Why methotrexate and not Humira or Enbrel | Arthritis Information

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I was dxd with RA yesterday and am quite overwhelmed by all the
information I'm coming across. I strongly believe that external factors
(whether it be food, chemicals, prior infection, etc) play some roll in my
joint problems. However, my dr. (a young guy....I thought maybe that
would work in my favor) very quickly shot down my idea of food allergies/
sensitivity and said he would prescribe Mobic and Methotrexate for me. I
told him I have no desire to take anything I don't' have to, so I would not
be filling the Mobic prescription. And that I would rather wait two weeks
(until my next appt.) on the methotrexate so I could do some research.

So, to my question. Why would he automatically choose methotrexate?
Why are the TNF-alpha inhibators not even considered? Are there other
drug options? I kind of feel like there should have been more of a
discussion about the drug options rather than he just telling me one
drug. It seems to be a common one for RA and effective, but is it the
MOST effective disease modifying drug? The side effects are quite scary,
especially for someone who is hesitant to take anything.

I'm also not giving up on the allergy thing. I'll pay to have the test done
myself if I can't get a referral for it (still working on my GP for that). And,
I have an appt. with a 2nd Rheum. Dr. basically to get a 2nd opinion.

A little about me...I'm 32, very active, swim, snorkle, dive, garden, lift
weights, etc. I've had joint pain in my feet and hands consistantly for
more than a year. Recent X-rays showed not damage to feet, hands,
wrists, and ankles and I go for MRI's on those next week. My RA factor
was 256 and my anti-CCP was 163.

Any advice or input on the drug situation would be helpful!! Thanks!

alot of times drs have to go through certain "stages" of meds so that ins companies will cover them.  From what I read the meds that he wants you to take are pretty common when you are dxd.  Good luck!  Welcome to AI!
Shannon

Sorry for the reason but welcome to the board!

Mtx is probably the most tested and standard RA med. It does have side
effects but most people tolerate it with little difficulty. You will also have
blood tests to check for any other complications.

The other biologics(Humira, Enbrel, Remicade, Orencia, and Rituxen) are
usually given after MTX proves to be unsuccessful on it's own. Generally
the biologic is prescribed along with the MTX. They are usually not given
without it. Mtx. is often just the first step. Your dr. probably doesn't
want to give you more meds. than necessary. Also, this guy sounds like a
keeper. Many people start on lesser strength drugs before working up to
the mtx. Studies show that when RA is treated aggressively from day one
the prognosis is much better.

Also, insurance companies almost always require MTX to be prescribed
before moving on to other RA drugs.

Whew...that was alot to type. I have had RA since I was s19 and I am now
30. I have been on MTX for most of that time and have had little
complications. I understand your concern but realize that for the majority
MTX proves to be the first drug to provide relief. Did your dr. prescribe
Folic Acid as well? This helps with any side effects.

Definitely get a second opinion. You can never question to much when it
comes to your health.

BeckyThanks for the replies. The insurance factor was one I'd not thought of.
That makes sense. So, it looks like methotrexate it will likely be. I'll see
what the 2nd Dr. says, but I imagine the same thing.

As for the Folic Acid, no, he hasn't prescribed anything for me yet. We're
going to talk about it in more detail in 2 weeks. I'll ask him about it if he
doesn't automatically bring it up.

Thanks, again/I was immediately prescribed Plaquinel and MTHX on the first appointment with the Rheumatologist, it's the first drug of choice really. I was scared stiff after reading the side effects which is a common reaction for most people. but the sooner you go on it the better, it certainly helps but takes ages to kick in anyway so don't waste any time.  You want to stop the progression of the disease and MTHX is prescribed for this purpose.   I had no side effects at all from it but of course that varies with each person.  A healthy diet will help but most doctors will tell you that it's the drugs that will alleviate the symptoms not the food we eat. Good luck.

JBNole97 - Hi, welcome to the board.

I very much believe that food allergies, sensitivities, leaky gut contribute greatly to our getting these diseases.  I have a friend that totally controls her PRA with diet and supplements.  That being said, it is an extremely hard road to do and many people chose to do the standard meds instead. 

Karin68 recently posted about delayed onset allergies in food testing.  Her post totally jived with a lot of my research and I'm thinking of getting the testing for myself while I try to 'heal the gut'.  You might run a search here and read the post.  Absolutely fascinating.

There is another drug option - antibiotics.  If you're interested in this option try www.roadback.org or get the book "The New Arthritis Breakthrough" by Henry Scammell.  The Antibiotic Protocol (AP) has given me my life back.

