susank
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posted
A year ago I switched from IVIG to SCIG.
I seemed to tolerate 20g IV every three weeks fairly well.
I had sooo hoped that I would do even better on SCIG - but I haven't.
I have tried changing brands. Varying the doses and days of the week. All I can think of to make SCIG work. Somehow the side effects for me SubQ are just too awful.
How could that possibly be?
So I decided to try IVIG again. Had an appt set for Jan 3rd. The morning of the infusion the clinic called and said they had ordered the Gamma incorrectly - would I mind rescheduling?
Well - yes I would. I was so mad.
They had only ordered 2g for my IVIG. How do these mistakes happen?
It is so stressful for me to get in to the clinic - transportation etc. And it has happened a couple of times before - that the morning of the infusion I would get the call - sorry - wrong Gamma or it did not come in.
Which is one of the reasons I wanted to try SubQ.
I have been pushing (no pump) past months. One or two grams per infusion. So easy to do. My schedule. Don't have to beg for rides to the clinic etc.
The planned for and cancelled infusion therefore left me low on G's. I have since had to do a few grams SubQ until I figure out what to do.
Sometimes I thnk God is trying to tell me something in this regard - but I cannot figure it out. I thought - when cancelled - that maybe meant - no - don't do it IV.
Then after infusing a few grams SubQ and feeling mentally and physically like I would rather die - I have to think - no to SubQ as well.
Do Lyme folks have particular problems SubQ vs IVIG?
Pocono - how has SubQ been going for you?
Thanks any help.
-------------------- 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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Pocono Lyme
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I'll get back to you more with any thoughts I may have. I have two appts. today.
A couple of questions. How long have you been doing gamma in total? What kind of symptoms are you experiencing after infusions? Have you had your Ig levels checked lately and have they improved?
SubQ is going well thank you. So much better than having to go to the hospital.
Will try to check in later today or tomorrow if possible. If not, definitely Wednesday.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Pocono Lyme
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Hi Susan,
Just a thought without more information. Maybe you're feeling worse due to a more steady level in your system as opposed to the IVIG wearing off so quickly as it does?
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Sammi
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posted
quote:Originally posted by susank: Do Lyme folks have particular problems SubQ vs IVIG?
Hi susank. I have done only IVIG. For myself, I don't want to infuse weekly and deal with getting all the fluid pockets etc. Some people really like the SubQ, and some have switched back to IVIG.
It took a long time for me to feel the infusions were beneficial. I switched brands several times. I had a dose increase over the summer, and this has definitely helped. I found that one brand in particular seems to be the best for me, so finally my doctor has ordered it only with no substitutions. Maybe your doctor could do the same for you.
The clinic has no excuse for not having the right med and the dose when they know ahead of time that you have an appointment. I had this happen before, and it is very frustrating.
Have you had your levels checked recently to see if a dose increase may be warranted?
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susank
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Thanks. The side effects for me have been worse SubQ than when doing IV. That is what is so strange.
The infusions go well. But days later I feel dreadful.
I have re-scheduled to try IVIG again. Next week - 10 grams to start off.
I am getting worried about it. If for some reason I cannot tolerate Gamma IV either I am sunk.
I need the G's first of all.
Secondly, I have to make some decisions.
I will lose my excellent private insurance soon and am having to decide to go with either Medicare or Medicare Advantage. If original Medicare I would have to buy an expensive Medigap supplemental plan to help pay for the Gamma. (under age 65).
If Medicare does not approve me for Gamma..... another story/more stress.
I am low/out of range IGG and three subclasses and just barely in range IGA - oddly enough with a low/out of range IGA subclass.
I was not required, did not know and therefore did not do a Pneumovax challenge years ago before starting on IVIG. So am classified "hypogammaglobulinema unspecified" and not CVID. FWIW my IGG is low/mid 500's off IVIG.
Levels to be tested next week. I have backed off the SubQ dose - to hopefully "clear" the side effects - so can make a better comparison.
