Meds or No Meds?

Meds or No Meds?
4.4
(37)

I used to save my empty pill bottles, thinking a Pinterest craft would catch my eye and I would have a good use for my vast collection of rusty-colored medicine containers. Instead, my stockpile grew so rapidly I had no choice but to give in and trash them. Unless I plan on stuffing my walls with these things, there’s no way I can recycle them fast enough.

CellCept: the first medication I was prescribed to slow the progression and damage caused by scleroderma. (Photo by Lisa Weber)

Six years ago, I wouldn’t even take cold medicine or pain relievers unless I was in dire need. I’m talking about an emergency type of need. I was part of the health movement that believed medicine was just a Band-Aid that only covered up a chance for a cure.

While I still believe food and lifestyle choices have much to do with our health, I no longer scoff at the idea of taking pills.

Fearing the side effects

Remember the days when commercials would entertain you in between the scenes of your favorite shows? As a little girl, I would sit in front of the TV with that confused look on my face. Commercials would boast about all the wonderful things their pills could do for you. Then they would conclude with a mile-long list of possible side effects. A spokesman would talk faster than an auctioneer: “Upset stomach, headaches, brain infections, possible death …” How could anyone think those medicines were worth all those horrible side effects?

Then I became sick. My once-healthy body was attacking my internal organs. Doctors prescribed the first medication as soon as my lungs started to scar. It was a scary and powerful immunosuppressant called CellCept (mycophenolate mofetil).

Worth the risk?

The pamphlet that came with this medication terrified me. It had more than 10 pages of possible reactions, including an increased risk of certain cancers. I wouldn’t wish any of this on my worst enemy!

Doctors helped me understand that the risks of my disease were much worse than the risks of taking the medication. The only thing more frightening than the warning on the pill bottle was the list of deadly side effects caused by scleroderma.

So, there I was, holding three pills as large as kidney beans. It was difficult to force myself to bring them to my mouth. I had to let go of my perception that this medicine was dangerous. I had to embrace that it was my lifeline.

Although I had a rational understanding of why I needed to diligently take my medicine, I struggled twice a day for over three years. Once in the morning and again at bedtime. As I choked down the horse pills, I begged in my daily prayers to be kept safe. Then I would worry about what the medication could do to me, and wonder if it would be responsible for shortening my life expectancy.

A different view

You can imagine my relief when a new doctor recommended tapering off this harsh treatment. My lungs had stabilized and no further damage was occurring.

But the relief was short-lived. After just three months on a lower dose, my body waged a war against itself once again. It began attacking my lungs, stomach, and hands as if it were a hungry predator. I remember when I got the results of my lung function tests. I didn’t need medical numbers to tell me that we had made a big mistake. That medicine I was so afraid of was actually my miracle. My body couldn’t be trusted to behave correctly. I needed the medication to stay alive.

Choosing to embrace medicine

It’s challenging to live in a world in which people can share their opinions and beliefs with such conviction. The internet is always flooded with individuals trying to convince you to think a certain way. It’s almost impossible to ignore all those healthy people claiming that you don’t need medicine to be cured. After all, they are the ones literally hiking up mountains while you struggle to bring a load of laundry upstairs.

But I’ve come full circle this past year. I understand that my disease has no cure, and that medicine is my extended warranty. Since I’ve been back on the highest dose, we have halted the disease’s progression in my lungs once again.

While I can never regain the lung function I lost, I’m grateful for how it has played out. I no longer worry about each dose of the medication. I stress less about what the immunosuppressive treatment can do to me, and instead, I rejoice over what it does for me. It’s keeping me alive.

We need to stop living our lives through the experiences of others. Until they walk in our shoes, they don’t know what they would do. But I’d like to believe they would choose to fight with whatever tools they had access to. Even if it was a pharmaceutical pill.

Life is always worth every risk.

