Last summer my regular doctor put me on Plaquenil while I waited months for an appointment with a rheumatologist. The rheumatologist put me on Methotrexate in addition to the Plaquenil. Today I increase my Meth. dosage by two pills to bring the total to 8 pills per week.

This is week 5 of the Meth.for me. So far I have not had any side effects. I take it once a week at night before bed. I also take 1000mg of folic acid per day.

I have a standing order at the lab for blood tests every month. I have now had them twice. So far, so good. If they continue to be good, I will probably get them every 3 months at some point.

If you can tolerate the Meth. and if it does you good, it if far less expensive than biologics. Methotrexate was synthesized in the 1940s. It was the first chemotherapy drug. It was used successfully to treat childhood leukemia. It is still used today.

The the dosing for rheumatoid disease is FAR less than chemotherapy doses. The list of side effects is the same for cancer and RA patients, as though the dose doesn't matter. It does matter.

Many insurance companies will not approve (pay for) biologics until you take Meth. and find that it doesn't work or can't be tolerated.

One thing I like about the Meth. is that has been around a long time and there is a lot known about it and how it interacts with other drugs.

Good luck.

Nancy

Read the following thread from last month.

http://www.dailystrength.org/c/Rheumatoid_Arthritis/forum/17692743-roll-call-methotrexate

Over 50 answers. You'll see that most of us are on methotrexate. MTX is pretty much the first-line medication for RA and all its nasty little cousins. Most insurance plans won't approve biologics (Enbrel, Humira, etc.) without a trial of MTX, and believe me, you don't want to pay for these out of pocket. Do you prefer thinning hair to a wheelchair? If you keep up with your lab tests, don't drink alcohol (talk with your doctor about allowable amount), don't have a latent hepatitis infection, your liver should be OK.

As far as inflammatroy arthritis vs. rheumatoid arthritis, RA is one of several forms of inflammatroy arthritis. It has nothing to do with trying to make any more money. It basically protects YOU from getting a label that may not be correct. (I started off with an inflammatory arthritis diagnosis. Turs out, mine is psoriatic arthritis. Similar, but NOT the same.)

The treatments do sound scary, but spend some time reading about the effects of untreated disease.

So if your bloodwork isn't positive for the key lab diagnostic indicators RA: ccp antibody or RA factor, you fall into a grey area for diagnosis. Joint pain and swelling can be caused by several different conditions. The term "inflammatory polyarthropathy means 'inflammation of more than one joint', and can be caused by several different conditions, such as rheumatoid arthritis or psoriatic arthritis, or sjogren's, or lupus etc. It is a more generic diagnosis to give to a patient before settling on the more specific diagnosis. The doctor is considering you for a 'seronegative rheumatoid arthritis' diagnosis.

Oftentimes docs will take their time to give the specific diagnosis until they have acquired more data so that they are more confident that you for sure have it, but in the meantime will operate like you do at the beginning, because one way to determine if you have a specific diagnosis is to use the medications for that condition to see if you improve. After some time of treating you, when they are even more sure about the diagnosis they will then give it to you.

Even if they are initially 75% sure you have something, they don't want to give you a diagnosis to then suddenly find it is something else. This is a very common way to operate and it is not about insurance money. In fact, I know some doctors who would delay giving a diagnosis because insurances will penalize the patient themselves, (more back when the era of preexisting conditions was causing havoc for some people.). Again, the doc is pretty sure you have RA but doesn't want to give it his official diagnosis until he has a higher level of certainty after some time/treatment has been done. This is not about the doctor getting more money.

The reason why they call it the 'art of medicine' is because there is so much grey area surrounding the human body and what is going on with it. Two people with the exact same symptoms can have two entirely different diagnosis. Some cases which are 'textbook' for a certain diagnosis end up being something else.

Methotrexate is actually one of the first line treatments for RA. It has been used for decades in a low dose format. Methotrexate is also used as a cancer drug, which is where it gets a lot of its 'scary factor' from. I know its easier said than done, but just understand that many drugs are used for multiple reasons, such as Benadryl is used as both a sleep aid and for allergic reactions.

