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sarcoid hope FB

Yesterday, I posted a list of all of the known possible symptoms/complications of sarcoidosis for “Awareness Month.” The length of the list and some of the things on it were even a surprise to some people who have the disease. Since yesterday’s list was a hit, I thought for today’s post I’d simply list all of the known side effects of the treatment available for sarcoidosis.

Within our little community we have often talked about how the treatment for this disease is sometimes worse than the disease itself. There are no curative treatments offered for sarcoidosis. Treatment is for symptom management only and to reduce the potential for organ damage in whatever organ or organs the disease can be found. Remember, sarcoidosis can strike anywhere in the body!

Treatments for sarcoidosis are mostly limited to high doses of corticosteroids, immunosuppressants and low dose chemo therapy…all for extended periods of time. So, deciding if or when to receive treatment is a very personal choice and depends largely on how badly symptoms are impacting one’s quality of life and if organs are being damaged by the presence of granulomas. (In case you forgot, granulomas are those pesky clumps of cells that form in our bodies because our immune system has gone off the rails!)

With all of this in mind and in no particular order, here is a list of possible side effects from the treatments available to those of us with sarcoidosis. Just like yesterday, I am sure once I publish this list, my readers with the disease will inform me of even more side effects/complications from treatment.

There is nothing easy about sarcoidosis!

  • Weight gain
  • Mood changes
  • Moon face
  • Dizziness/Fainting*
  • Headache
  • General irritability
  • Noisy rattling breathing
  • Pounding in the ears
  • Red burning feeling to the face
  • Swelling to hands and feet
  • Brain fog – trouble thinking and speaking*
  • Blurred vision
  • Fast beating/Irregular heartbeat*
  • Chest pain
  • Black tarry stool
  • Hair loss
  • Nausea*
  • Mouth sores
  • Stomach pain*
  • Metal taste in mouth*
  • Dry mouth*
  • Increased fatigue*
  • Joint pain
  • Drowsiness
  • Bone pain
  • Feelings of anxiety/nervousness*
  • Shakiness*
  • Nerve damage*
  • Fever/Chills
  • Cough
  • Hoarseness
  • Shortness of breath
  • Lung damage/Fibrosis
  • Lower back pain
  • Increased risk for colds/flu/pneumonia*
  • Jaundice
  • Liver damage
  • Usual bleeding
  • Low white blood cell counts
  • Bruising easily*
  • Loss of appetite
  • Muscle pain
  • Acne
  • Constipation
  • General weakness*
  • Numbness and tingling to feet
  • Diarrhea
  • Edema
  • Changes in urination
  • Hives and itching
  • Skin changes/growths
  • Pale skin
  • Increase risk of cancer
  • stuffy nose/Sinus pain
  • Sore throat
  • Increased risk for developing diabetes

(*My side effects)

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