***

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Lisa is the married mother of two beautiful girls. She holds a master’s degree and currently teaches third grade. She is extremely passionate about overcoming challenges while living with a rare autoimmune disease called scleroderma. This systemic disease attacks her entire body inside and out. Still, she manages to continue doing the things she loves: cooking (poorly), building furniture, jogging (slowly), and making clothes. She will tell you everything she does is perfectly imperfect! One of her life goals is to help raise awareness for rare diseases and to continue her personal fight to survive and thrive until a cure is found.
×
Lisa is the married mother of two beautiful girls. She holds a master’s degree and currently teaches third grade. She is extremely passionate about overcoming challenges while living with a rare autoimmune disease called scleroderma. This systemic disease attacks her entire body inside and out. Still, she manages to continue doing the things she loves: cooking (poorly), building furniture, jogging (slowly), and making clothes. She will tell you everything she does is perfectly imperfect! One of her life goals is to help raise awareness for rare diseases and to continue her personal fight to survive and thrive until a cure is found.
Latest Posts
  • flare-up, Rare Disease Day, esophageal testing, reset
  • flare-up, Rare Disease Day, esophageal testing, reset
  • flare-up, Rare Disease Day, esophageal testing, reset
  • flare-up, Rare Disease Day, esophageal testing, reset

How useful was this post?

Click on a star to rate it!

Average rating 4.4 / 5. Vote count: 37

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?

14 comments

  1. Sandy W says:

    I also have Scleroderma and am on Cellcept. I had the same reactions but every time I took a pill I prayed that it would be my miracle. It has been so far. I love Lisa’s articles, they give me inspiration and comfort knowing that someone else feels the same as I do. Thank you!

    • Lisa Weber says:

      Sandy, I’m so happy it’s helping you too! It is incredibly helpful knowing we are not alone in this fight. Thank you for sharing your comment and inspiring me to keep going too! Best wishes to you!

  2. Tomisa Starr says:

    Lisa, I was diagnosed with Scleroderma 27 years ago and it has never been treated. I have lung disease, kidney involvement, heart involvement and GI involvement. My physicians keep telling me that I can self-manage it through exercise and lifestyle choices.

    When Scleroderma has damaged your esophagus to the point that gravity alone propels your food, how can you eat? When you are on Oxygen because Scleroderma had made your lungs are stiff, how can you exercise? When your heart fails because it’s beating too fast to compensate for your scarred lungs, strenuous exercise may be more harmful than beneficial.

    What you wrote about how your body “couldn’t be trusted to behave correctly” and needing “medication to survive” really struck me because, that is something my doctors seemingly don’t understand.

    It is true that to fight a battle, warriors must be properly armed. Without weapons, they cannot successfully fight. Medications are how we fight this disease.

    There are physicians who don’t understand that “Scleroderma is more than just a skin disease”.

    • Lisa Weber says:

      Tomisa, I’m so sorry your doctors haven’t helped arm you for your fight! It must feel like you are fighting all alone. This breaks my heart. So much has changed in the past ten years- so many new studies, medications… I hope you can find a doctor that will fight with you. Maybe there’s a teaching hospital close by? On a positive note, you are so strong! 27 years, no medications? Wow!

      • dorothy stoll says:

        my name is Dorothy. I have Crest with limited scaladerma. I also am a 4x kidney transplant recipient. I have been on anti rejection drugs of one kind or another most of my life. cellcept and tacrolimus. I have accepted that my body won’t last without my medications but I still have a choice to eat right and exercise to the best of my ability. Yes we are warriors and we choice our weapons. stay warm

        • Lisa Weber says:

          Hi Dorothy! You certainly have your share of challenges. I love how you put it- choosing our weapons!!! Keep fighting and stay strong! Best wishes to you.