With methotrexate the labs are done often at the beginning because you start off on a low dose and raise it as long as the liver looks good, but then as the data shows your body is tolerating it well, then you do lab tests less and less, generally ending with every 3-4 month lab tests. If methotrexate is bothering the liver, the lab numbers will show it right away, and what happens is the doc will reduce your dose and your numbers will normalize. If you were to be on daily ibuprofen then the doctor would be having you do every 6 month labs to check for liver issues too. Elevated liver test numbers show up before symptoms do, and does not mean you are suffering permanent damage to your liver. It is a fairly safe way to ensure that you are getting maximum benefit from the drug without too many of the negatives. All drugs have some negative aspects to them, unfortunately, but there is a reason why methotrexate is so heavily prescribed - it has a wide body of data on how well it works to reduce RA activity, including less inflammation, less stiffness, and more healthy joint years.

Regarding the other side effects, if you do have thinning of hair (it won't be falling out in large clumps, nor will you go bald), then what the doctor will do is to increase your dosage of folic acid (one of the B vitamins) and to add biotin (another B vitamin). Mouth sores is another possible side effect, which has the same treatment of increasing folic acid vitamin. The other common side effect is nausea which generally gets better as the body gets more used to the medicine. There are also some things you can do to reduce nausea, such as split the dose between breakfast and dinner on the same day.

Another reason for starting you on methotrexate before doing Humira is that insurance companies usually require you to be on at least two DMARD type drugs (plaquenil being one), and sometimes specifically require that you try methotrexate, before they will begin to consider covering an injection drug like Humira (the cost of this drug before insurance is $3,000/month). As well, you need to have an official diagnosis of RA or psoriatic arthritis before they will cover it. In addition, most people who are on Humira are also on methotrexate, as Humira works better when you are also on methotrexate.

With RA, many patients are on multiple drugs to treat it, not just one, so don't be too alarmed that drugs are added instead of replaced. This is becoming a more common approach for other conditions too, such as for high blood pressure, you'll often find patients on 2 different types of drugs, instead of a higher dose of one type of drug. That's because drugs for a condition all work in slightly different ways to get to the same result of improving the condition, so having two or more different types of drugs may work better than a higher dose of one drug.

This is a TON of information, I know, so please let us know if you have more questions. But I truly believe your doc isn't out for money or anything negative, but is operating in a way many docs do for the reasons listed above.

This article really relates well to your current situation http://www.cmaj.ca/content/162/13/1833.full

I'm starting Methotrexate after the New Year. I'm also on Placqenil and not seeing any real relief. I think the side effects of the Biologicals scare me a lot more. My sister has been on Methotrexate for many years and has been fine. Like the others say the dosage is far less than for cancer patients.

Eva

I have tried mtx 2x and the fatigue and brain fog were intolerable for me. I'm now on arava and Plaquenil. ALL drugs for RA are not pleasant and have nasty side effects.

But MANY ppl take mtx successfully.

It took me a number of years to get up the nerve to really agree to go on them.... plus the pain was becoming awful.

The disease going untreated is more fearful to me than the side effects. I have 2 friends that have gone without the drugs. One has gone fifteen years.... he cannot even comb his hair, button his pants, or take a bath.... he wld be in a nursing home without his wife. He did homeopathic for years. Now he is crippled.

My neighbor has had RA for ten years. She is in a wheelchair.... I've had RA for four years. She refuses the drugs...

This disease is nasty untreated.... and once you're crippled there is no going back.
It took seeing my friends get out in wheelchairs to convince me.... being afraid of the side effects is fear off the wrong thing

My best friend from Jr high has had RA for 15 years. She's on mtx, Plaquenil, and humira. She still works full time.

I freaked out when the doctor said chemotherapy.... but i couldn't take it. But other things have been more successful.

Good luck to you my dear. It is scary at first, but you have come to a very understanding place.

