susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
How does one switch to SubQ?
I have been getting IVIG at oncology clinic that probably will not have anything to do with SubQ.
Who else can set up the infusions? Can it be a GP? Who monitors blood levels ie trough levels and Creatinin etc?
Is this all through home health care or can be independent of it?
I am clueless about SubQ in this regard. Please advise any and all about this that I obviously don't know - or know what to ask.
BTW - what are most folks' trough levels - or their trough level goals?
For CVID - what is the usual dose for a 100 lb?
To add: I want to increase my dose - but really don't want it all in one day via IVIG. It is easier to get more infused over 3 weeks or so when doing SubQ?
-------------------- 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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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
If you switch to SubQ, your doctor will divide your monthly dose in 4. To get a higher trough level, he will prescribe a higher weekly dose.
With SubQ, you do the infusions weekly, so 4x per month. This keeps a steadier trough level.
Your immunologist or hematologist needs to continue to follow you and prescribe your SubQ IG treatment.
A home health infusion nurse will come to your house to teach you how to self infuse. If you and your doctor are comfortable with the procedure, they may allow you do self infuse at home.
From what I have read, it is best to have trough levels over 1,000. I'm lucky to make it up to 800... so I would love to go higher too.
Good luck with your switch Susan!
Posts: 5237 | From here | Registered: Nov 2007
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Sammy - thanks. I don't have an immunologist and doubt I could find one. Have tried.
I am disappointed with the internist that I have been seeing past years in regards to all the pathogens I am dealing with. I had an IVIG infusion there once - never again.
Was lucky to find an oncologist right by my house where I can get IVIG. But she will have nothing to do with anything other that IVIG. ie the only tests/treatments I get there are IVIG related.
But she does check my Imm. levels and does the CBCs and CMP's. I am just tired of going there. Tired of asking people to take me there - etc. I doubt she will prescribe/oversee a switch to SubQ.
Perhaps one of the open-minded GP's I have seen would.
Those on SubQ and self administer - do you still have to report in to a doctor at least once a month? ie the prescribing doctor? Is that the only place where SubQ'ers get their blood tested - ie the CBCs CMPs and Imm. tests? Or can one have "standing" orders for a local lab to do the routine monthly tests?
Sammy - researching IVIG I think that the "gurus" say something to the effect that they don't really know what the trough level needs to be for protection. Did I read they said something around 500?
Unlike most CVID'ers I am not as much interested in "protection" as I am the other properties of IVIG. But the more I research - the more confused I get.
The antibodies in IVIG do many things - including "neutralizing" bacteria?
ie if one has Cpn and the IVIG has Cpn antibodies - do those donated antibodies "neutralize" the antigens/pathogens?
Didn't I read somewhere that before the advent of antibiotics that folks were treated with antibodies? ie transfusion medicine?
Anyway, I would rather switch to SubQ and self administer if possible - for many reasons - including increasing the amount I receive - but spreading it out with weekly infusions.
On 20g GG-L I have maintained a trough level of just under 950.
Sammy - in the past you have mentioned that your body uses up the IVIG rapidly. It finally dawned on me that that might mean something - specific more than in general.
Like those donated antibodies are locking on to whatever pathogens you are battling - "neutralizing" them and then the attacking antibody - after having done its job "dies" itself. Hence the rapidly used IVIG and lower (than typical?)trough level pre infusion - for you.
Dunno - also - one doctor told me that whatever IVIG/antibodies that are not needed are just wasted/urinated out. This after discussing my thoughts to increase from 20-25g. Does that make any sense?
Ugh - am tired. Sorry not expressing myself very well.
I am planning FWIW to test MycoPn antibody levels pre and post infusion. Even if it means ordering the tests from an online lab.
ie have orders ready at Labcorp - go there for blood draw - then go straight to the infusion center - then from there straight back to the lab for blood draw. And maybe test again three weeks later.
This might be interesting. I wonder what my MycoPn IGG levels would be an hour before infusion - perhaps an hour after infusion - and then three weeks later pre infusion?
I guess no one else has done this?
Sammy - also know that I think of you daily - and you are one that I pray for daily.
-------------------- 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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