  3. carol a haslam says:

    Hi All,
    speaking about medications.I have a question I hope to get some answers for. I have Scleroderma and other health problems. I do not take any meds for Scleroderma ..When I get the Flu shot the next day I am very sick with the flu. This scares me about getting the Covid vaccine. It is a live virus same as the Flu vaccine and I am worried. Should people with Scleroderma get the Covid vaccine? Thank you
    carol

    • Lisa Weber says:

      Hi Carol, I can certainly empathize with you and your fears. Scleroderma is an individual disease. That’s really the only thing doctors can count on- it effects everyone differently. You should definitely talk to your rheumatologist about getting the vaccine. I wish you all the best!

  4. Josie Garcia says:

    Lisa – Your article perfectly spoke to me. I was diagnosed with Systemic Diffused in 2012. All was well with all the meds I was taking until this year. Tapered off Cellcept for about 3 months and the disease ravaged me horribly in March. Still fighting the fight and doing much better than I was since this flare began. And of course, thanks to God! Be well!!

    • Lisa Weber says:

      Wow Josie! I’m so glad you’re doing better now. It’s hard for other people to understand. Our bodies just cannot be trusted. Best wishes to you. Keep fighting!

    • Oanh Nguyen says:

      Hello everyone,
      Thank you Lisa, I like your article.
      This is Oanh Nguyen. I have Scleroderma since 2014.
      I don’t take any medications. My acupuncture told me about Sulphur powder. I take his advice. Then I soak the whole body with Sulphur powder, it’s really help me.
      In the winter time is harder for me.
      At first I don’t know, but
      Now I know scleroderma has come to my stomachs. I am very scared. I read some health articles tell
      No spicy, no acidic, no fatty, for stomach problems. Advice use some turmeric in food, I will do it, I hope that’ll help.

      • Lisa Weber says:

        Hello Oanh, I’m sorry to hear that you also suffer from Scleroderma. Just take it day-by-day! I’m happy you found relief using Sulphur Powder. I’m going to look into it- thank you for sharing! As for stomach issues, I recommend keeping a food diary, along with the day’s symptoms. Everyone is different, so it is important you eat what works for you. Best wishes to you! Stay strong!

  5. Reva Pratt says:

    Lisa and others,
    I was diagnosed with CREST (Limited Scleroderma) in 2017. I started taking cellcept. I was in denial at first but trusted the rheumatologist. At that time, I didn’t have any major issues with acid reflux/GERD (or at least I didn’t feel like I did). In 2019, I started having burning in my esophagus so my GI dr did a scope and discovered that I not only had GERD but also candida in the esophagus. (The candida is a result of taking the cellcept since it lowers my immune system.) I took short term medicine for the candida but he also put me on omeprazole long term. My rheumatologist also had me switch from cellcept to myfortic. I did not make any changes to my diet. I was ok for awhile but then in mid-2020 I had major burning again so my GI did another scope with the same results. I decided to do something about my diet this time. Although I wasn’t eating a lot of sugary foods, I reviewed my diet and stopped anything that would cause my sugar level to increase including eliminating caffeine/coffee and alcohol. I tried a combination of the GERD diet, candida diet and IBS diet but was dropping weight (15 lbs total) I had no business losing. I then started seeing a licensed dietician who had me do a food sensitivity test to identify what foods I might be reacing to. I’ve been on the LEAP diet for a couple of months now. I’ve had some relief but still have occasional burning.

    I know that each person is different and not everyone can follow the same diet but does anyone have advise or experience regarding the various diets? Has anyone tried a food sensitivity diet and had good results that improved their GERD or dealing with the candida?

    Thanks for any help you can provide!
    Reva

    • Lisa Weber says:

      Hi Reva. Thank you for sharing your experience. I cannot speak for others, but I do know that diet is very important for me. Knowing what foods trigger reflux is crucial! With that said, once the muscles are damaged, food alone cannot control the issues. It’s very important that you continue to work with a good GI doctor. There are so many treatment strategies that go beyond diet and medications. It sounds like you are doing everything right! If only this disease would play fair!

Leave a Comment

Your email address will not be published. Required fields are marked *