Gamma globulin

[Daffodil]

Rrrr....any updates? hope you are still better!

 

[anncavan]

- lastly, i have been doing some "brain re-wiring" called Dynamic Neural Retraining System (DNRS: http://www.dnrsystem.com/). it is annie hopper's program for chemical sensitivities, but also for ME/CFS and other "conditions" -- it is like the Gupta brain re-wiring some of you may have heard about. it is mostly about relaxing the hyperactive primitive part of your brain (called the limbic system). but it is more complex than just that.

@Rrrr I'd love to hear How the DNRS is going for you! Any updates? I'm trying to decide if it's worth the $.

I did the Gupta program ~5 years ago. I found the program helpful. His big thing was how ME/CFS people are constantly scanning their body for ailments. It definitely helped me with that, and tools to change what I'm thinking about at any moment, health-wise or any other bad habit thought. I have since misplaced everything, but meditation audios. They have stayed on my phone all these years and I listen to them sporadically...just happened to pull them up the other day and boy do they help.

Would love to hear how it's going!

Hope this finds you well. Thanks for posting your big update!
Best,
Anncavan

 

[froufox]

Re Dr Myhill, I enquired about immunoglobulin/gamma globulin injections a while ago after reading this thread. The
secretary got back to me after speaking to Dr M saying that she wouldnt due to concerns about prions, however after reading here that they are filtered down to the prion level, maybe she would reconsider?

Rrrr, I'm so glad to hear that you're doing so well! It sounds really encouraging

 

[Daffodil]

hi all wondering if anyone out there knew which immunoglobulin is better to take, either subQ or IM...Gammagard,Gamunex or Gammastan?? I don't understand. If I want to do 1 gram a week, ....I just don't understand

if I don't wanna use a pump... I don't know how

this is urgent, if anyone sees this message please reply...

thanks a lot

 

[Ema]

I would use either Gammagard or Gamunex subQ and would avoid Gamastan IM as it is supposed to hurt like heck.

 

[Daffodil]

ok thanks ema. I got overwhelmed with the fog and all and couldn't understand anything. I just watched a video on how to use a pump and it looks doable. I will do gamunex C and start with a gram a week and see what happens I guess.....but I have to buy 3 month's supply off the bat....
thanks

 

[susank]

Daf - how many grams is your goal?
Sorry - cannot remember.
Or you are going to do one gram a week?
I assume you have a prescribing doctor and will need insurance approval?
For a pump?

Personally I would not bother with a pump for a gram.
I infuse a gram using a butterfly needle and push the small(er) syringe by hand - slowly.
I use the tops of my thighs.
I use the 25g 3/4" BF needles. 12" tubing. Terumo brand.
I insert the needle just under the skin - the needle lies almost parallel to the skin.
Looks much like an IV infusion except the needle is in SubQ tissue and not a vein.
I tape the needle in place with Tegaderm.

For pushing - the one set of tubing that comes with the pump can be used as well.
Like the RMS 26g 9 mm set. Thumbtack needle. I think the tubing is 18-24" long.
If pump is not used - then the flow rate tubing is not needed/used.

I'll explain more if need be.

For the pump - most people use a Freedom 60. That requires a 60cc syringe - the only size that fits the pump.
Those syringes are big - stiff - strong smell like plastic - hard to draw meds into - that's why I don't like them - and the pump.

 

[Daffodil]

hi susan

thanks for the all the info. I am just having a very hard time right now. I have gotten really sick since stopping antibiotics weeks ago and was supposed to start immunoglobulin 2 1/2 weeks ago. first, there was a mix-up with the Rx, the doctor went out of town, etc..by the time walgreens finally got everything ready, they quoted me a price which I thought was too high (I am self paying).

so then I remembered Infuserve America (I knew about them before actually but my brain doesn't work). Anyway, they are giving me a better price but I will probably have to wait another several days to get the medicine. I am much too ill now to take the bus, so I will have to pay $300 for someone to drive me to buffalo to pick up the medicine. ugh what a nightmare.

anyway, this is more information than you wanted LOL. Infuserve America will send me the stuff they think I should use to take the medicine....I have no idea what it will be. Walgreens would have trained me on how to do it with a nurse, but I just didn't want to pay more.

I am going to take 1 gram a week of Gamunex-C subQ (if I can handle that dose). It comes in 10 mL vials. I cannot take more because I cannot afford it.

