Starting IVIG Gammagard, low dosage

[elained]

Dear PID folks,

So I saw my marvelous Immunologist today. She's so fantastic. She's starting me on IVIG of Gammagard, but only 20 mg to start with.

Since I had reactions to the sub cut, she's hoping that maybe I can get some benefit out of fewer treatments, further apart. I might (probably will) have a reaction, but then I could get some 'good weeks' in before the next IVIG.

Well, we will see. She wants me to start before the end of the month, but more realistically I imagine it will be January sometime.

Her idea is that I should get at least three treatments in to get me through January and February and March.

We'll see!

Last week everyone at my house, three adult males, were sick with a terrible cold/cough. And I did NOT GET IT.

So I imagine the subcut was helping me, even tho' my body screamed bloody murder at the foreign antibodies that came with it.

More to follow.

Hugs, Elaine

[glowing]

I bet that made you feel good, being the only one not to get sick. Makes you realise how things can be when they get it right for you. Fingers crossed for the ivig.

Glo x

[elained]

WOW, I'm scheduled for December 19. I'm really rather anxious about this, actually.
What:
Infusion Visit with INFUSION 16 CHAIR
When:
Thursday December 19, 2013 10:00 AM (300 minutes)
Where:
Duke Specialty Infusion Center (DUKE MORRIS BUILDING)

Hugs, Elaine

[maybabies]

I hope your infusion goes as well as mine went! I did get cold...you may want to bring a blanket....I was hungry and I did bring some snacks with me . Be ready to visit the restroom often! I drank A LOT of water and drank water during my infusion! Hugs to you!

[elained]

Thanks for the ideas, maybabies. I'm not anxious about the procedure so much as I am about a delayed reaction. There will be one, for sure. In fact, I'm having an 'extra reaction' right now, not started by one of the infusions I had from August to November. But my entire immune system is easily set off now because I had so many episodes in a row.

I'm in day 5 of fatigue, pain, depression, and itching and burning, and tingling skin. I know I can get through this, and her idea is that I'll just have one reaction a month, with time to recover, rather than just one reaction after another every week, which finally just blurred together and never stopped.

I want to be healthy and I know I can do this. I"m just surprised that it is happening so soon, and that since there will be more 'stuff' in my system, I may have a bigger reaction. On the other hand, maybe not.

As my doctor said, we are just taking it as it comes to see how it works out. And she wants me in a safe setting for the IVIG, so it will be at a very specialized center.

I'm sure I'll be fine, but I was hoping to have Christmas without being quite so miserable.

Hugs, Elaine

[maybabies]

Wow, I hope your infusion goes well...with no or little reactions. I went in scared, nervous and anxious. I think this is a normal feeling! Keep us updated on your infusion! Peg

[elained]

Two days until IVIG day. I'll premedicate Wednesday with 4mg Medrol and then Thursday, with 4 more MG Medrol.

I hope that calms the reaction a bit. I have not had any prednisone before my infusions, earlier. I want to be optimistic, but 4mg doesn't seem like much to me.

But I don't know.

My neurologist who is addressing my profound peripheral neuropathy has found that I have a copper deficiency, which is so rare as to be almost unheard of.

I'm taking a copper supplement, tho' it is impossible to even find guidelines on supplementing for copper deficiency, it is so rare.

He tested me for Celiac's Disease, on the off chance that I was having mal-absorption issues which caused the deficiency, but I tested negative.

I was glad about that, but he seemed to hope I had Celiac's because it can be turned around rather quickly with a change of diet.

Most of the forums are very quiet now with everyone busy with Holiday shopping and preparations I guess? Or maybe fewer issues this time of year.

I just want to get on with the IVIG, and hope for the best.

Hugs, elaine

[john]

Hi Elaine,
In case i get the timing wrong, just want to wish you the best for IVig day!
I'm keeping my fingers crossed that you don't get a bad reaction, and hope to find you your normal happy self by the weekend!
John

[marksmom]

Elaine,
Did an immunologist order the celiac test or was it a GI doc? Because I think I recall reading that lack of antibodies found in people with deficient immune systems can affect the reliability of the blood test for celiac. Just a thought!

Rachel

[s162216]

Dec 17, 2013 23:41:44 GMT marksmom said:

Elaine,
Did an immunologist order the celiac test or was it a GI doc? Because I think I recall reading that lack of antibodies found in people with deficient immune systems can affect the reliability of the blood test for celiac. Just a thought!