I don't want to have a SubQ headache then etc. (like I have now as well fuzzy brain, fluish feeling and somehow worse depression).
-------------------- 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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Pocono Lyme
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I think your IgA needs to be evaluated more. I don't know if you can do the Pneumovax/Tetanus challenge now but am thinking you probably can.
I did both. I did a bit of a search for you about low IgA in regards to IVIG and from my understanding, you shouldn't get any blood product with IgA if you're low.
Here it says Immunoglobulin replacement therapy may be of benefit. I would find a good immunologist. I went to an immunologist years back and wouldn't recommend him so be careful. I'd probably be dead if I had listened to him.
My LLMD/ID doc manages mine and is very knowledgeable thank God.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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oxygenbabe
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I think ivig gamunex is the safest because of their unique purification process. I'm pretty sure subcutaneous is not as tightly regulated
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susank
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posted
Thanks. Ox - I have been infusing Gamunex SubQ. It is the same as the Gamunex that is given IV, right? Don't understand re: regulated.
FWIW was Dx'd HypoG 2010 and started IVIG summer 2010. Switched to SubQ March 2013.
IVIG was Gammagard. SubQ started off with Gammagard - but as not tolerating it - decided to try Gamunex SubQ. OK for awhile - but as time went by - I started feeling bad again. Side effects bad.
I had wondered the same thing Poco - maybe my body prefers the high dose that decreases vs an "increasing" or steady level.
ie to get a trough level of around 1000 - for example - that's on the "down" side on IVIG. To get that level SubQ - it takes a while to build up to it. Dunno - but whatever my body has not liked it SubQ.
Unless - something else is wrong with me that my body cannot handle SubQ - but can handle it IV.
Or else I am too sick to handle either method. Really scares me.
Sorry not making sense - still have a headache and feel fuzzy brained and fluish from the 2g I infused a week ago.
I would be thinking - well maybe I just have the flu. It's hard to tell. I never show the outward symptoms of being sick. Like coughing, sneezing etc. I feel horrible on the inside - but it's almost like my immune system doesn't mount the typical full blown response.
And I remember that my first SubQ infusion slammed me really hard. 9g. Did not expect that. Still wonder about that.
In regards to the IGA and subclasses - in 2010 my levels from one test:
(rounding off the numbers)
IGA 91 (70-400) Sub1 49 (58-263) L Sub2 21 (12-140)
I have had the total IGA even lower than that - but still within the ref. range.
The immunologist I saw - geez - what a jerk.
So my LLMD helps me - as well as my hematologist.
PS. FWIW - IIRC Sammy did SubQ for a short time and said she felt flu-ish the whole time - and does much better IV. ?????????
-------------------- 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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Sammi
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I think I started off with Gamunex and then the hospital switched to Gammagard. The Gammagard really made me sick and I went downhill. The hospital then switched to Privigen, and it has been the best for me so far. So my doctor wrote orders for me to have only the Privigen.
I have very low IgA, so I need to have a product with low IgA. I think all of the brands I mentioned here are low, but Privigen supposedly has the lowest IgA content.
I felt horrendous after the first several infusions I got. Have you spoken with your doctor about this?
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Pocono Lyme
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Sammi, That's what I'm thinking Susan needs. A product with low IgA.
When researching for her, it seems that people can mount a reaction to the IgA over time and maybe that's what is happening.
Susan, like Sammi, maybe the Privigen would be better for you. The low IgA subclass and low normal would be something to not ignore IMO.
Keep in mind that reference ranges have changed over the years. They used to average out numbers from healthy people.
Not any more. Now they average out the results they obtain in their own labs. Sick people!!!
I don't know if Privigen can be done subQ but that would be ideal for you? I feel much less stressed not having to deal with the hospital stuff, transportation,...
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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susank
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posted
Thanks. I am wondering if this could be serum sickness?
I don't have a rash - could be SLS ie serum-like sickness?
Makes sense - and I remember I have felt this way before.
