has brought me relief from either my P.A., or my Crohn’s, or Ankylosing Spondylitis . So, for me, I have nothing to lose by trying it.

So, I should have clarified that for people like me, who have taken many many drugs to no avail, Naltrexone is a very viable alternative solution. But, as with all meds, take it up with your doctor first.