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» LymeNet Flash » Questions and Discussion » Medical Questions » To all IVIG users... safety!?

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Author Topic: To all IVIG users... safety!?
dan67
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My doctor wanted me to try IVIG but I was reading that it is made from human blood and there are warnings about possible virus, hepatitis, transmission, etc. Does anyone worry about this ! ?

Seems kind of crazy to me.

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me
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There are definitely risks associated with it, but so the benefits outweigh the risks?

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Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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Jordana
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If you need IVIG there's not much it can give you that's worse than what you've already got. There's a slight risk of getting HIV I guess and since it's all screened it's unlikely.

Or maybe there's some virus no one ever heard of, that you potentially would not have gotten if you had not done IVIG. Walking around without an immune system leaves you open to the same risk in my opinion.

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bluelyme
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Will your insurance cover it ?..there have been autoimmune reactions ...they want a muscle biopsy and i dont know if they will pay for it .

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Blue

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dan67
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Why a muscle biopsy?
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WPinVA
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Has your insurance approved it? It's crazy hard to get approval. I'd say, if you were approved then you must really need it, and then in that case, as others have pointed out, there are real risks to not doing it.
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dan67
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I haven't submitted it to my insurance yet but was mainly look for people who have used it to comment on my original question here about safety.
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Sammi
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I know it all sounds scary. Of course there are risks with blood products, and there are also risks with having decreased immune function. Talk to your doctor about risks versus benefits.

I have been on IVIG for several years and have had no problems.

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sammy
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I am concerned but need the IVIG as I have such a severe immune deficiency.

Last time I went off the IVIG for a only brief period of time, I ended up in the hospital for a long time with a very serious illness.

I currently need about triple the IVIG dose for my weight, and receive it twice as often as recommended. Knowing this always makes me feel grateful but wary...

Insurance coverage is always a fight, even with clear medical proof of need. Mine needs reauthorized frequently. Hard work for my good doc.

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sammy
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One more thought, the pharmacy & your infusion RN will keep a log with the lot #'s from your IVIG bottles. They will also put the #'s in your chart as part of documentation for that day. And I have a little log book to record the #'s for myself.

This way if there is a large recall of the blood products, it should be easier to find out if you received some. Then, depending on what type of recall it is, you will be treated accordingly.

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Rumigirl
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quote:
Originally posted by Jordana:
If you need IVIG there's not much it can give you that's worse than what you've already got. There's a slight risk of getting HIV I guess and since it's all screened it's unlikely.

Or maybe there's some virus no one ever heard of, that you potentially would not have gotten if you had not done IVIG. Walking around without an immune system leaves you open to the same risk in my opinion.

No, there isn't any risk of getting HIV from it. It is extremely well filtered, and also tested for HIV and some other pathogens (don't know which other ones.

For many of us, who have had no problem with it, the risks, and results of NOT getting it are far worse than getting it. Try increasing, severe brain damage (me), terrible infections (me and others), increasingly severe destruction of the nervous system (me). I could go on.

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dan67
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There have been documented hepatitis C outbreaks from IVIG. 100 people got hepatitis in 1994. I guess that's a long time ago and the safety measures have advanced.
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susank
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That was many years ago re: HepC.
Yes - measures much more advanced past years.
Why is your doctor wanting IVIG?
Immune deficiency? You know your levels?
IgG, IgA, IgM etc?

--------------------
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

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t9im
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Our daughter was on it for 20 treatments (over a 22 month period) and it was safe BUT you have to manage the side effects.

The main side effect is the swelling of the capillaries in the brain which creates headaches and can lead to a severe migraine. I do mean severe.

You have to take a steroid while taking the IVIG to manage and avoid the migraine.

I would listen to the nurse indicating to many a patient (I would just be sitting for two days in the IVIG center while my daughter would be receiving the treatment) he had only as a couple of severe migraines (to avoid prescribing the oral prednisone). Our first night our daughter had the severe migraine, spiked temperature and we ended up with cold compresses and calling the MD @ 2AM and had to wait till 8AM for the pharmacy to open.

I then witnessed many a patient coming down with the migraine.

So get the prednisone (yes a steroid while on the lyme meds but you are only on this for a few days) and drink plenty of water (you have to hydrate).

Good luck.

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Tim

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Sammi
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For some, slowing down the infusion rate can help lessen or eliminate the headaches.

Different brands can affect people differently. If you have low IgA, you need a product with very little IgA. I believe there are only a couple of low-IgA brands.

It can take time to find the best brand and the best infusion rate for each person.

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t9im
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Hi Sammi:

With our daughter the rate was more dictated by the fusion center hours. The nurse would try to set it fast as they didn't want to be there after their work day. It was a constant battle.

I think her dose was 2 grams per pound (body weight) and this would be dosed in over two days.

There would be some receiving lower doses over one day.

It didn't work for our daughter but I know of some children who have had great results.

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Tim

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Sammi
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Tim, I think it is terrible that your daughter's rate was based on the hours at the infusion center!

I have to have a fairly slow rate so the headaches won't be excruciating. Nurses should be even more accommodating for a child. I am sorry you all had to go through it.

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bluelyme
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Oh sorry .nurse recommended muscle biopsy to prove or disprove pdn dx so they might cover it for that reason .will ins give me a answer if i ask them?it is open enrollment now ..is there one that will cover it

..why must we fight so hard to get care ?..i gotta wait to see what neuro says and weigh if its worth it .steroids, migraines dont sound fun either

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Blue

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t9im
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Sammi:

We were able to control it (we were watchful and fortunately I could take the 3 days off each time to help out, 1 travel day with 2 days at the center) but I saw a few patients run into similar issues.

Fortunately our insurance covered the drug cost.

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Tim

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sammy
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Blue, basically all insurance has the same standards for diagnosis and coverage of all diseases that require IVIG.

One thing to find out is will it be covered under your drug plan or under your medical part of the plan? Then consider copay...

My IVIG costs over $90,000 per month, (not including nursing) that means my copay is 20% which is $20,000 per month on my medical plan.

I don't know what others do, but I have to have secondary insurance to cover my copays!

I get migraines too. We slowed the rate of infusion down as much as possible. I also get IV hydration before and after along with Benadryl and Tylenol. I have steroids on hand when needed.

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