posted
I got my second dose of Ivig some days ago. Still a tiny dose (3 ml), but I was totally wiped out after it (and still am). Sooo tired. And unfortunately it didnt touch my terrible neuro pain.
I did not get the headaches and flu-like symptoms some people reported of.
So Im unsure if I should continue. I am supposed to get a higher dose next time.
Do I need more patience or did Ivig help you immediately? I definitely dont want my energy to get worse because of Ivig. I know how long it can take to get your enery back.
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi sickmate. I also get IVIG. It is not something that is a quick fix.
I have now had seven monthly infusions. For about half of these, I felt terrible for days afterwards. This past infusion I had a couple of down days right after the infusion, but then I felt better.
There are a lot of variables to consider including your infusion rate and the brand you are using. It can take some time to find the best for each. It is good that you do not get the headaches or flu-like symptoms, so your rate is probably good. Also, if it is helping your immune system this can cause you to herx.
I think you need to give it much more time and see how you do after being on the full dose for a while.
Hang in there okay?
Posts: 4681 | Registered: Oct 2000
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posted
sickmate - My son receives IVIG treatments and has had 13 so far. In the beginning he had horrible migraines, heart palpitations and fatigue. The IVIG was slowed down, reformulated and tweaked until these symptoms got better or even subsided.
He just had a treatment done over a week ago and still has fatigue.
Overall, he has had some increase in energy, but still has chronic pain, irregular sleep patterns and short-term memory problems.
I am looking into parasite treatment. See poster glm1111 posts on the subject ("Parasite Warrior Thread"). It may well be the missing link to getting rid of the chronic pain.
FYI-His LL Immunologist told us that it takes longer for those patients who have been ill for a long period of time (13 years for my son!) to see improvement.
I agree with Sammi - you should continue with the IVIG. We know that with this disease, what works for one doesn't necessarily mean it will work for another. We just have to keep on fighting it any way we can!
Posts: 8981 | From Illinois | Registered: May 2006
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I had the same experience as Sammi.
I'm into my third year. It isn't a quick fix, at least not for me. Been sick a long time though.
Hang in there. It'll get better.
-------------------- 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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posted
Got my third Ivig treatment and am two days later still recovering from it - so tired that I could sleep while sitting at a table. Pain still the same.
I try to be hopeful about Ivig but its so hard to see any advantage in it at the moment.
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
sickmate, the first few days after the infusion can be tough especially in the beginning. It is going to take time.
I think I get 30 mg per infusion, but I get it only once a month.
It still seems to be a tiny dose compared to your 30 mg per infusion.
Thanks for your encouragement, but Im not sure how long I can handle this. I have to function at least a bit.
But Im glad you write side effects will get better with the time.
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
sickmate, I got very sick from the first several infusions and I was also considering stopping them. I actually feel like the last infusion was beneficial, so I am glad I stayed with them.
I was told by my Lyme doctor that IVIG can cause herxing in some people. It did for me. Since the infusions are helping the immune system, it makes sense it could cause a herx.
Hopefully as you build up your dose and your body gets use to the infusions, things will improve. It definitely takes time.
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Hizentra or Gammagard?
For example 1 gram of GG equals 10 ml's.
Hizentra doses are lower than for GG.
But still measured in grams.
-------------------- 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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Still curious how others did on ivig.
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
It took me a couple months before I started feeling benefits of IVIG.
Then I got so used to it that I could feel when my trough levels were dropping. I would start to feel fluey and sicker in general with extreme fatigue when I needed another dose.
Sickmate, stick with the IVIG. If you qualify for it, your body needs it, you will feel better with it.
My insurance co changed this year and has denied my treatment so far. They are requiring my doctor prove that I have the immune deficiency again.
I've never felt worse than I do right now being off the IVIG. IV antibiotics have not been enough to keep me well during this time. It's truly horrible.
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