posted
I really want to try subcutaneous (or intramuscular -- but at home, not IVIG in a doc's office though my doc can write a script) and my insurance will not pay (after years of battling them).
So I'm wondering if anyone has successfully gotten onto patient assistance programs (for cheaper GG) anywhere and how much the out of pocket cost was?
And also, generally, if anyone has shopped around and found the least expensive GG and could tell me where to order?
Also, how long until you noticed a difference as I want to figure out the minimum time I would have to do it to determine if it's worth the cost.
Thanks!
Posts: 929 | From Massachusetts | Registered: Oct 2007
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susank
Frequent Contributor (1K+ posts)
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posted
Have you been on GG replacement before?
Are your IGG etc levels low?
How many grams were you thinking about infusing per month?
FWIW I am concerned about this as well - when my insurance stops and if I don't qualify under Medicare.
There are patient's assistance programs - but I wonder if you need to be on their product to qualify.
Also FWIW when talking to Infuserve last week about Glutathione - I asked their price on GG.
Seems like Gammagard/Gamunex around $100/gram.
I could - maybe - afford a gram a week - if that. (and with the troubles I have been having - maybe that is all I could tolerate anyway).
Don't even know if that would be even worth it.
I have read where Dr Teitelbaum finds the lower doses - IM? - helpful for his CFIDS patients.
Really - could those low doses really help?
Some folks seems to think so - against EBV etc.
PS. Just remembered when talking to Infuserve last week - they had some Gammagard that someone ordered that was not picked up. Sounds like they could make a "deal" on those bottles - IIRC they were the 2.5 gram vials. For SubQ - I am assuming you would be wanting to "push"? ie w/o needing the pump and all that goes with it?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
From what I understand you need to be taking it for quite a while to notice any difference.
I think the other thing you would have to find out is exactly what dose you actually need.
Obviously, if you were truly going to consider this, it would have to be a very well thought out plan so you don't run out of money without getting any benefit.
Good luck, keep us updated!
Posts: 169 | From The Poconos | Registered: Jun 2011
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oxygenbabe
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posted
I knew after only 1 gram of IVIG that it was helping me. I use 5 grams a month--it's expensive. Out of pocket. At the doc's office. I don't know about sub-q tho.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Thanks everyone -- I *did* have an IgG1 subclass deficiency on testing, and was diagnosed with hypogammaglobulimea which should be covered, but we appealed to my insurance for over two years and they simply wouldn't cover it.
So I have reason to believe it will help -- plus just read Dr. B. chart saying it seems to be essential for those who have really chronic, intractable, neuro cases plus CFIDS (which is me) -- so I feel like I need to give it a go.
Oxygen, that's great you noticed a diff. in one dose -- what did you see right away? It would help to know what to look for -- more energy, fewer infectious symptoms, cognitive??
And yes, Pony, agree about dose -- I would probably start off very small anyway as I'm pretty drug sensitive to immuno-modulating agents.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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susank
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posted
You have a Dx of HypoG?
What were your levels? IGG and subclasses.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Lyme/CFIDS: Can you provide a link to the Dr. B chart, or show us where to get more info?
This is the first time I've heard that..
Posts: 169 | From The Poconos | Registered: Jun 2011
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oxygenbabe
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Well--I can hold something in my hand and "feel" how it is so...I'm SUPER sensitive. But I started with 1 gram (threw out the rest) in case I didn't tolerate it. It's IV after all. I wasn't having cog issues... I felt stronger, happier, and a sense of wellbeing. I wish I could do 10 grams a month, not 5. It *should* be covered for chronic "lyme" as it's in the literature as helping, and even Steere admits that antibiotic resistant arthritis is due to immune responses to OspA and talks of a patient who got better using plasmapharesis, I think--something that lessened the antibodies. It balances your immune response. Passive antibodies strengthen it, and the long chain sugar on IVIG, helps quench autoimmune. So moves it more toward a balance.
There are 1 gram bottles but I have no idea how they use them. The 2.5 gram bottles, they manage to hang on the IV line by jerryrigging tape, and spiking the bottle. You want as much as you can from the line itself...
Drip super slow. I had read that subQ is not as filtered--not necessarily as safe. I use gamunex, it has a proprietary filtering process that makes it the safest.
Posts: 2276 | From united states | Registered: Jun 2004
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oxygenbabe
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posted
What I mean is, the 1 gram bottles are really tiny. So maybe it is siphoned out with a sterile syringe and done as a slow push? You could start with 1 gram for $100.
Posts: 2276 | From united states | Registered: Jun 2004
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susank
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posted
I get the 1g Gamunex bottles for SubQ.
I have understood that all Gamunex-C is the same. Same bottles used - IV or SubQ.
I use spikes on them - but that creates bubbles.
The straight needles don't.
I never much paid attention when I was getting IVIG - just knew a bag was hanging there. I guess the Gamma comes in bottles and is transferred to bags for IV?
I guess I will find out Wednesday as I am scheduled to try it IV again.
The clinic ordered only 2g by mistake - and I will end up using them after all.
I think I have SSLR - a serum sickness like reaction - probably from Bicillin and Ceftin. Hopefully not from Gamma - hence the 2g trial.
The cheapest way to do Gamma appears to be SubQ "push" with just a butterfly needle and a syringe. That is what I have been doing for months - so easy.
I'll be so mad at myself if the SSLR past months has been from Abx and not the Gamma. I have blamed the Gamma but now think it was the Abx.
The company "Fffenterprises" lists "cost" prices of the various brands for IVIG, SCIG, and IM.
10cc/1g Gamunex approx $80.
2cc Gamastan IM approx. $60.
IIRC approx. 6cc Gamastan makes a gram. ***
With IM all you need is the needle/syringe.
SubQ "push" all you need is needle with tubing/syringe.
I sooooo don't want to have to go back to IV.
Dang - I wish I had never started on antibiotics. The long-acting ones seem like such a great idea -except when you want it out of your system ASAP.
How is a patient supposed to be able to tell a herx from a serum sickness like reaction?
Please others - be careful.
*** Re: IGIM/Gamastan
Hizentra 20% 1g is 5cc Gamunex 10% 1g is 10cc Gamastan ~15% 1g would require ~6-8cc?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Rumigirl
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posted
Have you filed a complaint with your state AG's office re your insurance company's not covering it? That is, if you qualify under a particular diagnosis? It doesn't just go by diagnosis, it goes by very specific test results, depending on your dx.
I would do that first, as it it prohibitively expensive otherwise to get the dosage you would need----which also depends on your diagnosis.
Do you not qualify for a dx of Common Variable Immune Disease? I gather not from your posts. If you did, they would have to pay for it. check with your doctor.
After trying the above, if it is a dx that they should cover, you could hire a lawyer to fight it. If it worked, it would be cheaper than trying to buy a few grams out of pocket! The dosage you would really need would NOT be affordable out of pocket.
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