Pip

P.S.  You sound really logical for somebody newly diagnosed.  I was FREAKED and it truly showed.  :-)

[QUOTE=Pip!]

JBNole97 - Hi, welcome to the board.

I very much believe that food allergies, sensitivities, leaky gut contribute greatly to our getting these diseases.  I have a friend that totally controls her PRA with diet and supplements.  That being said, it is an extremely hard road to do and many people chose to do the standard meds instead. 

Karin68 recently posted about delayed onset allergies in food testing.  Her post totally jived with a lot of my research and I'm thinking of getting the testing for myself while I try to 'heal the gut'.  You might run a search here and read the post.  Absolutely fascinating.

There is another drug option - antibiotics.  If you're interested in this option try www.roadback.org or get the book "The New Arthritis Breakthrough" by Henry Scammell.  The Antibiotic Protocol (AP) has given me my life back.

Pip

P.S.  You sound really logical for somebody newly diagnosed.  I was FREAKED and it truly showed.  :-)

[/QUOTE]

 

Welcome! You asked about other drug options, I just wanted to second what Pip said : AP has given me my life back, too!

Best wishes and take care, Karin

 Starting with mtx (you didn't say how much) and the mobic (which one?), is the beginning of a long process of stopping your pain!! , this is very important and , of course, preventing joint damage. joint damage begins to deteriorate our joints right away. (I have no feeling in one of my little toes, from joint damage , because I FAILED to treat my disease at the beginning of my diagnosis.) I was in denial and kept thinking it must be something else....it took me 5 years to begin RA meds and the treatment. I took Plaquinel at the beginning and then mtx.

Because of an operation in Dec. last year I've had a hard time getting back to where I was (only taking a very small amount 10 mgs of mtx and sometimes less) you can read below my extensive treatment now.

This is a complicated disease and we on the forum call it a 'journey' to figure out what meds work best for us. Nothing works quickly enough, we think! Prednisone is the fastest, but you may want to read up on that one as it is only a temporary help until one of the others 'work'.

I'm glad you are getting a second opinion, most of us have gone through more than one doctor before we find the person we trust and like best, that doesn't mean we don't question the treatment (constantly). I hope you get relief from your pain, as you want to remain active, you are young and have a lot of energy which is a plus with this disease. Good luck on your journey. Please keep posting on the forum and let us know how you do with the second doctor. Lynda

A factor that no one has mentioned is that almost all RA drugs stop working
eventually (except for AP if managed correctly) so you don't want to exhaust
all the drug possibilities right away. MTX is one of the cheapest, and it's
been in use for such a long time a lot is known about it. Most people start
with that and don't move on to TNF inhibitors unless they really have to.

 The other thing may be that your RA isn't  too serious right now, and may not become so.

Humira, Enbrel and Remicade are prescribed for moderate to severe RA..

There are many people who are under control completely on MTX alone.

If you have side effects they will probably be the most severe the first few times you take MTX.  Take it when you can give yourself an evening and a day to feel a little rocky.

As for the folic acid, you can buy it OTC..  I do that and take 4 tablets on the day after I take my MTX.  I used to get pretty bad canker sores, but now it seldom happens. watch out for an oral fungus too. your tongue will get very coated, and you will need  to take an anti fungal for a few days.

I've been on MTX 3 years and it is essential for me to make the Remicade effective. You'll see me post often about my decision to absolutely not drink alcohol and not take HDL lowering meds to  allow my liver to focus all its energy on metabolizing the MTX.. but then I'm a real crank about some things.

Welcome to AI; You've come to the right place as you can see. Combined we have many years of experience.....and although you'll get many different opinions on medication options you'll always get really experienced advice here.

I agree with Gimp & Cathy. I've been on MTX for about 5 years now. I have little to no side effects and it's made a dramatic difference in my well being. I started out on less effective DMARDS and worked my way up to this. MTX wasn't given right away when I was first dx'ed or I would have been on it at that time. I have also been on Humira after two years on MTX. You kind of need to exhast all of your DMARDS before moving up to the biologics. RA is a progressive illness and over time certain medications will no longer work for you. You don't want to start with "The Big Guns" because those too will over time stop working and where will you go from there? No; start low and work your way up. You want to use the weakest option and see if it works before moving up.Don't think that if you start with the stronger medications you will be cured and never have to worry about it because it just doesn't work that way. You still have many years ahead of you to deal with this illness. Pace yourself.

