Pills For Every Ill

MS is different for everyone.

“Medicine is a science of uncertainty and an art of probability.” ~ William Osler

For the past few weeks, I have been feeling run down. I even had moments when my left hand stopped working. It just didn’t respond to anything I wanted it to do. I thought the problem would pass but it never did. So I finally made an appointment with my neurologist. I told him about the difficulty I was having with my fine motor skills and how I was more tired than usual. He gave me a routine examination. Then he prescribed the standard MS go-to treatment of steroids.

Being a veteran at receiving Solu-Medrol, I opted for the in-home 5 day IV infusion. That way I could stay in the comforts of my living room instead of traveling to a clinic or hospital.

When the nurse arrived at my home, he had a pile of papers for me to sign. The last thing he needed to know, before starting the treatment, was all of the medications I was taking. As I read from my drug list I keep on my phone, I noticed he ran out of room on the form he was using to document my answers. Then he said, “That’s never happened before. I’ve never run out of room”.

So I asked him, “Do you think I take a large amount of medicine?

He very diplomatically said, “If that’s what you need then it’s not a lot.”

That encounter got me thinking. Do I take a lot of prescription drugs? I know I ingest a whole heap of pills. But is it more than others with MS? Or am I in harmony with the norm? It just seems I take a pill for every ill.

Below is my list of medications that help me manage my MS and it’s symptoms.

Rituxan® – MS Treatment
Clonazepam® – 2mg
Mybetriq® – 50mg
Baclofen® – 20mg
Nudexta® – 20mg
Alendronate® – 70mg
Reglan® – 10mg
Effexor® – 75mg
Trazodone – 50 mg
Ultram®- 50mg
Ritalin®- 20mg
Cambigan® – Eye Drops
(This list excludes my vitamins)

So I want to know, do you come close to the amount of medicine I consume? Do you take more? Do you take less? Or do you think I should not compare myself to others because everyone’s MS is different?

Author: Nicole Lemelle

My name is Nicole Lemelle. I am a writer, activist and a person living with Multiple Sclerosis. I created My New Normals to educate those who do not understand MS, reassure people with similar plights and inspire everyone to seize command of their lives.

11 thoughts on “Pills For Every Ill”

  1. Hey Nicole. For what it’s worth, you take a lot more than me. I was diagnosed with 2ndryMS in April, 2012, quit working due to MS in 2014. But I also think comparing is not necessarily good. I tried copaxone for about a year, tecfidera for about 9 months, doc wanted me on tysabri but I was susceptible to JC virus. Now I take nothing. Other than major lifestyle changes which include fish oil, water, watching what I eat, exercise and of course ridding stress and negativity from my life. Among other things. I am combating this condition in many ways and always open to suggestions. On a scale of 1 – 10, 10 being good and 1 being bad, I am a 12, but I walk a little funny.

    JE

  2. ditto what everyone else says. “a lot” is subjective. you might take more or less than someone else, and i agree that talking to your medical team about this concern is a good idea, but if this cocktail is working for you, and you are aware of possible sides (especially with certain combinations), then what other people take is unimportant. your health profile is unique, and you are unique.

  3. I have probably said I am not a “pharma” girl before. When it comes to MS drugs…I just avoided them and managed around the disease for 20 years, working a full time job and a part time job as well for nine of those years. I learned staying away from heat and avoiding direct sunlight, getting plenty of sleep…and backing off when I had warning signs like heavy legs or stumbling. I also learned to avoid aerobic exercising because it raised my internal temp and I would pass out. Now I am in secondary progression for 12+ years and there really aren’t any approved meds for this stage f the disease…but many doctors still prescribe the drugs for RRMS because they have nothing else they can do…and patients are desperate to try anything. Recently, I did try a new approach. I had lost my ability to walk with a cane and was experiencing so much pain. I could no longer straighten my legs or put any weight on them. Resisting going to a neurologist but asking for a referral to a back surgeon finally got the focus on my lower back. To make a long story short, I was prescribed “lidocaine ointment” which I rubbed on my lower back. The pain was gone in a few days. It took about a month to straighten my legs but once I did, I started getting some strength back, and could use a walker. I started taking a step or two and finally progressed to being able to walk up and down a hallway in my home. I also asked my doctor for a prescription for “levodopa” after seeing a segment on the Today Show, showing a women who got out of a wheel chair taking the drug. It is normally prescribed for Parkinson’s…but I wondered if it would help me. He said “why not?” I have been taking it now for 3 months and I am now able to even take steps around the house without a cane. I could see the improvement in one day. So my list of meds include lidocaine, levodopa, powdered aspirin, and a low dose statin pill.

  4. Hello Nicole,
    I’m not going to judge or be discerning about your medication yet I think less is more. We suffer from a painful crazy disease, and we know that’s true so I say screw the meds! I take Avonex, (add meds) and some muscle relaxors since I had a broken back and that’s it. Again, not judging, just keeping it real! Thank you for your friendship and your work!

