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IViG adverse reaction

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8 years 9 months ago #57380 by camper
IViG adverse reaction was created by camper
I had an IViG treatment two weeks before Thanksgiving. Following my IViG treatment, I experienced severe migraines. After the headaches subsided, I had tendinitis so bad in my left ankle, that I made a trip to the ER. My regular doctor consulted with my hematologist who said it was from the IViG treatment. I am experiencing severe pain (tendinitis) in both feet, ankles, elbows, knees, and left thumb. It tends to jump around, sometimes in one joint, and sometimes in several. My doctors have me on anti-steroidal anti-inflammatories (I can't take steroids. My blood pressure spikes.) and Hydrocodone. Has anyone else experienced this? If so, how long will this last? Has my ITP led me into something else? Lupus? Fibromyalgia? MS? I could really use some encouragement and support. Thank you.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 9 months ago #57383 by Sandi
Replied by Sandi on topic IViG adverse reaction
I've never heard of that reaction to IVIG, but that doesn't mean it couldn't happen. Are you sure that you have tendonitis and not joint pain?

Rituxan triggered Lupus for me because I had serum sickness from the drug. You should probably see a Rheumatologist for additional testing.
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8 years 9 months ago #57390 by camper
Replied by camper on topic IViG adverse reaction
I was told tendinitis because the severe pain comes from the movement, the tendons, versus the joint. My hematologist said that about 6% of people have tendon OR joint pain from this treatment. Thank you for replying.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 9 months ago #57394 by Sandi
Replied by Sandi on topic IViG adverse reaction
When I was having joint pain, it definitely hurt to move. I had trouble bending and straightening my arms. Is it symmetrical?
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8 years 9 months ago #57395 by camper
Replied by camper on topic IViG adverse reaction
Rarely symmetrical.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 9 months ago #57401 by Sandi
Replied by Sandi on topic IViG adverse reaction
Hmmm. Lupus and RA are usually symmetrical. If it's not getting any better, I'd definitely see a Rheumatologist though.
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 9 months ago #57415 by Hal9000
Replied by Hal9000 on topic IViG adverse reaction
I had a marathon five day treatment of IVIG which started Oct 31st. I do remember an odd pain perhaps like you are experiencing. It was in my left lower leg calf about where the muscle and tendon meet. As I recall it lasted days 5, 6 and 7. Obviously your issue is lasting much longer.

At the time I attributed the pain to the Dex steroid premed since the pain went away roughly when the steroids seemed to wear off - which then started a headache for 2 and a half days.

Sorry, that's all I got...
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8 years 9 months ago #57429 by Sandy Too
Replied by Sandy Too on topic IViG adverse reaction
camper, so sorry to hear of the added difficulties. I had a IVIG reaction, but it was anaphylaxus.
What I might suggest. Find out what the name of your IVIG. Mine was Gammaguard, (by Baxter I think). Then google the name and the word monograph". This will take you to the drug company trial information for that drug. It is a wealth of knowledge about any drug and will tell you in plain English what warnings, or reactions were experienced by trial drug patients when it was being tested and even includes major reactions called in by physicians after the trial was over.
I found out my IVIG reaction was caused by a immunoglobulin deficiency. There was a black box warning with the insert to the gammaguard. There is often even a 1-800 # to the drug company to call about reactions.
I have been speaking with Roche recently about Rituxan, and they were very helpful.
All the best to you and good luck to feel lots better soon.
Sandy Too