Living with Scleroderma

this is nothing but a curve ball

Complication with the Medication

on December 13, 2015

I was thinking of a good introduction for this post. I realized a “hello!” would sound quite inappropriate considering I’m not in the most socializing mood at the moment and a “hello” definitely feels like a conversation starter.

I’m not usually in a mood like this but today hasn’t been the best. Please don’t think this is my norm, because I’m usually a pretty friendly person.  It’s just that this just happens to be “not” the best of days for me.

Overall, I’ve been feeling more and more tired lately. I pretty much spend a majority of my days in bed, either sleeping or resting or if I’m lucky, I get enough energy to get some “productive” activity like writing or making something creative.

I saw my rheumatologist the other day and asked if there is anything that can be done. She mentioned a particular vitamin that “may” give me a boost, but, considering my “scleroderma, fibromyalgia and everything else going on” in me, it “might not” make much difference. *sigh*

We also spoke about the frequency, dosage and current positive effects of my current mess. I take so much medication that it’s so hard to know which ones work and which ones don’t. 

It turns out that some meds barely work better if you take a slightly higher dosage so it might be to my favor to take less, just to lessen side effects. 

Upon reading the side effects of my medications, there are quite an extensive list of side effects that I experience.

Cellcept (immunosuppressant): weakness, tingling sensation, anxiety, insomnia, headache, swelling in hands and feet and memory loss

Dexilant (treats GERD): muscle weakness, jittery feeling, dizziness, confusion, muscle cramps

Ranitidine (prevent ulcers in the stomach): bleeds easily, vision problems, unusual weakness, headache, drowsiness, dizziness, insomnia 

Effexor (for fibromyalgia): drowsiness, dizziness, dry mouth, feeling nervous, strange dreams, increased sweating, blurred vision

Benzonatate (for coughing and asthma): drowsiness, skin itching

Sildenafil (increases blood flow): tiredness, weakness, changes in vision, twitching of muscles, swelling of face, hands, legs and feet, shakiness, painful swollen joints, nervousness, numbness of hands, sensitivity to light, restless sleep, itching, dizziness, confusion, anxiety, difficulty in concentrating, dry mouth, increased appetite

Singulair (prevents asthma and allergies) tiredness, tingling feeling, headache

Domperidone (aids in moving food through the digestive system): headache, dizziness, hot flashes, leg cramps, dry mouth 

Prednisone (anti inflammatory): changes in appetite, sleeplessness, lower back pain, sweating, tiredness, weakness, vision changes, sweating, irritability, dizziness, headache

Xifaxan (antibiotic): bloating, headache, dizziness and tiredness

Dulera (anti inflammatory): unusual weakness, tiredness, headache, muscle aches.

You may be wondering why I’m still taking these medications if I have all these side effects. 

I have to admit, I’d rather not experience them, but I would choose these as opposed to my Scleroderma, Fibromyalgia and Pulmonary Hypertension progressing faster.

I wondered why all these medication have side effects. And why can’t there be any medicine with no side effects? 

Then I realized,these medicines are man made. They were formulated to try to fix what’s going inside us but they may also contain substances that affect the rest of our bodies.

I sometimes wish that there was a perfect medication to just treat my symptoms without any side effects.  

Then, I remember the bigger picture and the reason why I’m taking these drugs in the first place…

To try to prolong my life…

And for that, I’m grateful!

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7 responses to “Complication with the Medication

  1. Ses Jewel says:

    Hey! I would really love to connect with you. I also was diagnosed with Scleroderma and I just finished my 3rd infusion of Cytoxan. Get back to me as soon as you can.

    • kcmunda says:

      Hi Ses! I apologize, I haven’t been able to check my blog recently. If you want, you can connect with me through facebook under kcmunda@yahoo.com
      How is your body tolerating your Cytoxan Infsusion?
      ~kristine

  2. Evon Williams says:

    Hi, My name is Evon Williams. I was introduced to this illness in 1995 when my oldest daughter was diagnosed with it at the age of 16. had never heard of it either. it attacked her organs and at that time doctors was not so familiar with it. we live in north carolina. i am adding you to my prayer list. your children need you. my daughter lost her battle in 1997 and her sister lost her battle 6 months later she was 14 years old. i know it is a serious illness. it is a blessing that you are still here, God has to have a plan for your life. i just ran across your blog today. praying for your healing and peace to you and your family during this time. from what i have read your journey has been amazing.

    • kcmunda says:

      Hi Evon! I’m so sorry about your loss. Still praying for a cure. Until then, I believe in God’s promises. Thank you for your words of encouragement and prayers. God is amazing and I’m thankful for every new day that i can still breathe and spend time with my husband and kids. Thank you for your prayers and words of encouragement. I too just said a prayer for you. I pray for God’s favor in your life. Be Blessed! ~ Kristine

  3. Afnan says:

    Greetng
    My name is afnan and i am from saudi arabia
    I’v been following you in Instagram for long time
    I’v been diagnosed with scleroderma 2008
    I started with chemotherapy..five years after this treatment i was a very healthy person..
    Ad then this disease active again..
    Since 2013 i start with rituximab evry 6month
    But I don’t feel any improvement so far
    The doctors says at least it control the disease
    Any way
    I would like to ask you if you doctors recommended you that you might need lung transplants?
    I think i am at the same stag of you
    Thnak you for your amazing blog
    Never give up and always be happy ❤️❤️

    Sorry for my bad English

    • kcmunda says:

      Hello Afnan! Nice to meet you. Yes, I was also told that Scleroderma has different remission times. Its all depending on the person I think.

      I agree with the doctors, mine also say that my rituximab infusions and current medications bring my condition under control.

      I wondered if I did qualify for a lung transplant. I figured there’s no harm is asking right? so I did.

      As it turns out, my numbers from my lung tests show that I qualify for a transplant. The doctors are leaving it up to me to make the decision, but they do want to still save my current lungs.

      They mentioned that in the event of a transplant, there are always chances of rejection of the new lungs. There would be maintenance, as in double the meds I’m taking now, so that puts me on 25 different medications daily, lol. Then, possible complications, and also that scleroderma can still attact other parts of our body afterwards.

      I know they’re not trying to scare me, just letting me know probabilities. They do talk about many scleroderma patients doing great after a transplant. And I’ve met a few from instagram as well =)

      I hope this answers your questions. Let me know if there’s anything else I can help you with.

      Take Care!
      ~kristine

      • Afnan says:

        Hi
        It’s me again this time I’m writing to you from jermany from where i treated ..
        Unfortunately they found that their is disease progression
        They recommended two medications one of them is to repeat cyclophosphamide
        And the other is a new medicine Nofev 100mg weichkabseln
        Now l’m disappointed coz i have to decide which one i should start with
        If you have any advice for me or if you think that your hospital have a good experience of scleroderma
        So i can move there and see what they can do for me .
        I would be very thankful..

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