The second opinion is a good idea. Your relationship with your RD is going to be a long term relationship. It's important you find someone you like and someone you feel like respects your opinion and won't just rush you through and throw meds at you without explaining what's going on. It sounds as if you and your first RD might have a difference of personalities. See the second one and then decided which one better suits you in the long term. It's really important to have a doctor you like.

Good Luck! RA treated early is very managable. Don't put off treatment too long.

Again; Welcome.

I agree that you should get a second opinion, if only for your own piece of mind.  A good doctor isn't offended by it, often encourages it.  Just so you know, I was recently diagnosed, it's only been a few months and only since Feb that I had any symptoms that I noticed.  I said no to MTX when the first RD tried to put me on it.  In fact, I high tailed it out of his office and never looked back.  When my current RD (whom I like alot) put me on it, I had finally resigned myself to the fact that I needed something, what I had wasn't going away, at least not any time soon.  The MTX helped some, but when he added the enbrel, that's when life got good again.  All the best to you.  And try not to be too discouraged, RA is doable Welcome to the board.

Everyone here has had great things to say so I will just add my experience with mtx.  I do injectable and that bypasses the stomach upset you can get with the pills.  I am also on a humira (a biologic) and don't know what I would do without either one of the meds. 

I am not pushing for you to go on anything.  This is just my experience. AP therapy may just be the treatment option that you want to look at.  Pip is a wealth of information on it and just a doll and would answer any questions you have about it. 

A second opinion is a good thing to get.  It is your health and you are in charge of it. 

THANKS SO MUCH to all of you who responded! Everything you all said
has helped me understand this drug thing better.

One more question, though...if I want to try the AP therapy, do you find
that most doctors are open to prescribing antibiotics or will I have to find
one that will. And it generally is done along with MTX, right?


Thanks a bunch!!!I've had three different RD's since the onset and never once has it been mentioned. I've only heard of it here. I'd say it's not commonly used but I don't know for sure. From what I understand some doctors are open minded about it and some aren't. If it's something you interested in I'm sure through research you can find a doctor in your area that supports it. AP therapy is an old but controversial therapy which is not accepted by many doctors, however, there are thousands of people who have been successfully treated with this therapy. There is much politics and ingrained, institutionalised rejection of this therapy despite the many clinical studies done proving its effectiveness.

AP therapy was developed by a now deceased doctor, Dr Thomas Mcpherson Brown, who believed that RA was caused by an infection of tiny cell wall deficient organisms called mycoplasma. Dr. Brown was far from a quack: "After the war Brown headed up arthritis research for the Veterans' Administration, and eventually became Dean of Medicine at George Washington University Medical School and a medical consultant to the White House. By the time I met him 1988, he had retired from GWU but still maintained a thriving clinical practice and directed the Arthritis Institute at the National Hospital just outside Washington." During his lifetime Dr. Brown successfully treated about 10,000 arthritis sufferers with his antibiotic protocol therapy.

Before his death he wrote a book with Henry Scammell called The Road Back, which is where the Road Back Foundation gets their name. Later, after more advances had been made with the treatment, Scammell wrote another book The New Arthritis Breakthrough, (check out the reviews!) which has The Road Back in it. If you're considering AP you really should read it. It fully explains the theory and the treatment, is interspersed with personal anecdotal stories, and is an easy and informative read. You can probably borrow it from your local library, but if you do the therapy you might want your own copy.

Depending on what you believe, you can or can not take mtx and conventional therapies with AP. The mechanism of why the drugs work is still an unanswered question and open for debate. It is possible that the medication is doing different things at different doses. Some people believe that when taken daily it works as an immunsuppressant and antiinflammatory, while when taken as a pulse dose it stops the mycoplasmas from reprodcuing and lures them out of the tissues (where they live) so your immune system can attack them. Some AP doctors think it's no problem to take conventional meds while on AP, others think immunesuppressants get in the way of the therapy. I am currently on mtx, plaquenil, and minocin (minocin, or minocycline, is the most commonly used medication in AP). My plan is to slowly phase out the mtx now that I have slowly phased in the AP. I'm doing it this way to avoid herxing, something you will become very familiar with if you decide to do AP. You can also just stop mtx and start AP, or never take any traditional drugs at all.

One problem with AP is that it's a very slow therapy and it can take years to work (although it usually works a lot faster). As a recent onset arthritic, you should be concerned with beating the disease back as agressively as possible. If I knew what I knew now when I first started showing symptoms, I would take 100mg of Minocin twice every day for 18 months along with some really good probiotics, to possibly eradicate the disease from my body completely. (However, now that my RA is established I am on a pulse dose of 150mg MWF). It's important to get any inflamation under control for the therapy to work and that is why many people us prednisone, NSAIDS, mtx, enbrel, or other conventional medications while they're waiting for the AP to kick in.