I have been on MTX since Feb. I too was very hesitant, I did research on-line and read every possible side-effect. I was diagnosed last Oct and didn't start mtx until Feb; I have one permanently damaged-crooked finger for all of my effort to resist. What straightened me out was talking to a gal who has has RA for over 30 years; she gave me a "come to Jesus" talk and told me not to be ridicules, so I broke down and started them. What she and my rheumy pointed out was the progressive nature of the disease and how mtx was the only thing on the market that really put a halt to the progression. I still am only taking 6 pills along with folic acid and I did end up getting Leucovorin; I was one of the thinning hair people-I can't afford to lose it purposely-and the hair loss stopped. I wish you only the best in your journey, and keep an eye on your blood pressure, mine went up the minute RA hit and I now have to take meds to control it. Truly wish you well Secret. Trish

Thank you all for your advice! It is definitely helpful in deciding where I go from here. I still have other research to do but I am starting to feel much better about trying this new treatment.

A special thanks to Ayvah for your post. It was very detailed and very informative!

51percent... I understand what you're trying to say when you mention RA is like cancer but I have had cancer. I was diagnosed 3 weeks after my 28th birthday this year. I had to undergo major surgery to remove the cancer from my body. I am now on medication to balance hormones and keep things in check which ALSO has a high risk of causing breast cancer. However, since I have actually HAD cancer (very recently and at a very young age... It is a less than 5% chance for someone my age to have the cancer I had), I find it very difficult to see my pain via RA as serious as cancer. That perspective may change as I continue to heal from my cancer procedure both physically AND mentally. Having such a life changing year is making me wary of being on so many drugs and having so many problems. It has also made me more aware of the side effects of each medication that I'm on and I am now more cautious about what I decide to take.

Thank you all, again, for your advice! I am glad to know that I have a place I can get information and support without being judged!!!! :D

you don't say if health insurance is involved, if it is there is kind of a path you have to follow, start with this, then add this or change to this if a bad reaction etc etc, an insurance may or may not pay for a biologic until other things have been tried...plus the other thing might work just fine for you..you won't know until you try them. I am sort of in the same place with my diagnosis and it is really frustrating but I am working on it...don't want to go back to all that pain...so take a deep breath, it isn't any easy path but you will feel better with some time and appropriate treatment

mttazzie, I am thankful to have insurance, although, I'm not sure they are thankful to have me! LOL I turned 27 this year and have already had over $75,000 worth of procedures, surgeries & visits this year alone! That's not counting medication costs! :/

It has definitely been a roller coaster year and I thought things were going to get better, but it seems I'm still dealing with more medical issues.... One day at a time, I suppose. :)

I am newly diagnosed and am 5 weeks into my treatment. I am taking MTX 12.5 mg by injection once a week. I decided to start with injections for two reasons. First and most important to me is that taking it by injection actually helps with correct dosing since none of the medication is destroyed in the digestive process like it is when taken orally. Secondly, my research told me that most people do not have the horrendous nausea when taking it by injection.

My biggest side effect is the fatigue/flu like feeling for 1-2 days after the injection. This was improving until I needed to increase my dose last week. I will increase it again next week and at that point be at 15 mg per week. I figure the fatigue issues will improve a few weeks after the last increase. I have had my first post MTX liver labs and they were normal. I will have them checked at the end of the month again since I am increasing my dose.

We all have to make our own choices in life based on our values, histories, etc. I just know that I do not want to be crippled by a disease that I have a good chance of stopping or slowing with early treatment. The need for early treatment to prolong my healthy years is what pushed me over the fear of the medications. I was more afraid of starting a cascade of degenerative events that I could not stop if I waited.

Keep reading posts on this board. There is tons of valuable information from people who are living with this disease. Good luck to you! Lori

good luck in your research into your treament of your RA and in the complete healing and remission from your cancer treatment. you have certainly been through the mill. keep asking questions. It's the beginning time, time to collect the information you need. You have been probably so tired up with your cancer treatment that you have not been able to catch your breath. Pick up a RA book at the library and review all the DMARD (disease modyifying anti rheumatic drugs I think it means) and go over all the early protocols that will be offered to you and write your questions on your index cards for the rheumatologist.

welcome

Ros

You're very welcome! Best of luck going forward and let us know if any additional questions or concerns pop up along the way. :)

Been on MTX for about 3yrs. but do the injections to avoid any stomach problems that sometimes comes with the pills.
Without the MTX the flares are intolerable!
Best of luck with whatever you choose!