So another month, another drug to take. As my CRP is consistently above 50 my rheumatologist wants me to take other stuff. Has anyone taken mtx and leflunomide together? Are they effective?
Also, has no one found a cure for PsA yet??
I was just reading something about MTX and leflunomide, namely that they should not be taken together. I was just switched a few months ago from MTX to leflunomide, and my arthritis is much better, as is my energy level. Side effects? More manageable than constant nausea I guess.
I am on both, and yes, I too have read that they shouldn’t be taken together. My dose of leflunomide is only 10mg, which I gather is on the low end, and I take 20mg of MTX a week. Side effects, nothing much. My liver counts have been OK, except once (and that was my own fault, long story, I won’t do it again). So I gather from this experience that my liver’s walking a tightrope. (Enjoy that bit of imagery!)
Has it helped? Yes, moderately. My feet have gone from excruciating to uncomfortable. (I still have numbness and burning in them, though, and it’s now working its way up into my calves.) And next week I’ll be seeing the surgeon about my painful hip (which they say is osteo, but I’m not so sure).
All of that said, I do not like taking this combination, and the stress it’s placing on my liver.
I'm amazed at how different PA treatment is from country to country and even doctor to doctor. My rheum had me on mtx for 4 weeks just to satisfy my insurance company, then I put on enbrel. Recent research is showing that MTX is mainly ineffective against PA, so I don't understand why doctors are so insistent on pushing it for so long?
PA is not RA, it's similar yes, but it's not the same. RA responds to MTX, and apparently PA does not. I guess that's the problem with having a "rare" disease. It gets lumped in with a more common disease, in this case RA.
How much joint damage does one have to suffer before they merit effective treatment? Do you have to lose a knee, two knees? How about a finger or two. Throw in three toes for good measure.
Oh yeah, I'm sure you don't need a biologic until AFTER you've been taken out of the workforce and gone on disability. Socialized medicine may be fine for seniors, but for working adults it's terrible. I'm sorry for my rant, I'm just seeing too many posts where people can't get biologics because they can still walk. It's terribly unfair and I think it's short sighted. Mortality rate isn't the only measure of a population's health.
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
Gwenneth, that rant was in no way directed at you at all. I just hope your doctors get things sorted out quickly and without putting you at any serious risk.
I was on mtx for about 3 months when my Rheumy stopped it and started a biologic but I have really good insurance. Later when one of the biologics was waning she added mtx weekly to try to boost the effect, 22.5 mg which i inject. I think it helps but was not enough for me by itself. I would love for them to do some studies of being used with a bilogic and at higher doses. Gwenneth- has your Rheumy discussed starting a biologic with you.
Yes but I am in the UK and we are constrained by NHS guidelines. So whilst all my medication / treatments/ blood tests/ rheumatologist visits are free I still have to meet certain criteria to get onto enbrel. The rules state that something like mtx doesn’t work and I have 5 joints that are swollen/painful before I can have it. I did have 5 but the mtx controls it all a bit and I am down to two problematic joints hence rheumatologist can’t prescribe enbrel. Tbh I’m not sure I would want to take it for only two joints!
i was on mtx and had really bad side effects. constant fatigue and no appetite mostly. I am now on Arava and it has been working a lot better! maybe not the most ethical thing to do but since you mentioned the restrictions...what's to stop you from saying you have more problematic joints than you do? how would they know apart from feeling for the swelling since most of hte time nothing shows up on x-rays until there is a lot of damage. Or how would they know if you stopped the mtx and got the needed 5 joints that way? NOT saying that you should do this, but it made me wonder how other countries actually "enforce" or ensure that the guidelines are met.
xvanex - this is true. I'm the situation could be manipulated if required. My CRP is certainly high enough!
Andrew, you’re right about how widely protocols seem to differ from country to country. I’m in Canada, and here, there are also differences from province to province. All doctor’s care, surgery, etc. is free (or rather, pre-paid!). Drugs aren’t, until you reach a certain (pretty high) deductible. I have insurance which covers virtually any drug an MD prescribes, although I have a 10% co-pay. So in theory, my rheumatologist could just prescribe Enbrel, and my insurance will pay for (most of) it.
I would love to be on a biologic, but my rheumy thinks I’m not bad enough, and she is very very conservative, so I’m on Arava. Hard for some people to believe, but in our socialized medical system, I am completely free to choose my own doctors, so I could, in theory, go doc shopping until I find a rheumy who’d be willing to put me on Enbrel. In reality, though, my freedom to choose is restricted by a specialist supply and demand problem: the wait to see a rheumatologist is about nine months. So switching, in the hopes of getting the drug therapy I want, isn’t so easy. Besides which, the rheumy is a lovely woman who I really like, and goodness only knows what it would be like with someone else! Sometimes I wish I could have another rheumy, but then I remind myself to be careful what I wish for!
Each system/country seems to have its own sticking points: for some it’s insurance company protocols, for others, government protocols, and yet for others, doctor shortages or financial hurdles.
Whatever way you cut it, wherever you are, finding a solution for our PsA isn’t a walk in the park. Yes, Gwynneth, has no one found a cure for PsA yet? And is there a Santa Claus? LOL
No cure yet that I know of, but if you are near the DC area in May, I'd love for you (or anyone out there) to join me in Walking to Raise Awareness.This one is just a walk, no running. If you don't live near DC I believe there are arthritis walks going on all over the country this spring through the arthritis foundation.
Sorry I can't help with any of your other questions though.
The US healthcare system isn't perfect, but people of working age tend to have commercial group insurance through their employers. My health insurance benefits are designed with the employers needs in mind. An employer's needs includes having healthy employees who can come to work every day and who aren't always putting time and energy into their joints. That means that even having one joint not responding to MTX is enough to put the patient on a biologic.