It IS possible to take traditional RA meds while you're also doing AP, it turns out. I have talked to several people who have approached the protocol the way I am and have now phased out traditional meds and are doing fine on AP alone.


I am not a doctor and have no medical training, so all I'm saying should be taken with a grain of salt. Unless you can find a doctor who believes in and prescribes AP, your best bet is to get as much knowledge as you can about this treatment (if you're interested in trying it) and find a doctor who is willing to monitor your progress while on it. A good place to start is to read The New Arthritis Breakthrough and visit www.roadback.org. If you post on the message board there someone will send you a list of AP doctors in your area.

Most conventional doctors will not say AP therapy doesn't work, however, they have no clinical experience with it and often discourage patients from trying it. Not all AP doctors are marginalised and some are quite renowned, such as Dr. Gabe Mirkin and Dr. David Trentham (Harvard Medical University).

Like any RA treatment, it doesn't work for everybody and everybody has a different experience with it (I have heard some anecdotal stories of people who tried it and sustained joint dmage while waiting for it to work). I don't know if it works for me yet as I was doing very well on mtx and plaquenil before I started the therapy so I won't know until I stop taking those drugs. However, I do know that it works for a great many people and that is why I still promote this therapy. I think that since most doctors do not offer this therapy as an option it's worth spending the extra effort to let people know it exists.

Good luck with whatever treatment course you follow, and I'd like to recap that getting early aggressive treatment is the best thing you can do for the most positive long term prognosis.
Thank you, Gimpy, for taking the time to explain AP in detail. 

My concern has been do I risk damage while waiting for AP to work or do I take the MTX right off the bat to try to preserve my joints.  I pretty much decided that I'll take the MTX but also see if one of my Drs. is willing to prescribe the Minocin.  I emailed the Roadback FL contact person on Thurs. to try to identify local AP drs.  I've not gotten a response yet, though.

In the meantime, I'll read the book.

Thank you!!


Gimpy, can you do AP and traditional meds at the same time?

Linncn - The answer to your question is yes!  There are a lot of people on the Roadback board who start that way. 

We were told by our AP dr. to start mtx when our daughter started zithromax - he said antibiotics are slower to work, and we could not risk waiting that long (funny thing, the ped rheum made us wait six more weeks anyway!).  We had to stop mtx because she had too many infections, and with the last set of xrays we feel comfortable staying on zith alone for now.  Plus, her latest blood labs show her sedrate is normal and her CRP has dropped from 11.6 to 1.2 since starting zith!

[QUOTE=jbnole97]Thank you, Gimpy, for taking the time to explain AP in detail. 

My concern has been do I risk damage while waiting for AP to work or do I take the MTX right off the bat to try to preserve my joints.  I pretty much decided that I'll take the MTX but also see if one of my Drs. is willing to prescribe the Minocin.  I emailed the Roadback FL contact person on Thurs. to try to identify local AP drs.  I've not gotten a response yet, though.

In the meantime, I'll read the book.

Thank you!!


[/QUOTE]

 

Gogo: You should be a writer. That was very thorough and well-written. Thank you for taking the time to post that so jb and others might learn from it.

jb: I was scared of joint damage while I waited for AP to work, too. I bit the bullet and tried AP, anyway. I'm so glad I did. I have no joint damage. You will find the majority of AP patients respond within 8-12 months. Young people, men, and recently diagnosed, tend to respond more quickly, in 3-6 months, in many cases. You are recently diagnosed, so you have that to your advantage. I was a very quick responder. Within 3 months I was 50% better. Within 6 months I was almost 100% back to normal. I reasoned that I would rather risk damaging a joint than immunosuppressant side effects. But everyone has to make that decision on his/her own. Many people do start with another DMARD, such as Plaquenil or MTX, and wean off of them when the AP kicks in. However, AP may take longer if you are on an immunosuppressant. Personally, if I had to add another DMARD I would choose Plaquenil.

 

If you post on the RB board, a volunteer might respond with a list of doctors more quickly than waiting for your local representative. Be sure to include your e-mail.

 

Take care and best wishes. ~Karin

Gimpy...Thanks for the info.  I've read a couple of articles about AP, but I can't say I've really researched it.  What I did read, and seeing what you have to say makes it seem definitly worthwhile to look in to.  I see my RD on Tuesday, maybe I'll ask him what he thinks.

Linda


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