    Your friend,
    Tim
    #MSRunnerDude

  5. I take fewer but much to consider with that. I quit taking a couple because the side effects were causing more problems than they were helping with. The 6 I take routinely and the mega dose of Vitamin D I take weekly are a good balance for me right now. I have been in a good state for about 6 months but as you know at any point that could change. I think as patients it is important to make sure we not only speak with our doctors and pharmacists but also self evaluate. As long as they make you feel better then I wouldn’t worry about it.
    Fee better
    ~Kim from Ohio

  6. Dearest Nicole,
    Your list of meds is longer than mine, but what would be the use of comparing? My list is longer than several in my support group, and shorter than others. The most important thing for me is doing what keeps me focused on improving my health. Meeting with a functional medicine practice along with P/T, psychiatrist and a neurologist – as well as keeping my GP updated, has made me feel much better about my role as an empowered patient!
    Good luck to you my online friend – you are a tremendous example for all of us!

  7. Talk to your doctor. Tell her what you feel. It may or may not be possible to eliminate or change any of your medications. Many medications have fatigue or depression as side effects. Like you, I am no longer very mobile and use a wheelchair. I take baclofen 20 mg, trazadone, cymbalta, and recently added myrbetriq. I have tylenol3 and Nucynta for pain, but try not to use it. I also have prescription patches (menthol and capsaicin) that really help a lot. I have times when nothing seems to work too. It usually gets better but I see a definite progression in the disease. Hope you are feeling better soon!

  8. Dearest Nicole….first I think you should never compare yourself to others but of course we all do at times. We compare ourselves when we doubt ourselves or our current state of being. As you know sweet friend MS is so different in each of us but we are all connected by sharing a MS diagnosis. After having MS for 23 years I am on the least amount of medication. I take : Nuvigil for fatigue and Effexor for depression and neuropathy. I also feel better and have the least amount of symptoms for some miraculous reason. When I was on monthly solumedrol and injecting Avonex and taking a million other medications for bladder, spasticity, energy, depression, neuropathy, sleep, appetite, anxiety, burning and tingling I felt worse. I am NOT saying that less medication is better but for me and for my MS less has been the ticket.
    I have been on every injectible and there were times I was on so much medication I felt like my head was in a fishbowl. I stopped the madness after a neurologist prescribed Rebif for me and never said a word about the suicidal like depression that can be a side effect. Seeing that most of us who have MS have depression as well Rebif comes with a Bold warning for doctors to monitor patients with depression while on Rebif. She never said a word about these warnings and when I contacted her about my depression worsening she just said to stay on Rebif. I had to my own research and when I read about people who had committed suicide while on Rebif I stopped iit immediately. I also stopped the medicine for every other symptom and began a healing journey of my own that put me in the drivers seat. I AM NOT saying that medication doesn’t work or isn’t necessary because it does and it is. For me….less medicine has worked wonders for my mental and physical being. Today I pursue my faith and very simple things like getting outside and taking long walks with my dogs….engaging in exercise and yoga with others….getting between 9-10 hours of sleep a night…..following Dr Meyers diet for immune disorders…..going to my weekly therapy appointments and having joy and peace in my life. This is MY LIFE and what is working for MY MS. Everyone is different and the regimen I follow works for me. I won’t say never but I would have to progress in my disease before I followed the typical MS regimen of drugs and disease modifying agents.
    I love you dear Nicole and you are brave and courageous in your journey.

  9. Have to admit that I have never taken that many pills. I was always taking far more vitamins than pills. I’m meant to be on Gabapentin and Tizanodine for my MS symptoms but after a few years, they stopped having any benefit. I now get better results from the homeopathic that I use.

  10. Nicole, I dont think you take alot.. my list is about 3 shorter, but that may be because i just dont want to take anything else. meds to slow ms/ pain meds/ spasticity/ nerve pain/ meds because i cant sleep/ meds for vertigo/ otc meds for pain/ headahe/ itching / heartburn …. for every complaint made to the dr there is a med they can give us.. if we will take it. maybe thats why so many take the holistic approach. Quite frankly if it were up to big pharma, the list will never be long enough…..

  11. I used to take 27 pills every day not including my vitamins, but I think it is much lower now. I am also off of my DMD for the time being. I also have PCOD, Asthma, GERD, and IBS. What fun! I currently take:

    Prevacid (for GERD)
    Topomax (for Migraines)
    Flexeril (for Spasticity)
    Provigil (for MS related fatigue)
    Zoloft (Depression/Anxiety)
    Singulair (Asthma)
    Allegra D (Allergies)
    Ditropan (MS related bladder issues)
    Spironolactone (POCD & Idiopathic edema)
    Albuteral (Asthma Inhaler)
    Imitrex – if needed for migraines (abortive therapy)

    This doesn’t include my vitamins. I think that’s everything.

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