All lower than standard doses - as I don't seem to tolerate much.
The above seem to be implicated in SS and/or SLS.
Has anyone had this? Symptoms?
Ugh - I have IVIG scheduled for next week.
The "sickness" is supposed to improve when meds stopped. But what about the ones with long half-lifes (lives?) like Gamma and BLA?
Help please! Thanks.
PS Would Glutathione be helpful if this is SLS? I will try to order the Glut suppositories ASAP - in the meantime will inject IM Glut/ATP What else can I do? Besides stop all meds? When this happened in the past - all my bloodwork was normal.
-------------------- 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
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Hi Susan,
I hope your symptoms calm down before your scheduled IVIG. I'll be thinking of you and praying that the infusion goes well and you tolerate it better than sub-q.
It's nice to know that others have done well with Privigen so that is another option to talk with the doc about if this Gamma infusion does not work out as we'd like.
So hold on to hope. You are not done. It's been a long bumpy road but you are on your way to finding what works to help you.
Posts: 5237 | From here | Registered: Nov 2007
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susank
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posted
Sammy - thanks. With all you have going on - it is so kind of you to respond.
I don't know what to do.
I infused 2 grams about a week ago. Felt yucky. A few days before that did a Bicillin-LA injection.
I have felt so bad - really chilled - weird neuropathy things - like Chilblains. (Pernioso?).
Can't sleep. Depressed. Irritated etc.
The flu is going around - thought maybe I was getting it - but whatever - was not going to go to doctor and risk getting it or anything else.
And this is the time of year that I get a resp. infection - so thought - I have Ceftin - will take that and hopefully ward off whatever that requires going to clinic to get Rocephin/Ceftin.
So now I feel even worse. The drugs I have been on appear to be the very ones that can cause serum sickness.
I wish it could be possible to know what has caused this - the Gamma or the Abx or both.
The weird nerve stuff I want to blame on the Bicillin.
I have felt so bad - so "out of sorts" - but not really like a herx.
I hate the idea of steroids - but wonder IF I go ahead with IVIG this coming week if I should ask for Solumedrol.
I have never really understood what the pre-meds were used for.
-------------------- 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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Pocono Lyme
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posted
Hang in there Susan. Like Sammy said, hang onto hope. Getting to the bottom of this is key.
Since your levels are still low, the neuropathy stuff could be due to that. My neuropathy gets better but not until I reach at least 600.
My LLMD just increased my infusion by 50 percent hoping to at least reach a level of eight hundred.
I didn't start "tolerating" the IVIG without feeling like something the cat dragged in until my levels hit low normal.
I'd be MOST concerned with your low IgA as that would require you to be on something with minimal IgA in it. Could you try the Privigen?
Like Sammi, you still may feel awful initially but that would be much safer for you and in the end much more tolerable. Just my humble opinion but I'd really be concerned about the IgA.
I've never been offered SoluMedrol as a premed. Only Tylenol and Benadryl to prevent the headache/allergic reaction. I only took them once due to "facility policy".
Another thought. You said you don't tolerate normal doses of meds. Have you had a saliva stress test? If your adrenals need help that could explain that in addition to other symptoms.
I can't imagine anyone getting through this nightmare and their adrenals don't suffer. Labcorp has the test that you do four different times of the day.
Typically a regular doctor will order a blood test that will only give you your morning level. That won't tell you much at all.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Thanks all help/info.
IGA per brand in mcg/ml:
Gammagard 37
Gamunex 46
Privigen <25
Those small amounts could make a big difference?
I don't think Privigen is approved SubQ.
Am so tired.. all for now and thanks again.
-------------------- 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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oxygenbabe
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posted
I am sorry you're going through this. I will tell you my own experience, but I only get small amounts because I pay out of pocket. I would like to see it covered for chronic "post lyme" (right) because it has been demonstrated to help, but that's another story. Okay
1) I did poorly on Gammagard, because of the dextrose and sodium. I got moody afterwards. I would be very thirsty and hungry during. I did not like it.
