Rheumatoid Arthritis Support Group

Ms. Rigor, I understand that you feel guilty about this article, but, please don't. I read the article to the very end and what it is about is basically a legal feud between the pharmaceutical company that developed and marketed the drug and the insurance companies who paid for it. As always, the insurance companies want their money back and will do anything to get it.

No one claims (in court or out of it) that the drug was harmful to people in any way. So, you did not cause your patients any harm by recommending that they take this drug or actually giving it to them. The issue is whether it was helpful. If probably wasn't. But, then, so are the NSAID's that many RA patients are prescribed for years.

Indeed, the insurance companies insist that doctors should not provide patients AFTER diagnosis with RA with anything but NSAID's for at least three months (well, they did so for years, perhaps now they have changed their ways). I have read mountains of literature on how patients were allowed to develop irreversible joint damage while still on NSAID’s (not to mention the side effects that they were suffering) while doctors refused to provide them with Methotraxate. This, of course, was happening while Methotraxate was available and was (still is) very cheap. It was happening for decades, leading to thousands, possibly millions of people becoming disabled because of RA.

I consider this a much bigger crime than what the pharmaceutical company in the above article did.

Basically, you were administering placebos and we know from research that placebos do work. They work because the paitents believe that they do. The company that lied about the effectiveness of the drug is to blame for lying but YOU have nothing to blame yourself for.

Just shows you again how careful we need to be about advice, drugs, interventions or even tests that are recommended to us by our doctors.

Thank you D...while I'm trying not to hold myself personally responsible, "we" as a medical profession must do what we can not to harm or fleece our patients. In my mind if a drug is not helpful, that IS harming the patient. Neurontin is an exrememly expensive drug which has many side effects, a few which are severe and life-threatening. People can have allergic reactions to any drug which can kill them. People may have foregone other treatments believing this drug was the answer for them. This cost of this med was extremely burdensome to a great number of patients who didn't have anything to spare.

Of course I realize we live in modern times and money talks. However the patients going through our medical system are vulnerable and need protecting. They are ill, afraid, and most are unstudied in medical reasearch. To take advantage these people who need our help is unthinkable----the drug companies, the marketers, and those of us who were blind to such schemes are not blameless.

Not that I intend to trow myself in jail or anything.... ;)

Ms. Rigor,

Perhaps the most important lesson for me from the article that you shared with us is that it tells us that the pharmaceutical companies will do anything to get existing drugs to be used for diseases OTHER the ones that they were developed for in the first place.

In this case, the uproar is about the use of this drug for diseases OTHER than what it was originally intended for (and presumably, is effective for). It was only when this drug was applied to OTHER diseases that its effectiveness was questionable. It was at this point that the pharmaceutical company lied to keep the money coming in even though there was little evidence to support the effectiveness of the drug for all these additional diseases.

The reason that this bothers me is because the exact same situation applies to RA. The history of treatments for RA (up until recently) is for drugs that were used for OTHER diseases (Leukemia, Malaria, etc. ) to be applied to RA.

I know, they work, but the trouble is that while the pharmaceutical companies are pushing them and making a fortune of them (e.g. Methotraxate), they have no real INCENTIVE to develop a real cure for RA. Why bother to invest in developing a drug that actually cures this disease if you can continue to make billions of dollars from the millions of sufferers out there who are taking the disease modifiers and are not benefiting from them that much?

That's what bothers me!

Well guys I am and have been on neuronton for over a year now and have had NO side effects and have experienced SIGNIFICANT relief for the painful nerve endings in my feet for which it was prescribed. Also, I need to make it public knowledge that I take the generic of neuronton, called gabiprentin and it costs me only a $10 co pay per month for 120 pills. ( 4 pills per day) I also want to acknowledge that very often drugs used for one disease end up indirectly working for other unrelated illnesses and are found out by accident. Since both of you seem to tout medical expertise, you should both be aware of this fact. Look at MTX. It was originally used as chemotheraphy for cancer patients, but is tried and true in helping RA. Look at my usage of low dose antibotics, which have been found to be effective on symptoms of RA,minocin is not a medication that was expected to help RA. Prednisone too, is a drug that is used across the board to help with so many auto immune diseases as well as ashtma and bronchitus. I am no fan of the drug companies, and this is certainly not an endorsement of them, but clearly each disease and each symptom treated by a drug that was initially meant to help with something else should be looked at on a per patient basis. Ms I don't know why you feel guilty about handing out neuronton, it isn't like it is you that prescribed this drug to the patients recieving it. BTW for those that don't know, neuronton is an epilepsy drug that works on nerve endings. It does much the same thing that the more expensive and new drug lyrica does for fibromalga. It has helped me a lot! So don't jump to conclusions by an article even one put out by the New York times. You can't believe everything you read!