Perhaps once I get my supplies, I can PM you?

Thanks a lot for the message
xxo

 

[susank]

So you are getting the Gamma from Walgreens - and have to drive there to get it?
Can they not mail it?
Could they transfer the Rx to Infuserve?
Infuserve can mail. Overnight on ice.

Usually the first time to use Gamma is in a doctor's office - in case of reactions.
That's how it is for folks with CVID.

Having a Epipen on hand would be a good thing.
Also Benadryl.

Do you know what supplies Infuserve will be sending you?
Can you call them?
They are not mailing the Gamma to you, right?
Just supplies?
Pump and supplies?
Butterfly needles and syringes?

Remember - some of these places are not familiar with using Gamunex w/o a pump.

How has your doctor prescribed it to be given?

As an injection? Like how I think Rrrr does it?

Get more info and I will be happy to help. Although really you should have a doctor or a nurse for all this.

Also - I don't think Infuserve keeps Gamunex in stock. But I think they can get the 1g vials.

 

[susank]

I wanted to add some things.

There is a youtube video of a gal pushing Gamma SubQ in her belly with a BF needle using a 30 cc syringe.
This IS NOT how I do it. No No No. No 3/4" BF needle straight in!!!

An example of a BF needle just under the skin can be found by googling: (looks like another belly shot but oh well) (i use tops of thighs)
"remote medicine blogspot hypodermoclysis" . You pinch up some skin - insert needle at a very narrow angle - let skin drop - cover with tape. I would think the whole length of needle need not be inserted - if you are needle squeamish.

I found a video of a guy (moving mannequin?) using a BF needle to infuse a drug IV.
NOTE: This a different drug. NOTE: "He" is using the BF to go in a vein.
Note: the "guy" is creepy looking. (scroll down to click on the video - skip all the mixing stuff)

http://berinert.com/professional/dosing-administration/self-administration-training.aspx

So skip to about the 8 minute mark and only note some things:

-how syringe was attached to the tubing ending
-the tubing was primed (meds pushed through tubing to just behind the back of needle)
(so no air is infused)
-the BF needle inserted at shallow angle (for us in the SubQ tissue/fat) !!! (no tourniquet!!!)
- draw back - we don't want to see blood SubQ - !!!!
-slowly push the meds in

And I do mean slowly. Even for SubQ many folks report less side effects the slower they go.

The infusion set needles are a little different. I'll try to find a photo.
I just found them a little more difficult to push with since the needle is smaller, tubing is smaller and longer.

For 1g/10cc I would push using BF needles - unless you are ordered/instructed otherwise.

Always ask your doctor, nurse, pharmacy about these things. I am none of these things.

 

[susank]

Here is photo of the infusion needle set RMS 26g:

http://www.wolfmed.com/rms42609.html

Open up the "wings" - pop the needle straight in - fold down the wings. Cover with Tegaderm (that comes with it).
(The sterile clear film tape).

I think most folks use the 9mm length. Tiny.

The sets come with just the one needle. They're very easy to use.
Just a wee bit harder to hand push with.

 

[Daffodil]

thanks a lot susan. when i am more alert, i will read your message more carefully.

there is a nice pharmacist at the hospital downtown here....she was sympathetic to my issue and she might be able to teach me. otherwise, I can maybe ask my local doctor if I run into problems....

xoox
sue

 

[susank]

Daf - good that you might get hands-on help.
Also good to familiarize yourself with the supplies - study beforehand.

I would rank the self administration as follows - in regards to ease of learning, time and cost:
(for infusing small amounts ie one or two grams)

1. Pump with flow rate tubing and infusion set tubing
2. Butterfly needle/tubing - hand push
3. Infusion needle set/tubing - hand push
4. Needle and syringe only - like giving a B12 shot.

As far as I know - the FDA and manufacturers state that a pump must be used.
Otherwise it is considered off-label use.
Some doctors and some insurance companies will not let patients use any other method than with a pump.

That is - for SubQ administration.

They would probably "wig" if they knew folks were injecting it like a B12 shot. But who knows.

I wonder if they know that patients are infusing/injecting the SubQ brands at such low doses?
And would they care?