Socialized healthcare is designed to meet the needs of voters. It will have good coverage for things everyone is afraid of, not rare disease that hurt you but don't kill you. What you get is care that meets the needs of seniors and middle-aged people who didn't take care of themselves, but it doesn't have much concern with a few odd individuals healthy so they can work.
All joints good = happy patient
One joint hurting = hurting patient = unhappy, unproductive patient
Why don't Canada and the UK get that?
Gwenneth, you could maybe try for a drug study? There's at least five drugs in phase III trials for PA. They all show promise. Two are already being used for P, Cimzia and Stelara. They certainly all work better than MTX.
No health care system is perfect. Myself, I would rather be in a system which is designed for, and under control of voters (that would be me 
!) than in a system under the control of an employer (if I had one) or a systerm which has as its bottom line shareholder value. Differrent strokes …!
Gwynneth, I’m guilty of hijacking your thread. Sorry!
Back to MTX and Arava …
I can honestly say on the whole I’m happy with the NHS system here in the UK. All people are treated free of charge regardless of social status, wealth etc. People can also opt in for private healthcare is they wish to pay for it.
True we do not get straight onto a biologic but we are all aware that our funds need to be safeguarded, if we fail on 2 DMARDs, whether that be allergic reaction, unable to cope with side effects or meds don’t work, we have the NICE guidelines to promote us on the a biologic medication.
Sorry Gwynneth, for hijacking. I’m on MTX and I’m happy with this med even though I’m now on the max dose. My next step will most likely be on to leflunomide before a biologic med…I will have a long relationship with this disease and wouldn’t want to dismiss any med that could help me however old it is or how cheap it is compared with newer meds
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Most voters don't really have in their minds that they could contract something like RA or PA and become severely disabled. Nor do most voters know how much it hurts! So the treatment protocols for PA will emphasize efficiency, or cost effectiveness instead of the best clinical outcome.
When I decided my knee had a serious problem, I called an ortho and got an appointment that same week. I had an immediate MRI and cortizone shot.
When the ortho finally seriously suspected it to be inflammatory disease, I had an appointment with a rheum for 3 weeks later that same afternoon. I decided that was too long, so I called the rheum and begged and pleaded for something sooner. It turns out they had a opening three days later and I took it.
I went to the rheum, I got another cortisone shot, and I was put on MTX with an aim of adding Enbrel four weeks later, which I did.
I didn't have to have 5 joints messed up while still on MTX and other inexpensive DMARDS. After a quick trial with MTX I was put on the good stuff. I won, and my employer won, and I'm happy. I didn't lose a single day of work.
There was a time when I thought govt sponsored healthcare was the way to go. Now that I have PA, I'm scared to death that US healthcare will go that direction. I really don't want uneducated retirees deciding what is medically necessary for me.
When and if you get laid off or change jobs, lets revisit that especially when you get first COBRA bill. Then again when your employer gets the annual increase running about 25% P/A they decide to raise the annual copay to 10,000/family or drop prescription coverage. They could move to an HMO or PPO which have far MORE restrictive protocols than "socialized medicine by far. 5 joints? That's one finger with Dactylitis 4 joint's and something else.
I remember my first Rheumy visit and I told her to be Gentle as I was private pay (I have a 25,000 deductible and went adjunct at the U) She said GOOD, we can treat you quickly. We avoided the studies, x-rays imaging PT etc. saving thousands.
The average American with PsA and standard insurance has to pay copays reaching his stop loss (if on a biologic) somewhere in the neighbor hood of 5 -10 thousand per year. Factor in that he has to do the same for his dependent coverage and that health insurance is not free. He either pays a premium or has his wage reduced 75 cents for each dollar in healthcare coverage covered by his employer.
I’m envious of the treatment you received, Andrew, really I am. You are very lucky to have a great employer with great insurance. And I can understand that you’d fear a change of direction in US healthcare. But, with all respect, I think that what you really need to fear is the day you lose that insurance. Then what? Will you join the millions of Americans who try to cope with their chronic conditions without specialist care at all, and using OTC medications? From a larger perspective, on measures of health (such as infant mortality and life expectancy) USA ranks far below other western countries with socialized medicine. And that, while spending vastly more on health care, per capita, than any other nation on the planet.
All that said, I wish I could get off MTX and Leflunomide … just bringing this thread back to Gwynneth’s original discussion, before a mod bans us! LOL
Interesting discussion everyone but I’m still not sure whether mtx and leflunomide will work! Am plucking up the courage to start a new thread about shingles. Am worried that it may turn into a thread about the best way to roast potatoes
Use goose fat btw
Ps on the private healthcare/NHS debate. I started seeing my rheumatologist under the private healthcare tthat was free from my employer. My rheumatologist asked me if I would mind moving over to NHS treatment as it makes it easier for her to get all the relevant treatments and departments working together! Amazing.
Promise, nothing about roast potatoes. LOL (Oh wait, just one thing, duck fat is great too, sorry about that, and while I think of it, use King Edward potatoes.)
Who knows whether Arava and MTX will work – you’ll just have to give it a go. Just be careful with your glass of wine, and have your bloodwork done monthly. Do let us know how you do on the combo.
BTW, what’s your dosage? I’m on 20 mtx and 10 leflunomide.
Yes, your experience with NHS/Private is amazing! Oh, and Andrew, Canadians don’t get the private option. One system for all. (Unless you’re in Quebec, but that’s a whole other story.)
25mg of mtx and 10 leflunomide.
Hmm duck fat. That would be good.