Rachel

Its only if your IgA deficient that its an issue, and if I remember Elaine doesn't have any IgA deficiency so the blood test in theory should work fine. In case of a positive result for ceoliac disease they have to do an endoscopy of the micro-villi (the 'gold standard' test) anyway to confirm for definite as the blood test can be easily give a false result.

Sam

[elained]

This is my Celiac test results:

IgA 46 - 287 mg/dL 125 (HOW Can this be HIGH? It was 106 six months ago, but still in the normal range?))
Testing Performed By: CLIN IMMUN RM108 RES PARK BLDG III DUMC DURHAM NC 27710
Tissue Transglutaminase IgA <19 units 2
REFERENCE RANGE
=============================
Negative: <20 units
Weak Positive: 20-30 units
Moderate to Strong Positive: >30 units

THEN there was THIS confusing message with my test results:

"This antibody test was negative for Celiac disease (gluten-sensitive enteropathy).

Note that you had an elevated IgA, however, this is of doubtful clinical significance.

Please share this result with your primary provider and other treating physicians."

Now, my IgA is slightly higher than it was, because I've been infusing, I guess. My IgG is a good deal higher:

Here are my immune factors taken three days before (I give LOTS of blood in tests these days).

IgG 588 - 1573 mg/dL 469 (This was 388 6 months ago)
NOTE: African-American reference ranges differ slightly from
those listed. Please call the Immunology Lab at 684-6939
for race specific ranges.
IgA 46 - 287 mg/dL 128 (This was 106 six months ago)
IgM 57 - 237 mg/dL 22

You know, I just get more confused as time goes on.

I really think I won't ever understand anything. I just hope not to get sick!

Hugs, Elaine

[s162216]

IgA would not increase from the infusions as they contain very little (usually <1%) IgA, and the results that you'll get will vary between tests due to different labs, any illness your experiencing (as you will produce more in response) etc and you would expect there to be some variation. Not sure why they would say you had elevated IgA unless they missed a zero off? If your concerned I would give them a call to check they input it right as it could just be a mistake (they do happen!).

At least it indicates that your unlikely to have ceoliac disease (something which I've been tested for by endoscopy quite a few times, and ironically actually led to the discovery of me having CVID as I kept getting an inconclusive result on the blood test!). I hope the IVIG goes well.

Sam

[mali42]

Hi Elaine
Good luck for Thursday, we all think the worst on our first ivig but I'm sure you will be fine, drink lots the day before and take a good book or magazine because they will probably run it slow your first time, i was there for 6 hours my first one on a very small dose.

Malcolm

[maybabies]

Elaine, I hope your IVG goes well...I think it will! I was surprised at how well mine went and am no longer worried about my monthly infusions. I did get COLD, so next time I will bring a soft blanket! I will also bring my own drinks/ water and snacks because I was hungry...Just some suggestions. My infusion took four hours. I was tired and restless from sitting so long! You will be making many trips to the "potty".

You will be in our thoughts on Thursday! Let us know how things go!

Peg

[glowing]

Fingers crossed Elaine.

Glo

[marksmom]

Thanks, Sam --- Mark does not have IGA, that must be where I got that from...I remember they scoped him when testing for celiac because the blood test would not be conclusive. Trying to help!
Best of luck, Elaine -
Rachel

[elained]

IVIG done today. 20 GM Gammagard. It only took about 2.5 hours, really. I hope they give me more next time. I really want to be stronger and healthier.

As always, I have no problems with the actual intake of IgG…..but there's a reaction 48 hours later.

Now the RX for Medrol says to take one a day….so I guess if I do that, I may not have a reaction at all.

Stay tuned and we'll, see.

Hugs, and thanks for all the good wishes.

Elaine

[s162216]

Great that it went so well Elaine, hopefully you won't have any adverse effects, but as the Ig is already in the blood rather than being absorbed like the SCIG I don't think you'll have any delayed effects.

Sam

[maybabies]

YEAH! Kind of like filling up your car with gas! Keep us posted! Peg

[john]

Think POSITIVE Elaine, and you'll be fine!!! Glad you've got over this hurdle and now you can enjoy the holidays.....Happy New Year!