 

[susank]

Further - in regards to a previous post in regards to Gammanorm;

I remembered and found an article from 2005 - which - if I am reading it correctly - says that in Europe they used Baygam SubQ. Baygam was a 16% IM preparation.
Everywhere else one reads - do not use an IGIM brand subcutaneously.
I often wondered about that. Why not? But don't try this at home!!!

http://www.aacijournal.com/content/1/3/120

Folks are buying 1g Gamunex vials etc because it is approved for SubQ use.
Even when they only want to use a portion of the vial.

Strange that - acc. to FFF Enterprises - the open market pricing on
Gamastan IM is ~$62 for 2cc which is 1/3 gram.
Gamunex SCIG is ~$80 for 10cc which is a full gram.

One gram of Gamastan would cost $185?

 

[susank]

There is an online medicine broker that I have used in the past.
I assume they are based in Europe.
I heard about them - ordered a few inexpensive injectables from them. Just to see if I could.
The meds cleared customs - and were just what I had ordered.

I never used the meds - I just wanted to see if they were really an option if I got desperate.
I ordered B12 ampules - a German brand - and IIRC the box had German stamps on it.
The place is legit.

They list the meds on their website. Sometimes they can get the meds - sometimes not.
If you want to buy brand Rocephin - made by Roche - you can get it.
No prescription required. You have to answer a few questions and perhaps pay a small consult fee - plus shipping.

They list immunoglobulins on their website.
If ordered w/o your doctor's approval - you would be on your own.
Again - normal procedure is receiving an injection/infusion the first time or two under medical supervision.

I don't know if they ship meds that need to be kept cool. They sell them - so dunno.
If the med is a powder I assume it does not need to be kept cold.
This I don't know either. Particularly for immunoglobulins.

They have Hizentra listed $168 for half a gram. *corrected - I think they mean one gram.
Sandoglobulin $200 for one gram. This brand not approved SubQ. But some folks have infused IV brands SubQ off-label with their doctor's approval.
Gammagard $1000 for 5 grams.
US Dollars.

I am not recommending any of this. But this may be an option under the right circumstances.

PM me -whatever - for the name of the broker.

 

[Daffodil]

susan...I was told that there is NO way immunoglobulin would clear customs. but I am going to PM you

xoxoxo

 

[deleder2k]

I think you should be careful with Gammaglobulins on your own. There will always be a chance of anaphylactic shock since the gammaglobuline comes from different donors. Its not like having a B12 shot where you check if you react to it the first time.

 

[Daffodil]

hi deleder. do you think I should have an epi pen when I take this?

I was talking to my aunt, who cannot take any IVIG due to allergic reaction or something.

I am buying $1500 USA worth of this soon so I hope to God I can take it...won't be able to get money back

 

[susank]

Daf - I have some questions to ask you. I think you need some help understanding some things - I want you to be safe. Do you want to call me? Tonight even?

 

[susank]

Deleder is correct. A reaction could happen at any time.

One needs to be very careful with blood products like Immunoglobulins.

I always have an Epipen right by me when I infuse.

Daf - questions:

You have a doctor that has Rx'd the Gamunex?
He is not requiring that you do your first few injections/infusions in his office?
Or at a clinic. Or with home health care?

You are getting the one gram vials?
But don't yet know how you will be administering the Gamma?

Have you given yourself injections before?
Know how to draw up meds? Aseptic technique? Are comfortable with needles? etc?

I think the Epipens come in a set of two. ~$400. Not cheap - but necessary - I say.
It's always better to have one than not!!! Just in case.

---------
The website I mentioned that has Gamma listed - I'm glad to know that it might be possible to get Gamma from them - just in case.

For first time "users" - not a good idea.

It's such a shame though that it's so hard to find doctors to Rx it.

Anyway - about a year ago I switched from Gammagard to Gamunex. (SubQ - self)
Perhaps I should have done the first Gamunex under medical supervision.
The switch was from a 10% brand to another 10% brand - so no problems expected.
All went fine.
Since I was hand pushing - I was able to control how fast the meds went in.
I think I pushed a few drops at a time the first several minutes. Then finished the gram - very slowly!

I was by myself - but had the house phone right by me - ready to make an emergency call.

FWIW I had read online where a gal was nervous about starting a new drug.
In humor she said she might inject it in a hospital parking lot - by the ER.
I wonder if anyone has actually ever done that. ??!!