Wednesday, October 13, 2010

Doxycycline and MS

I know this is old news but something I have thought about for over three years now...

While this was hardly a major clinical trial as compared to the trials with FTY720, I have had my own personal experience with Doxycycline and MS that, at the time, I was told by my neurologist was just a fluke. This had been prior to the article which was written in December 07.

Being allergic to everything from Penicillin to Levaquin, there are very few antibiotics that I can take. I had begun having symptoms of a urinary tract infection and, not being able to get it under control, I visited my primary care physician. He prescribed Doxycycline at 100mg twice a day for 10 days.

I was not on any MS therapy at the time and was in the midst of a relapse involving my legs being numb, burning and weak.

A few days into the treatment for the urinary tract infection I could have sworn I noticed a marked improvement in my MS symptoms. It felt to me the same way it does after steroids. Like something had tamped out the fire in my nervous system.

Next time I saw my neuro I mentioned this to him and he chuckled and told me it had to be coincidental that my MS appeared to improve while on Doxycycline. So that was that. I blew it off, never to think of it again until next time I had a UTI and needed it.

During the first six months of my participation in the TRANSFORMS trial of Fingolimod I had many UTIs as well as URIs. As often as once a month for that first six months. Each time I was placed on Doxycycline to treat the infections. Although I was not relapsing at the time, just the act of taking those blue capsules brought back the memory of how it had once seemingly quieted an MS attack all those years before.

Now don't go taking my word for this because I will tell you up front that I am not a medical professional and do not profess to be. I'm merely an MS patient who has her own thoughts on things and sometimes wonders them aloud here in my small corner of the internet. Should you chance upon these words, please take them as musings of an untrained observer.

That being said.... I wonder... ("here she goes", you say)

I wonder if what they concluded in the small study of 15 patients with active RRMS that stated "doxycycline, and other antibiotics in the tetracycline family, may help combat MS and other inflammatory diseases by slowing down enzymes that attack certain cells of the nervous system." might actually be true?

The sad thing is that we may never know. Doxycyline has been around since its development in the 1960's and was first marketed under the name Vibramycin by Phizer, Inc. It's a cheap drug. A 30 day supply costs roughly $22.

Compare that to the nearly $4000 that Gilenya is going for on and you can see why there are no massive studies being done on the possibility of an old, relatively harmless antibiotic being used as a therapy for MS.

It's all about the almighty dollar, and investors, and breakthroughs that might lead to a well-padded bottom line, not necessarily to affordable treatment for all. Who cares about that? Let the government cover the cost for the uninsured poor folks who qualify and let the insurance companies pay for the rest. For those who fall between the cracks?

Well, unless we can traverse the land of patient assistance programs and beg for free meds, or meds at a reduced price, from the Almighty Drug Companies who bottle our future and hold out a greedy palm in exchange for Quality of Life, then we're basically screwed.

Too bad the world isn't a more compassion-driven place. Could you imagine a world where your possessions, accommodations, health and happiness were not solely based on the paper in your wallet? What if it were a compassion-based society. Where we did things for others because it was the right and moral thing to do. In return our needs were also met by other compassionate-driven people.

There would have been cures for cancer and MS and other horrible diseases long ago. Instead, we are a society driven by greed at the expense of others. There will never be a cure for cancer or MS or any other costly, debilitating disease or condition simply because the money is in the maintenance. Cure them and there's no more costly meds they have to have.

It's the same philosophy behind big tobacco. Hook your consumer and you have a customer for life. There's no way we are ever going to outlaw tobacco as the cancer causing carcinogen that it is. There's just too much money at stake. Too many greedy, unethical people driving the beast.

Big pharma has no reason to find cures. There's no money in a world rid of cancer or MS. And if you aren't happy about that they can help. They have a pill for that.

I'm not trying to take the wind out of the sails of the S.S. Gilenya by any means. This is a most wonderful pill that I am happy the world of MSers now has at their disposal. The only thing is, it's just a big tease for many of us. I am just appalled and ashamed of us as a human race that we have *evolved* to this. Charging outrageous fees for a medicine that has the potential to help so many. That's not evolution.

Don't argue that it was the biggest clinical trial in MS history and that there are so many costs to cover. Novartis will recoup those costs in the first year, I'm betting. Then after that, what is the excuse? That CEOs need bigger 3rd homes?

Or will the price drop? Ha!

 I remember being appalled at the cost of Copaxone back in 1999. $600 for a month's supply. Simply outrageous. I never imagined in my wildest dreams that the prices would skyrocket the way they have. When big pharma realized the gold mine they had in the *maintenance* meds, who was to put a foot down and stop them? The answer is NOBODY and that's why the pricing is out of control. They charge so much because THEY CAN.

There is no way the production of a powder in a gel cap costs as much as pre-filled refrigerate-at-all-times syringes costs.

Gilenya will be no harder to produce that Doxycycline, except that 100mg of the latter is a MUCH bigger capsule. I just hope I can continue to receive Gilenya which has been directly responsible for my good health these past three years and I don't have to resort to trying out my theory that Doxycycline might help me.

Do we really want to do something about the healthcare crisis in America? Start by getting the drug prices and costs of things like MRIs and CTs etc. under control. The crisis stems from greed. Meanwhile people suffer and die needlessly.


  1. Hey - from streetinsider .com
    Novartis said that they would provide the drug free to us residents with no prescription-drug insurance and those who have an income that is less than 500% of poverty level."

    So maybe no begging?

  2. That will be nice but still entail proving that Medicaid won't cover you first, I bet, so lots of paperwork and hoop jumping and stress every time you try to see if you meet the criteria. At least that's how it was with NORD when I got my Copaxone with their assistance.

  3. Just to let you know there have been some studies on minocycline (which is the same family as doxycycline) and MS. Just punch in multiple sclerosis minocycline into google and all kinds of stuff pops up. I know someone on Avonex whose doctor prescribes 100 mg. of minocycline as add on insurance. I take it every day for adult onset acne (thank you changing hormones!). I was worried about mixing it with Tysabri since you are not supposed to add anything else with it that messes with your immune system My doctor seemed to think it was okay But you are right that because the tetracycline antibiotics are so cheap there probably won't be many big scale studies.

    One other question I've always wanted to ask you--exactly what kinds of side effects did you get with fingolimod besides colds and UTIs? Thanks!


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