2) I do well with Gamunex, because it's in glycine.
3) Gamunex purifies with a caprylate proprietary process that is safer, because apparently it even gets rid of prions. Therefore unknown viruses, too. Although generally IVIG is pretty safe overall.
4) I get two other IV's first, so I happen to be hydrated. If not, try an isotonic saline IV, to hydrate and also drink lots of water. HOWEVER FLUSH THE LINE WITH DEXTROSE if you are using Gamnuex. You cannot mix it with sodium as it forms precipitates.
5) Drip very very very slow to the point where the nurses are annoyed. Slower, less side effects.
6) Measure your blood viscosity, check for any coagulation issues. IVIG increases blood viscosity for about 3 weeks. Perhaps some symptoms are due to you already having an issue with that. Then your sluggish viscous blood could cause issues? (Just a thought)
7) Less is more. Nobody knows ideal doses. Try cutting down your dose.
8) I believe ALL subcutaneous IVIG is less striclty regulated in terms of purity and processing for pathogens.
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susank
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posted
Thanks all.
With my IGA levels - listed above - can one still have the anti-IGA marker?
Can that be tested when Gamunex is in one's system?
The test can be ordered from regular commercial labs? As well the blood viscosity and coag tests?
I am scheduled for IVIG this week at hematologist office - but unfortunately they are not very accomodating for me in regards to "unusual" tests.
Again - I scheduled the IVIG to see if I do - in fact - handle IVIG better than SubQ.
I did not expect to feel this dreadful leading up to the infusion. Don't know what to do.
The 2g Gamunex I infused about 10 days ago - I felt pretty bad after.
Thinking I might be getting my annual bacterial infection - and wanting to head it off - for a clean slate for the trial IVIG - I took some Ceftin - and the weirdness started again - and continues.
Doesn't help that I have been on Bicillin - last injection a few days before the 2g Gamunex.
So this horrible want-to-die feeling is either IGA related or serum sickness-like related - or heaven help me - from both.
Gamma, Penicillin and Cephalosporins all implicated in serum sickness - or perhaps - SSLR -serum sickness like reaction - ie no rash.
Thanks any all further help. Sorry my scattered thoughts/writings - my brain is not working properly.
-------------------- 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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Pocono Lyme
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Member # 5939
posted
Hi Susan,
I wish I had some answers for you. I tried to research some but I don't really understand it.
Just thinking of you hoping if you had IVIG, you're OK. Hoping more so that you can get some real answers and help.
One doctor I'll be seeing next month may know the answer to your question/s. I'll certainly try to get answers from him if you'd like.
Hang in there.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Thanks. I had 2g Gamunex infused yesterday at the clinic. It dripped from a tiny bag. Am scheduled for 10g more next week.
The doctor agreed to test IGA and subclasses. I hope the miniscule amount of IGA in Gamunex was out of my system when tested. ie 12 days after last infusion of a few grams. FWIW IGA antibodies have a half-life of about 6 days.
I would like to know if the anti-IGA test would be accurate when one has replacement antibodies in one's system. Poco - if you have a chance to ask about that - would be great.
I did not see the doctor day of infusion to be able to ask. Not her specialty anyway - so she might not know.
From the CBC run that day - the nurse called and said the doctor did not think I had serum sickness.
I know I don't have the full-blown serum sickness - but for a hypersensitivity reaction - like SSLR - wonder if a CBC would be useful for that.
My opinion - folks on Gamma replacement and also on antibiotics that are high on the list for causing SS - serum sickness - need to be careful.
The research I have done on SS has surprised me.
I understand that effectively it is a "when antibody meets antigen" response. Some kind of "antigen excess" - put too simply.
Probably happens rarely. And probably difficult to distuingish from a herx.
So here is what concerns and confuses me.
We have antibodies and having Lyme have antigens (foreign substances) in our bodies.
What I did not realize is that antibiotics can be antigens.
