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My 20 years with Lupus

Discussion in 'Personal Stories' started by ClarySage, Sep 7, 2014.

  1. ClarySage

    ClarySage Junior Member

    I was diagnosed by a Rheumatologist with Lupus in 1979 in Springfield, MO and last tested positive at KU Med Center in Kansas City KS.; last test in April 1999,test were clear and taken off drugs. Never tested positive since. During my bout with lupus, I was hospitalized with aseptic meningitis, tested positive for rheumatoid factor, had joints in my hands collapse, had kidney infection, and chemotherapy treatments. Yet today, I have been free since 1999. Skeptics would say it will come back anytime but lupus is behind me and my goal is to keep it there. Today, 2014, I am 72 years old, physically active, in good health and enjoying life. I write this to assure any readers that lupus does not have to stay with you forever. My story is told on my blog but to avoid breaking rules, will not name. Overcoming lupus and getting the body back to good health is an uphill battle for sure but can be done. I am also encouraged for others by the latest research studies I have been reading. Wonderful advancements are being made in discoveries and possible treatments that could lead to remission for patients. You can find these by doing internet searches "lupus medical studies". Best wishes to all.
    Sheranda and Choosingme like this.
  2. dmarie

    dmarie Registered

    It is good that you are in a complete remission. However, as my "internet search" results showed, a complete remission is pretty rare.

    After 30 years, the best right now for me is stable. I feel awful everyday and periodically I get on a "I really want to feel good" kick. However, thinking like that causes anxiety and the start of depression. Perhaps a complete remission is in my future, but I certainly am not going to hold my breath waiting.

    To think we are not aware of the "latest" treatments and research is pretty demeaning. We are not dummies here. We are sick.

    wolf1 likes this.
  3. ClarySage

    ClarySage Junior Member

    Pardon, just meant to encourage and have hope for others. One article was just released Sept 3, 2014 by Univ of Bristol.
  4. dmarie

    dmarie Registered

    I would like to take a look at the article. Do you have a link?

  5. ClarySage

    ClarySage Junior Member

    Don't have direct link from Medscape. Sorry, not very proficient at this but wordpress is a great tool. The article explains possibility of creating a vaccine against lupus and other immune system conditions. To me that is better news than an improved drug. I always had severe side effects to all lupus drugs except prednisone. It also had side effects but couldn't tolerate anything else, I always said the drugs were as bad as the disease except they kept me alive while I tried to fight the disease. Let me know what you think of the article, there are others. I think medical society sees dire need for a cure.
    Last edited by a moderator: Feb 12, 2017
  6. dmarie

    dmarie Registered

    Thank you! I will check it out.

  7. dmarie

    dmarie Registered

  8. ClarySage

    ClarySage Junior Member

    That is another very recent one that I was excited to hear about but different. In this article, they discuss how they are doing research on the gut and how a persons personal intestinal probiotics could cause them to be prone to getting immune disorder and they talk about a vaccine to correct it. I'm not doing justice to it in my explanation. It's a very good article.
  9. dmarie

    dmarie Registered

    Ok. Your article was a bit over my head, but I think I understand now. Both are very interesting. Thanks.

  10. blackcat

    blackcat Registered

  11. blackcat

    blackcat Registered

    I to have been diagnosed for nearly 19 years with lupus I am now 41 I have been in complete remission for 8 years.I have had to fight for everything including my life on more than one occasion,living with lupus made me realise this life is not a dress rehearsal and nothing is a given and positive thinking goes a long as well as being very stubborn and not taking no for a answer.
    Musa likes this.
  12. Jessica1

    Jessica1 Moderator

    How good to read a positive story and excellent advice - thank you blackcat, I'm glad you're well.
  13. Musa

    Musa New Member

    Would you share specifics about how you were able to obtain complete remission? I'm trying to make lifestyle changes, specifically nutritional changes. Thank you for your time!
    Lupusdude likes this.
  14. Lupusdude

    Lupusdude Registered

    Hi and welcome! I have gotten good results from a paleo type life style. I am not in remission at the moment, but I'm alive and enjoying life. There are lots of good books on the nutritional benefits. Good lucktho you.
  15. Ann2

    Ann2 Registered

    Great to read some positive stories as surely must give encouragement to those who are suffering, but as with most things, no two people are alike, and we can but do, what's best for us.

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