Marie’s Story – Why I Don’t Take MS Drugs

I have mentally composed several opening statements for this post, but just couldn’t seem to put my fingers to the keys. Here is why: I want to be honest about my experience with prescription drugs, but I want to make sure I do not advise anyone else about meds for Multiple Sclerosis.

Let me say at the start that I am not a qualified medical professional. I am not an expert on diagnosis or prescription medications. This post is written strictly from my personal experience, and the information applies only to my personal choices.

In the 1980’s after I was diagnosed there were three occasions when I was put on an extended courses of Prednisone. The drug was taken in doses that gradually increased, then stayed at a peak for several days before gradually decreasing to a stop. I personally could see no difference in my MS symptoms while taking the Prednisone. However, the side-effects of the drug were HATEFUL! I could not sleep, so was prescribed Halcion. I was agitated and anxious all the time. I gained weight (though the weight fell off when the drug course ended).

By the time I was put on Prednisone for the third course, I felt like I didn’t have control over my own thoughts. I wanted to jump out of my own skin. I felt angry and aggressive. I can remember my husband making some innocuous comment to me, and I charged at him, shoving his chest and pushing him backwards. All the time, I was thinking “Why am I doing this? This is not me! I can’t make myself stop!”

I vowed I would never take Prednisone again, and kept that vow for thirty years – until recently.  I had a two-month battle with  rampant Candida rashes that covered much of my body and caused my face to swell, burn, and peel.  I had to take Prednisone for three weeks.  I hate it now as much as I did thirty years ago.

I don’t recall the year, but I keenly recall an incident fairly early in my MS history that solidified my choice to avoid the MS drugs. A bout of what I thought was “flu” left me so weakened that I could not walk. I was hospitalized for a couple of days and given IV fluids for recovery. My primary care doctor referred me to a neurologist for follow-up.

I sat in a wheelchair in the neurologist’s office while she did the usual neuro tests and quizzed me on my MS history. I had to concentrate intensely to answer her questions. MS can cause what some call “brain fog”. When I have brain fog, it’s like flailing through cobwebs to make the brain focus. I heard the neurologist tell me that I HAD to begin taking Avonex, a relatively new MS drug at the time.

Something in me resisted being told I HAD to take a drug. I responded that I wanted to read about the clinical studies and side effects before taking Avonex. I vividly remember the doctor pulling herself stiffly upright in her chair, looking me straight in the eyes, and saying with great offense, “I am not a fly-by-night physician! I know what you need!” With all the pitiful strength I had, I pointed to my chest and said, “Yes, but this is MY body. I will choose after I have the facts.” I had dealt with enough doctors by that time that I was no longer intimidated by them. I needed a doctor who would work WITH me, not give ORDERS to me.

She huffily called in her nurse and instructed her to show me the information about Avonex. I sat in a chilly closet-sized room and struggled through the brain fog to read the clinical information. It was alarming to me. The side-effects of the drug scared me far worse than my MS symptoms. I opted OUT of taking Avonex.

I have since opted out of taking other MS drugs that came on the market. I decided instead to manage my symptoms. It was a risky choice to make, but has proven to be the right choice for me.

Since then there have been many drugs developed specifically for Multiple Sclerosis. I am on the mailing list for several MS organizations, so I have stayed updated over the years.Hundreds of studies have been conducted. Billions of dollars have been spent on research and formulation of these drugs. Drug companies have invested billions of advertising dollars in glossy ads.  Here are a few of the current drugs on the market.  Recently there have been newer drugs developed.

ms-drugs

I take NONE of the standard MS drugs.  

About two years ago, I began taking Low-Dose Naltrexone, a drug that is considered “alternative” in the MS community.  I did a lot of research about LDN before approaching my primary care doctor for a prescription.  She referred me to a neurologist, who initially did not want to prescribe LDN.  However, after reading the online information I provided for her, she relented and reluctantly prescribed the drug.  Low-Dose Naltrexone must be ordered from a  compounding pharmacy.  I have had good results with LDN, especially because it relieves much of the burning neuropathic pain in my legs and feet.  Information can be found here: http://www.lowdosenaltrexone.org/

I don’t know how it began, but I have developed many allergies and sensitivities to prescription drugs. It seems that once the sensitivities began, more followed. To date, I am allergic to Demerol, IV contrast dye used in CT scans, Clinoril, Dilaudid, Penicillin, Percocet, Tizanidine, Baccitracin, and Diflucan.  I am hyper-sensitive to Epinephrine and Codeine. All the statin drugs cause severe joint and muscle aches, including Zocor, Crestor, Lipitor, Zetia, Niaspan.

You can see why I don’t want to take more prescriptions. I have found several supplements and alternative treatments that help me cope with MS.

(In the next post, I will blog about Marie’s Story: How I Manage My MS Symptoms.)

For excellent information about Multiple Sclerosis and a chart about drugs used to treat MS, visit these web links:

http://www.mult-sclerosis.org/mstreatments.html
http://mymsaa.org/manage-your-ms/search/

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