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Gizmo
06-02-2011, 02:57 AM
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.

steve.b
06-02-2011, 03:04 AM
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?

Nonna
06-02-2011, 03:04 AM
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

Gizmo
06-02-2011, 06:44 AM
[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.

SandyR
06-02-2011, 06:53 AM
Yayyyy! *celebration dance* That is all fantastic news. I'm very happy for you.

steve.b
06-02-2011, 06:57 AM
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.

tgal
06-02-2011, 08:21 AM
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

Gizmo
06-02-2011, 08:27 AM
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.

Peridot20_Gem
06-02-2011, 03:07 PM
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

Saysusie
06-03-2011, 09:03 PM
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

Peridot20_Gem
06-11-2011, 04:22 PM
Hello Gizmo,

How are the trials and tests going for both you and you daughter mate and i hope your day tomorrow is less pain free. xxxx