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Side Effects

I take multiple pills to combat my MS.

I have always felt that my MS medicine has really helped me. On the other hand, I have also been afraid of the side effects that come along with the benefits. Some MS medications have even been found to have deadly effects. My worry is that I am taking so many drugs that the negative damage will overshadow the positive returns. I have learned to live with most of the minimal secondary effects but recently my fear of a more resilient side effect came to fruition.

A short time ago, I was diagnosed with Glaucoma. I was prescribed eye drops and instructed to administer one drop in each eye nightly. A month went by with no problems. Then one day I woke up and my eyelids were covered with an itchy pimply rash. It scared the daylights out of me. When I first saw my face I screamed. I began to think,”Am I contagious?” I have always had eye problems. The worst was when I lost my sight for two days, so I am very sensitive to any type of irritation around my eye area.

After seeing my face, I gathered myself together and headed to the nearest pharmacy in search of a quick fix but nothing seemed to work. I am currently on eleven different MS related drugs. Yes 11! For two hours, I blamed every one of those pills before I remembered I was taking the Glaucoma eye drops. I called my Optometrist and he said that my skin inflammation was highly unusual but recommended that I discontinue using the eye drops. As I hung up the phone, I smiled and couldn’t help but think...at least it’s not MS this time!

Because of the doctor’s skepticism, I wasn’t 100% sure if the eye drops caused the break out. The thing is, it could have been caused by any of the drugs that I am currently taking and that is what scares me. Luckily only two days after stopping the eye drops the bumps were gone.

I guess living with side effects is a part of my life for the unforeseeable future, I just hope that it remains minimal.

38 thoughts on “Side Effects”
  1. darren 29 April, 2012 on 9:34 AM Reply

    I agree with chuck and ms sufferer. cannabis all the way. I have heard of many people who managed to cut down their meds quite a bit because of cannabis.

    • Nicole Lemelle 29 April, 2012 on 6:12 PM Reply

      Darren, Who knew? I feel like I’m lost on this one.

  2. Faye 27 April, 2012 on 5:33 PM Reply

    Hi Nicole,
    May I ask what MS meds you are taking currently? What stage of MS are you in? I know it’s here somewhere…but my brain takes so long in making the search happen! ;~)
    Faye

    • Nicole Lemelle 28 April, 2012 on 4:00 PM Reply

      Linda, I’m secondary progressive and I take Gilenya.

  3. Linda Grace Cox 26 April, 2012 on 7:18 PM Reply

    Nicole,
    Shoot, I’d have screamed too!
    Linda

  4. ccsvi2891 26 April, 2012 on 12:27 PM Reply

    I personally do not have MS but I know many people that do and I understand how hard it is to to be on so many drugs and its gets really complicated. These drugs so much money that many patients cannot afford. I was wondering if you have ever heard about the ccsvi treatment? It is relatively new and I try to spread the knowledge as much as i can about it. Thanks!

    • Nicole Lemelle 26 April, 2012 on 1:12 PM Reply

      CCSVI, Yes, I’ve heard of it. It’s on my radar!

      • ccsvi2891 30 April, 2012 on 12:46 PM Reply

        what do you feel about the treatment given its controversy?

        • Nicole Lemelle 30 April, 2012 on 2:43 PM Reply

          Scared.

          • ccsvi2891 30 April, 2012 on 8:13 PM Reply

            aww, i’m sorry you feel that way.
            why do you feel scared about it?
            I’m sorry for asking so many question, I just want to know people’s opinion about it. I know of a neuro interventional radiologist offering this treatment and i’ve seen his success, so I just want to see other opinions on it. Thanks for helping!

  5. Kathy Young 26 April, 2012 on 11:15 AM Reply

    Nicole – as always – insightful and well written. Love how you share so we can all learn. And I love your spirit. FUMS!

  6. Liz M. 25 April, 2012 on 6:47 PM Reply

    Hi Nicole,

    I am so happy to hear that your eyelid problem cleared up quickly once you figured it all out.
    we all need to be ” detectives” and stay on top of all the choices we need to make with this very unpredictable disease.
    I hope tomorrow will be a better day for all of us.
    Take care to all,

    Liz M.

  7. life well lived 25 April, 2012 on 5:55 AM Reply

    I try to wean off my drugs from time to time just to see if I actually still need them. I have been able to cut back on many of my drugs this way. Still, I take what I consider way too many drugs including Tysabri which may very well cause major issues down the road, but 62 infusions in and going reasonably well.

    I have found there is a good site for MS patients to track their drugs and side effects. The cool part is the site allows one to look at all of the patients who took the drug and are taking the drug to see what side effects they have experienced. For those who stop taking the medication, it leaves a spot to record why so all those considering the drug can better know what to expect.

    I didn’t post link because I am not sure linking to other sites is OK.

    • Nicole Lemelle 25 April, 2012 on 1:37 PM Reply

      life well lived
      Thanks for leaving the comment. And its good to hear you’re doing good on Tysabri. I hear that’s one of the better drugs.

  8. Muff 24 April, 2012 on 4:08 PM Reply

    Nicole, so glad you found the culprit quickly without having to go through the whole trial-and-error route. I currently take no meds, so if something like that cropped up for me, I’d be at a loss for answers!
    Peace,
    Muff

    • Nicole Lemelle 24 April, 2012 on 4:57 PM Reply

      Muff, Thanks. You are right. Thank goodness I didn’t have to go through that. Luckily we figured it out early in the process.
      But better yet it I’m glad it just cleared up!

  9. Terry Palardy (@thoughtsthreads) 24 April, 2012 on 2:35 PM Reply

    Nice work on this one, Nicole. Issues around the eyes are very scary, and you handled this so well! Glad it cleared up, whether the drops or MS meds were responsible.

    • Nicole Lemelle 24 April, 2012 on 3:37 PM Reply

      Terry,
      Thanks you’re right, but my money is on the eye drops!

  10. Lisa Hammermeister 24 April, 2012 on 1:54 PM Reply

    Nicole, you are on quite a bit of medication. All medication has a drawback. It is either addictive, makes you sick in other ways, or makes you feel weird. It is a fact of living with MS.

    I am PPMS so I don’t take any MS drugs. I am on two Alzheimer’s drugs that have a negative effect on my system. I want to think so I put up with side effects. It isn’t easy but I have learned to coped.

    • Nicole Lemelle 24 April, 2012 on 3:39 PM Reply

      Lisa,
      You are right. Side effects remain a constant in our worlds.

  11. Monica 24 April, 2012 on 1:13 PM Reply

    How scary! I live with the same fears as I am on at least 12 different meds for various symptoms. I am so unsure of the benefits of any of them because I still feel so horrible. At what point do we draw the line to our intake of pills? I am still newly diagnosed and trying to patient while the doctors work up a good treatment plan, (more like a plan of attack, ha ha ha). I just wish somebody would discover some kind of all inclusive MS med. Hey, a gal can dream right? 😉 Feel better Nicole!

    • Nicole Lemelle 24 April, 2012 on 3:41 PM Reply

      Monica, Thanks. I do feel better. Eyes are all cleared up! Still waiting for that inclusive MS med though!

  12. Arletha 24 April, 2012 on 12:27 PM Reply

    Hi Nicole, I am so sorry you had to experience those side effects. But I’m happy you are finding relief from it. I have had some side effects from the DMD I was prescribed. My hair was actually falling out from it. I really didn’t notice that the medication could have been causing it until after I stopped taking it. I also noticed that I may have side effects from medication that are not listed as possible side effects.
    Take good care!

    • Nicole Lemelle 24 April, 2012 on 3:43 PM Reply

      Arletha,
      We certainly have to become our own little detectives!

  13. Melissa 24 April, 2012 on 12:15 PM Reply

    Yowza. Might have been a combination. Glad they cleared up!! Tell me, did you give into the impulse to play connect the dots first?? 😉

    • Nicole Lemelle 24 April, 2012 on 3:45 PM Reply

      Melissa, I did! That’s how I came up with the eye drops. At first I thought it was make up!

  14. Robert Parker 24 April, 2012 on 12:06 PM Reply

    Gakk. Side effects… I’m lucky that I’m cared for by a doctor who has never met a drug he doesn’t hate, but even the stuff he likes has SOME side effects.

    Nobody understands “everything has a cost” like us M.S.ers.

    But what’s got GREAT side effects? Being in good spirits! Hang in there!!!

    • Nicole Lemelle 24 April, 2012 on 3:48 PM Reply

      Robert,
      You are right. Everything has side effects. But to be honest, I don’t HAVE TO be on any of it!

  15. Lisa Tankersley 24 April, 2012 on 10:33 AM Reply

    I am so glad that this was an easy fix for you. My prayer is that soon they find some way to fix all our MS problems so easily.

  16. Olivia Parazine 24 April, 2012 on 10:28 AM Reply

    Oh my goodness! That is pretty scary! Here is a big squishy hug for you!! Your informative post on Dr Wahl’s diet was helpful for me, I started the whole foods diet last week and I noticed a reduction in the severity of my spasticity (so less pill dosage)….however, it is tricky when I get stressed all my symptoms start to ping pong out of control. I am happy your eyes calmed down…all of the medications are so tricky, my urologist wanted to put me on medication to calm down my bladder but i said no. It is weird, like I am trying to stay off some of the meds because I feel like down the road it is gonna be worse so I’m “saving it”. I thank you for sharing your heart and thoughts! ~~Hugs~~~ Olivia

    • Nicole Lemelle 24 April, 2012 on 3:52 PM Reply

      Olivia,
      No, thank you for keep coming back! I was pretty scared but so relieved it cleared up relatively quickly. I’m happy Wahls kind of worked for you!

  17. chuck 24 April, 2012 on 12:49 AM Reply

    yes the side effects are horrible plus what the drugs do to your kidneys…I am a huge supporter of cannabis and is my medicine of choice plus it would greatly help your glaucoma plus MS pain and spasms…I realize it’s not legal in your state yet..but you should research cannabis…it’s amazing and you don’t need to smoke it…edibles are very effective…It’s legal in my state and I use a tincture and mix into hot tea with honey…it relieves my pain nicely among other MS issues…seriously research it…I wish you well and all the best…..Chuck

    • Nicole Lemelle 24 April, 2012 on 3:54 PM Reply

      Chuck,
      I would love to try cannabis, bit…

    • ms sufferer 25 April, 2012 on 1:07 AM Reply

      i totally agree with u chuck ive had ms since was 14 luckly diagnosed early but i have been on avonex , rebif and few other drugs over the years but just made things worse have been blind, in wheel chair, and numb for months on end , muscle spasms and just pure pain then tried cannabis and totally changed the pattern of the disease from attack after attack to now no serious attacks just ear aches which r berable so i dont know its worked for me and im no stoner by any means but now i work full time and can keep going with out the disease taking over sorry to write anything its just my experience and have been reading about ms suffers on this page who are in pain and i know this would help cause ive seen the miracle my self i have my life back instead of praying every night to have my sight or arm back

      • Nicole Lemelle 25 April, 2012 on 1:41 PM Reply

        ms sufferer,

        I’m so happy for you! I don’t think Louisiana will be legalizing it anytime soon! Thanks for reading and do know that I put out new posts on Tuesdays!

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