Starting SCIG/ Cellcept Very Soon!

Learner1

Senior Member
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Pacific Northwest
I'm feeling pretty hopeless, my SCIG was approved, but the pharmacist said my dose was too high and they lowered it. Now, I have to wait all over again for an authorization for the lower dose T___T
Since when is your pharmacist practicing medicine without a license? Why is this person getting in between you and your knowledgeable doctor? WTF?

With that said, Your dose is very high for SCIG, and they're possibly maybe an upper limit to what your body can do to absorb the liquid into your tissues. When you discussed it with your doctor, did your doctor tell you that they had other patients on a similar protocol? Or are you a one of a kind And here she has never prescribed it before? I do know there are patients on 2.0 grams per kilogram of body weight per month, but they do it IVIG not SCIG
 

crypt0cu1t

IG: @crypt0cu1t
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California
Since when is your pharmacist practicing medicine without a license? Why is this person getting in between you and your knowledgeable doctor? WTF?

With that said, Your dose is very high for SCIG, and they're possibly maybe an upper limit to what your body can do to absorb the liquid into your tissues. When you discussed it with your doctor, did your doctor tell you that they had other patients on a similar protocol? Or are you a one of a kind And here she has never prescribed it before? I do know there are patients on 2.0 grams per kilogram of body weight per month, but they do it IVIG not SCIG
So my dose was supposed to be 60g/wk SCIG. The pharmacist said that dose is extremely high and would feel more comfortable with 40g per week.

My doctor didn't really say I'd have a problem with SCIG at that dose, I'm a pretty large guy so maybe that's why? I'm not sure.
 

Learner1

Senior Member
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Location
Pacific Northwest
Hmmm. Let's do the math:

60g/weekx4.3 weeks/month = 258g/mo

258g/mo ÷ 2/g/kg body weight = 129kg

129kg body weight÷ 2.2lbs/kg = 283.8 lbs. Body weight.

From your photos, unless you're 6'6" tall, it doesn't seem like you weight 283 lbs.

40/60 x 283 = 187 lbs. Is this closer to your body weight? If so, the 40g dose would be closer to the to the typical autoimmune dose of 2.0g/kg/month. As a comparison, I've been on a maximum of 118g/mo which is about 1.7g/kg/no, which is a little low but still within autoimmune dosing range and my autoimmunity was not as significant as yours, so a higher dose is likely a good call.

Three things I'd keep in mind if I were you.
  1. While IVIG is going into a vein, from my understanding, SCIG goes into tissue which must dissipate and distribute the fluid through your body. If your lymphatic system isn't strong enough to deal with this, you could end up with a permanent problem called lymphedema, which is lifelong and requires compression garments for the rest of your life. So, if you start to feel puffy, or pooling in your feet, ankles, leg or neck, I'd stop immediately if I were you, and discuss it with your doctor - you might need to switch to IVIG.
  2. 40 g or 60 g is a pretty good size dose. I'm assuming it would be divided up over 3 or 4 days throughout a week. I'm not sure what kind of side effects you'd have, whether they'd be brain swelling and headache, stiff neck, nausea or GI distress, but you might need additional support to be able to tolerate it, like Benadryl, Toradol, and/or a steroid. It's one thing to do this every 2 or 3 weeks as I've done, But another to be able to do it multiple times a week. It means a lot of drug taking and then getting off them and continually being on steroids leads to a cascade of other health issues.
  3. Gammaglobulin products should be individualized to the patient. If you have significant side effects, the product could be switched to another one, and the side effects might be better.
Anyway, sounds like you're making progress and good luck!
 

lenora

Senior Member
Messages
5,021
I just wanted to post a quick update here;


I'm feeling pretty hopeless, my SCIG was approved, but the pharmacist said my dose was too high and they lowered it. Now, I have to wait all over again for an authorization for the lower dose T___T

My symptoms are still waxing and waning, I'll have 2 weeks of severe symptoms followed by a lessening of symptoms where I can function a bit better.

I'm really trying not to lose hope but being in a constant state of derealization, dizziness, confusion, visual loss and feeling almost comatose is starting to eat at me.


Hi crypt0cult.....Where do you stand with your insurance co. and dr. at the present time? Is any progress being made at all? Sorry that you're having so much difficulty, plus the fact that everything, even insurance permission for a lower dose, takes so long. Yours, Lenora.
 

crypt0cu1t

IG: @crypt0cu1t
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California
Here goes round two!
 

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crypt0cu1t

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California
So I have completed my second week of SCIG and so far I've noticed that my good days are becoming more frequent, but the only problem is I'm starting to develop an esophageal ulcer AGAIN and don't know what exactly to do.

SCIG is definitely helping me, but it's like a sick joke.. the one thing that really helps me also makes me very ill
 

Martin aka paused||M.E.

Senior Member
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2,291
So I have completed my second week of SCIG and so far I've noticed that my good days are becoming more frequent, but the only problem is I'm starting to develop an esophageal ulcer AGAIN and don't know what exactly to do.

SCIG is definitely helping me, but it's like a sick joke.. the one thing that really helps me also makes me very ill
Why SCIG and not IVIG? (sorry if already answered didn't read the thread) bc 60g SC is … wow, I only winder if your body can absorb that amount SC?
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
Why SCIG and not IVIG? (sorry if already answered didn't read the thread) bc 60g SC is … wow, I only winder if your body can absorb that amount SC?
We tried the SCIG because of my previous reaction to IVIG (Ulcers & Anemia) which I'm seemingly developing again.

I'm pretty sure I am absorbing most of it if not all, because I'm already starting to feel better! Derealization, fatigue, dizziness is all much better.
 

Gingergrrl

Senior Member
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16,171
but the only problem is I'm starting to develop an esophageal ulcer AGAIN and don't know what exactly to do.

Is this an allergic reaction or some other type of immune response? Does it happen regardless which brand of IVIG you use and regardless of the infusion speed & pre-meds?
 
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crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
Is this an allergic reaction or some other type of immune response? Does it happen regardless which brand of IVIG you use and regardless of the the infusion speed & pre-meds?
I honestly have no idea, if it gets worse I'll have to go back to the hospital again but this time I'll push for more testing to figure out what these ulcers are
 
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