So in a sense I have been injecting an antigen to fight an antigen. ? (Bicillin IM - Ceftin oral).
And concurrently injecting antibodies.
I have antibodies and antigens in my body. I have been adding more antibodies and "antigens" to my body. My body has been rebelling.
Endogenous and Exogenous antibodies and antigens?
SSLR? Or an auto-immune condition has been created.
-------------------- 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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Pocono Lyme
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posted
I will ask the question you posed. This is the question right?
I would like to know if the anti-IGA test would be accurate when one has replacement antibodies in one's system. (you mean the Gamunex here right?)12 days prior to the labs being drawn.
If you get some answers sooner, let me know so I don't take up his time on that.
He has a pretty strong background in immunology. When I first went to this practice, I saw a different doctor but with my immune system issues, he had me come back to see this guy.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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susank
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posted
Yes, Poco - and thanks.
Have you had the anti-IGA test run?
Are you still using the pump - or have tried to "push"?
FWIW I still feel drop-dead awful.
Either a SSLR, a horrible herx, or from the IGA content in the Gamma.
Bicillin herxes can last six weeks?
I got partial results back from labs from last week. My total IGA has now fallen out of range ie now 82 with Labcorp ref.range 91-414.
I usually hover barely in range ie mid 90's.
Curious - previous IGA tests were run in spring/summer months. This one mid winter. I think possibly there is a seasonal variation. Or else - dunno.
I guess now with low out-of-range IGG and IGA and with history of infections - that puts me now into CVID and not "just" HypoG.
Which should support my need for IVIG when I go on Medicare - too soon.
Then - if approved - wonder if I do in fact need a lower IGA product like Gammagard S/D lowest IGA or Privigen. Probably my IGA not low enough. Who knows - the results of the anti-IGA might mean something.
And of course I would rather be "pushing" SubQ than IVIG at clinic or even at home. Don't think GG S/D low IGA or Privigen approved SubQ by Medicare.
Ugh - stressful. Thanks all. I really appreciate 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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Pocono Lyme
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posted
You're welcome. I haven't had the anti-IGA done. My IgA was OK.
I'm guessing on my limited knowledge, but I would think you're feeling awful due to the IgA in the IGs.
I'm using the pump. I can switch when/if I decide to but for now, I'm OK with the pump. I'd probably only save 1/2 hour by doing the rapid push.
That's if I paid attention to what I was doing and not get side tracked. Then it would take me hours. lol For now, I'm better off with the pump.
The doctor who orders your infusions I would think should switch you to a low IgA content.
•Blood product reactions ◦History of anaphylaxis or other severe reactions following transfusion of blood products may indicate an underlying IgA deficiency.
◦Rarely, patients with undetectable IgA antibodies may develop anti-IgA antibodies of the IgE isotype.
Once sensitized, these patients are at risk for anaphylactic reactions if they receive blood products containing even small amounts of IgA.
Most patients who have anaphylactic reactions to blood transfusions, however, do not have IgA deficiency, and most patients with IgA deficiency do not develop IgE anti-IgA antibodies.
Hoping this all gets figured out for you. AND You can do subQ. I'm loving not having to go to the hospital for it.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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susank
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Member # 22150
posted
Thanks. I just got the results of the Chem panel from last week.
Sodium Serum Low 133 Ref. range 134-144
I realize that is not seriously out of range - but have never had that result.
Any experience or ideas about that? Symptoms? Causes? What to do?
Will see if the doctor's office calls me about it.
Oddly enough - when at clinic last week for the low dose IVIG - when I mentioned some of my symptoms - like tingling and numbness - the nurse said IIRC it could be from low sodium.
Some other things on the panel are in range but barely.
Still trying to figure out why I feel so dreadful - headache, weak, pains, fatigue, depression etc.
From the Gamma? SSLR? A horrible extended herx? My last Bicillin-LA injection was three weeks ago. 1.2 mu. I guess still some B-LA in my system. ?
-------------------- 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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