I am most pleased that neurontin has worked well for you Marcia, and that you have not suffered any side effects. I can assure you though that there ARE people out there who've had negative reactions to this drug.

I'm outraged because a drug company purposely hid relevent research from the public---research that would have made a difference on whether or not this drug would have been prescribed for certain conditions. Doesn't anyone else think that's unethical? I don't think you have to "tout medical expertise" to be concerned about drug companies manipulating scientific research!

Hey, Ms. Rigor, just for the record, I do believe that what the drug company in your article did is unethical. Lying to make a buck (which is what they did) is definitely unethical. I totally understand where you are coming come from, Ms. Rigor.

As for your experience, Marcia, I am delighted that you are finding this medicine helpful. That’s very good news and, I am sure it makes Ms. Rigor feel a bit better, given that she administered this medicine.

And, yes, I understand that sometimes Pharmaceutical companies are able to "re-cycle" a medicine that was developed for one disease to help sufferers of another disease (I mentioned two such cases that feature prominently in the treatment of RA, namely, medicines for Leukemia and Malaria).

It just bothers me that, particularly when it comes to RA, the "re-cycling" of medicines results in a disincentive for the pharmaceutical industry to develop real cures. Thus, as long as they can re-cycle a drug that they already have to "treat" many other diseases (in this case, "treat" but not cure RA), they don't have a reason to develop drugs that target specific diseases, namely, a real cure for RA.

Pharmacutical companies do not "like to re-cycle drugs", especially when they become generics. I would like to cite a story about the injectable form of MTX that I take as an example. I take one MTX shot weekly of 10mg. The medication comes in small 2mm vials. I recieve 4 vials from the pharmacy each month. My RD insists that my liquid MTX has no perservatives. So I fill my syringe weekly and I toss the remainder of the medication in the bottle. Ironically, the injectable form of MTX is not covered by my insurance company which is BC/BS, only the liquid with persevatives is covered.The medication costs me $32 and change each month, which I feel is relatively inexpensive as far as medications go. A few years back Walgreens couldn't get the MTX, nor could any other local pharmacy. My RD told me they too were having difficulty getting it for patients that came into the office. I immediately launched my own investigation and found out 3 companies were responsible for the entire supply of this drug.I got names and phone numbers for all 3 suppliers. 2 of the 3 companies had stopped producing the drug because it was so inexpensive it was not profitable. The 3rd company was remodeling the factory and wouldn't be up and running for a month. I panicked and called my RD to give me a bunch of RX's and I called every pharmarcy in Illinois and stock piled what I could. Thank goodness it got me through until the one company was back up and running. So often by the time a drug is re cycled as you say its patent is gone and a generic can be made and solicted. Because of insurance costs most people opt for a generic unless there isn't one. I do understand that pharmacutial companies bribe the medical field with gifts and free samples in turn for writing scripts. This is another whole topic of conversation. The combo of RA drugs that works for me, may not work for you. In that same vain when you have a patient suffering, it is often worth the try to see if unorthodox medications or methods work. I believe it is the obligation of every patient to recieve a plausable explanation from their doctor as to why you need to take any drug. My doctor may have an MD, but that shouldn't intimidate me to arbitrarily act as a leaming and do what he/she wants. Ms. as a medical professional it is your duty to administer what a doctor prescribes. All drugs carry warnings. All drugs can cause an allergic reactions. All drugs can cause side effects, it just depends the individual that is taking them.

Sorry to reply slightly off topic, but being new to RA and learning how insurance companies and profit are taking charge of my joints, I am really getting boiled - which is really bad for the condition. Why couldn't my GP, or the ortho guy have said to me a year ago, "since your pain is in BOTH shoulders now, and it is spreading to other joints, and is symmetrical, let's do blood work to rule out your rheumatoid factor?". A YEAR ago!

Now they only think I've had it since the diagnosis, which was really only 2-3 weeks back. I wanna scream!!!!!!!!!!!!!!!!!!!!!! (sorry) It's just now I am certain I have permanent damage from waiting around for all the BS (I guess that could be a pun).

As far as neurontin goes, my best friend took it and said it did nothing. I was so happy to read it helps bizemomm though!