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I am starting IVIG tomorrow

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Old 09-28-2018, 12:25 PM   #1
6thCranialNerve
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Join Date: Jul 2018
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Default I am starting IVIG tomorrow

I was dx with Multiple Myeloma in 2013. I took chemo and then had a SCT in 2015. I am cancer free.

In Jan. of 2018 I developed to diplopia. It took months to find a neurologist who would order and do the gold standard test. SNF-EMG. I started and failed with Mestinon. I had breakthrough diplopia. I started on Cellcept and have finally jumped through the hoops to be getting IVIG.

Here is the background story. I am an infusion nurse. CNRI® I have give about 100,000 Grams of IVIG over 13yrs. I am so looking forward to getting this miracle drug as I've seen it change lives.

I've suffered since my SCT and have asked for IVIG from my Oncologist; but they do not use it. I wonder if my low IG levels had been looked at seriously and I had just been given a loading dose back then and brought my levels up, I would not have come down with this.

At this point, I am just massively thankful I am getting the drug I've known I needed!
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ger715 (09-30-2018)
Old 10-02-2018, 05:36 PM   #2
ger715
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My Mood: I am starting IVIG tomorrow
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Originally Posted by 6thCranialNerve View Post
I was dx with Multiple Myeloma in 2013. I took chemo and then had a SCT in 2015. I am cancer free.

In Jan. of 2018 I developed to diplopia. It took months to find a neurologist who would order and do the gold standard test. SNF-EMG. I started and failed with Mestinon. I had breakthrough diplopia. I started on Cellcept and have finally jumped through the hoops to be getting IVIG.

Here is the background story. I am an infusion nurse. CNRI® I have give about 100,000 Grams of IVIG over 13yrs. I am so looking forward to getting this miracle drug as I've seen it change lives.

I've suffered since my SCT and have asked for IVIG from my Oncologist; but they do not use it. I wonder if my low IG levels had been looked at seriously and I had just been given a loading dose back then and brought my levels up, I would not have come down with this.

At this point, I am just massively thankful I am getting the drug I've known I needed!

Please keep in touch. Anxious to learn how you are coming along.


Gerry
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Old 10-07-2018, 04:03 PM   #3
6thCranialNerve
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Originally Posted by ger715 View Post
Please keep in touch. Anxious to learn how you are coming along.


Gerry
I had two days infusion. 1GM/Kg/day. I think I depleted my potassium because I drank a lot of H20 the day before and had stomach pains. I think I had a stomach virus before the infusion because I am still feeling it a week later. No headaches.

My vision has not improved; but seems to be worse. Not so much abdominal pain; but loose stool. I feel weak like after my Stem Cell TP.

Anyway, I guess I should look at the long picture.

Thanks Gerry!
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Old 10-08-2018, 01:54 AM   #4
ger715
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My Mood: I am starting IVIG tomorrow
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Quote:
Originally Posted by 6thCranialNerve View Post
I had two days infusion. 1GM/Kg/day. I think I depleted my potassium because I drank a lot of H20 the day before and had stomach pains. I think I had a stomach virus before the infusion because I am still feeling it a week later. No headaches.

My vision has not improved; but seems to be worse. Not so much abdominal pain; but loose stool. I feel weak like after my Stem Cell TP.

Anyway, I guess I should look at the long picture.
um
Thanks Gerry!

Becausing I take meds that lessen my Potassium, I am taking a prescription for Potassium meds daily.. Are you taking any extra Potassium? Hopefully you will be seeing some positive effects soon.


Gerry
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Old 10-08-2018, 06:02 PM   #5
6thCranialNerve
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Originally Posted by ger715 View Post
Becausing I take meds that lessen my Potassium, I am taking a prescription for Potassium meds daily.. Are you taking any extra Potassium? Hopefully you will be seeing some positive effects soon.


Gerry
I started Calcium & Potassium among others. Thanks for the input!!!
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ger715 (10-08-2018)
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