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Autoimmune disease caused by olanzapine (zyprexa), advice needed on working with doctors


matth543
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I had to take olanzapine for 6 months, this is my second antipsychotic. Ive been off it for 6 months. The first one abilify, I only took for a few weeks a few years ago and the symptoms went away on their own. I had similar symptoms as that one at first, brain fog so I didn't think it would suddenly get so much worse. I didnt want to stay on it but I didnt know why I was having issues and my family kept telling me to keep taking it without knowing anything about the drug so I did. I found out later I was just having insomnia problems and that triggered mental instability after days of not being able to sleep. I take melatonin every night now, that problem is solved I havent had any issues since stopping olanzapine. The doctors who gave it to me didnt try to figure out why I was having problems they just said this could be a mental disorder and gave me olanzapine. (Ive never been diagnosed with schiz, bipolar I dont have those) I thought I was just going to be able to get off it and the side effects would go away like they did with abilify but after 6 months I became disabled. Im going to clarify that the symptoms started before stopping or changing dosage of the medication at all and never changed, its been the same illness since before stopping the drug. I also made no lifestyle changes to warrant such an extreme disability. Ive tried over the counter medications for my symptoms nothing helps of any significance. The drug left me unable to work drive or enjoy hobbies at all, I shower I use the computer I exercise and I eat there really isnt much I can do although I do have a healthy lifestyle and diet. This is why I need help its been 6 months of nothing but torture and I cant live the rest of my life this way, Im in my early 20s I dont want to lose the best years of my life to this. I used to compete and practice every day, I want to enjoy my life again. I want to start working and move out on my own, my family doesnt have sympathy for my illness they just want me out of their house at my age, Im being treated badly I need to get this treated and move on with my life. I just want to be happy again. 

 

Symptoms: 

 

  • Fatigue, always tired, yawning all day
  • Bad coordination very 
  • Bad memory confusion less intelligent, Negative feelings amplified, hard to think positive or enjoy things. likely connected to the fatigue and inflammation. (This makes simple daily tasks stressful or frustrating, difficult to hold a conversation and have normal relationships with people)
  • Nightmares most nights
  • Overall muscle and or bone weakness, I feel strain from holding my arm up lifting things, eating, feet and legs hurt if I stand for too long. My joints hurt often, harder to use stairs. I feel very sore when stretching. 
  • Sensitive to pain
  • Extreme eye sensitivity to light, itchy, groggy 
  • Throat always stuffed I have to clear before talking. I gag cough a lot, throwing up without throwing up.  Usually when I stand up or do any kind of physical activity.
  • Heart burn
  • Rash on head neck
  • Rectal pain bleeding
  • Shortness of breath 
  • Change in taste
  • Can’t work drive do any hobbies

 

All of these symptoms started at the exact same time

 

The reason why I'm certain this is an autoimmune disease is because Ive read of many others on olanzapine that experienced the same thing after the same time on the drug and it never got better even years after stopping the drug, only worse.

 

Ive narrowed it down to two diseases. Rheumatoid Arthritis and or Sjogrens Syndrome. Here is a source of RA being listed as a possible side effect. I have been working with someone personally who got the same symptoms at the exact time frame I got it of taking the drug, hes been ill for years and its only gotten worse. He was able to get into a rheumatologist office earlier than me, and was diagnosed with Sjogrens Syndrome. He didnt have to mention the drug at all and was diagnosed the only difference is hes been ill for years and ive only been ill for 6 months so my lab work was negative and his was positive this is normal for autoimmune diseases. I may have to mention to the doctor why I really believe I have one of these diseases to be asked for additional testing, or he may just ask about my medication history which is fine. The person Im working with told me he didnt continue trying to get treatment after the diagnoses, so I wouldnt know the outcome if he did. I am very afraid of being denied treatment with their medications which are very good when someone finds one that works for them. I need advice on how to work with doctors since my communication skills are very poor, and doctors havent been nice or sympathetic to me at all in the past. I also need help finding any information I can use as sources about olanzapine and I guess antipsychotics causing autoimmune diseases, I would like something on sjogrens syndrome since its more likely what I have, thats what he got diagnosed with. SS is really similar to RA though so that might help.. Im going to bring my symptoms in as notes and any sources I can find to justify me having this disease. I may or may not have to provide information about the drug depending on many factors but I have to come prepared, this appointment is extremely important, its on November 12th. 

 

Of course I am open to ideas of this not being the suspected diseases and you can leave that info as well if you want but I want to be tested for the disease and if I am positive like the other person I can be treated if not Ill have to go that route. For advice its about the disease and the drug causing it and other possibilities second. 

 

Ive gotten mixed responses about if someone with the disease is able to get treatment, I am suffering daily and its totally effected my life to the point where I cant work drive hobbies or even have normal conversations so that should warrant treatment if Im willing to take the risks which I am. I hope I am not demeaned and they think Im making this up or something like that. Most people on the subreddit for the diseases said if one has it they should be allowed since the diseases slowly damage many parts of the body and treatment slows that by a ton, never mind the disabling effects of the disease not allowing me to do the things I need to. So how do you think I should talk to the doctor and explain everything, since when I normally talk to doctors I get brushed off and rudely interrupted and they act like Im not worth listening to or helping or something when Im suffering daily, I dont know what Im doing wrong. 


This was a lot of info, Thanks so much for reading.

 

Edited by ChessieCat
unbolded symptoms and added bullet points
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