Page 1 of 2 12 LastLast
Results 1 to 10 of 11

Thread: Counting My Blessings

  1. #1
    Join Date
    May 2011
    Location
    Colorado
    Posts
    645
    Thanks
    456
    Thanked 353 Times in 232 Posts

    Red face Counting My Blessings

    Had my cardiac cath yesterday and found out that I have "pristine" coronary arteries. The cardiologist was amazed that I didn't have any narrowing at all. YEA! He did find some changes that he and my regular cardiologist think are related to lupus, but they say they are mild and not life-threatening. I have mild pulmonary hypertension, my heart muscle is "stiff" and he thinks that the small arteries in my heart muscle are inflammed and spasming. He thinks all of this is what is causing my cardiac pain and gave me a long acting nitroglycerine to try. I have to get an echocardiogram to confirm some of this.

    The experimental lupus drug I am getting infusions of seems to be helping finally. I suddenly have more energy. The downside is that I am doing more, so everything hurts more, but hopefully that will improve, too. Hoorah!

    Finally, my daughter has been accepted into a clinical trial in Texas for dysautonomia. The physician in charge is an opthamologist who has dysautonomia herself, as do her 2 children. She got frustrated because there is so little research being done, so now she is doing it.

  2. #2
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,943
    Blog Entries
    1
    Thanks
    1,406
    Thanked 1,633 Times in 1,120 Posts

    Default

    they are all definately blessings.

    i am happy for you, and your daughter.

    my memory escapes me, did you say what the experimental drug is?
    what can you tell us about it?

  3. #3
    Join Date
    Dec 2009
    Location
    Atlanta Area - Dacula and Boca Raton
    Posts
    1,818
    Blog Entries
    12
    Thanks
    382
    Thanked 404 Times in 327 Posts

    Default

    It is so good for you to have some good news to share. I sometimes think we tend to focus on the downside. As Lupies, we need to learn to focus on the upside. This is very hard as the pain does not let us do that. I always remember what a physical therapist told me. Pain is our friend.

    Hugs to you and thanks for sharing

  4. #4
    Join Date
    May 2011
    Location
    Colorado
    Posts
    645
    Thanks
    456
    Thanked 353 Times in 232 Posts

    Default

    Quote Originally Posted by steve.bryce View Post
    [B]

    my memory escapes me, did you say what the experimental drug is?
    what can you tell us about it?
    Epratuzumab is an investigational agent for the treatment of lupus. It is an antibody that binds to a protein called CD22 on B cells, which are white blood cells known to be hyperactive in many people with lupus. The researchers hoped to learn whether epratuzumab could be a safe and effective treatment for people with moderate-to-severe lupus.

    Infection is the primary concern in terms of side effects, but my rheumy says they really aren't seeing any. Most people feel like they have a mild case of the flu for a few days after each infusion: body aches, low grade fever. The clinical trial I am in lasts for one year, or four 12 week cycles. I get infusions for 4 weeks in a row and then have a couple follow-up appointments over the next 8 weeks, then start up again. It's a double blind study and I will never know for sure if I got the drug or not. I am pretty sure I am getting it, however, because of the achiness and the recent sudden improvement in my energy level. I have had a total of 6 infusions. Hopefully they will extend the study another year, and I will be eligible to stay in it.

    It's interesting to see how drug studies work. They have this checklist of symptoms that they go through with me at the beginning and in the middle of each cycle. Last cycle I actually was worse in some ways, and the doctor asked the clinical trials nurse if he was "allowed" to write that down. She said "yes, but on some of the others you can't". Also, prednisone is the only lupus drug I am "allowed" to go off of. I have to stay on Imuran, plaquinil and quinacrine.

  5. The Following 4 Users Say Thank You to Gizmo For This Useful Post:

    Peridot20_Gem (06-02-2011), ruziska (06-02-2011), steve.b (06-02-2011), tgal (06-02-2011)

  6. #5
    Join Date
    Jun 2009
    Location
    Long Island, NY
    Posts
    1,855
    Blog Entries
    3
    Thanks
    172
    Thanked 154 Times in 125 Posts

    Default

    Yayyyy! *celebration dance* That is all fantastic news. I'm very happy for you.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



  7. #6
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,943
    Blog Entries
    1
    Thanks
    1,406
    Thanked 1,633 Times in 1,120 Posts

    Default

    it is good to hear of these trials.
    glad it is going well for you.
    i would not be suitable as i have low white bloodcell count.
    i was dangerously low before medication.

  8. #7
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,742 Times in 1,211 Posts

    Default

    Quote Originally Posted by Gizmo View Post
    Had my cardiac cath yesterday and found out that I have "pristine" coronary arteries. The cardiologist was amazed that I didn't have any narrowing at all. YEA! He did find some changes that he and my regular cardiologist think are related to lupus, but they say they are mild and not life-threatening. I have mild pulmonary hypertension, my heart muscle is "stiff" and he thinks that the small arteries in my heart muscle are inflammed and spasming. He thinks all of this is what is causing my cardiac pain and gave me a long acting nitroglycerine to try. I have to get an echocardiogram to confirm some of this.

    The experimental lupus drug I am getting infusions of seems to be helping finally. I suddenly have more energy. The downside is that I am doing more, so everything hurts more, but hopefully that will improve, too. Hoorah!

    Finally, my daughter has been accepted into a clinical trial in Texas for dysautonomia. The physician in charge is an opthamologist who has dysautonomia herself, as do her 2 children. She got frustrated because there is so little research being done, so now she is doing it.
    Whoohooo! I am so happy for you! We will take all the good news we can take! Keep us posted
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  9. #8
    Join Date
    May 2011
    Location
    Colorado
    Posts
    645
    Thanks
    456
    Thanked 353 Times in 232 Posts

    Default

    Quote Originally Posted by steve.bryce View Post
    i would not be suitable as i have low white bloodcell count.
    i was dangerously low before medication.
    While you are probably right, the recent discussion about lupus lowering WBCs makes me wonder if your white count would go UP if you were able to take the drug.

  10. #9
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Hello Gizmo,

    Oh i am so pleased for you mate and if it does work out, i hope it gives you some energy you crave for like alot of we and congratulations to your daughter getting in the clinic also.

    The way things sound and you keeping we updated...a large congratulations may be on it's way for you, as the signs show well by the tests.

    ((Hugs Teri)) xxx
    Last edited by Peridot20_Gem; 06-04-2011 at 02:19 AM.

  11. #10
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,749
    Blog Entries
    9
    Thanks
    1,610
    Thanked 926 Times in 589 Posts

    Default

    I love hearing good news and yours is good news. Doing the "Happy" dance for you. I am also glad to hear that he experimental drug is working for you and thank you for providing us with information about the drug. I remember this being mentioned in one of our Bot posts some time ago. I hope that it continues to work for you... wishing you the very best.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •