IVIG infusion treatments for Bronciectasis
After doing my IVIG infusion treatments every four weeks for two years now. I have always wanted to know what is the end game on my treatment. Is this something that I will be taking the rest of my life? My immune system is always low and I know this keeps me from getting sick, but there seems to be no light at the end of the tunnel. Having Bronchiectasis after my Pneumonia has been a pain in the ass. I told my pulminologist and Allergist that I feel like a lab rat and that they don’t know how to treat me. All they do is laugh and said this is the step we have to take.
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
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Hi there @kpost2. Your statements in your post sound like you are unsure of your treatment or lack trust in your healthcare providers. If that is the case, you may want to consider getting a second or third opinion. If that is the case; If it were me, I would go to the nearest medical institute for help. May I ask what state you live in?
Terri Martin., Volunteer Mentor
@windwalker
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@kaypost2 Hello. I found a link about low IGg that is very informative and an easy read. I have read it. In the first or second paragraph, it states that Immunodeficiency can be easily misdiagnosed (and difficult to diagnose). It also says that if you are in a consistantly low range; gives options for treatment. After you have read the link, will you add your thoughts about your situation? https://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/igg-subclass-deficiency
irene5
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Well, that is one very interesting article. Thank you Terri. (Irene5)
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clpc
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Hi. After MAC diagnosis, I had immunology tests, and discovered my IgG was low–below ref range. I was started on Hizentra weekly infusions about a year ago, which I administer myself subcutaneously, and now I test in normal range for IgG. HIzentra is IgG from pooled blood sources. I used to shiver a lot and had to take hot baths in afternoon to stop. Now the shivers have gone away. Docs don't pay any attention to my report of shivers, but nurses say lots of MAC patients have them. I also do not get as many Upper Respiratory infections. Note– I did not have terribly low IgG, and a second immunologist said she would not have prescribed the HIzentra. It has made my hair thinner (I blame it anyway). And it has goofed up an annual test I do which is a biomarker for a certain type of thyroid cancer because I now have thyroid antibodies — so I will go off Hizentra for a month to do the test.
Terri Martin., Volunteer Mentor
@windwalker
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@clpc Hi. After MAC diagnosis, I had immunology tests, and discovered my IgG was low–below ref range. I was started on Hizentra weekly infusions about a year ago, which I administer myself subcutaneously, and now I test in normal range for IgG. HIzentra is IgG from pooled blood sources. I used to shiver a lot and had to take hot baths in afternoon to stop. Now the shivers have gone away. Docs don't pay any attention to my report of shivers, but nurses say lots of MAC patients have them. I also do not get as many Upper Respiratory infections. Note– I did not have terribly low IgG, and a second immunologist said she would not have prescribed the HIzentra. It has made my hair thinner (I blame it anyway). And it has goofed up an annual test I do which is a biomarker for a certain type of thyroid cancer because I now have thyroid antibodies — so I will go off Hizentra for a month to do the test.
@clpc That is interesting stuff. Please keep me posted on whether they put you back on it and if your thyroid antibodies straighten up. We have several members in our group who are also experiencing immuno-deficiencies and got mac. I will see if I can connect them to you.
Terri Martin., Volunteer Mentor
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bennb023
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Hi. I have cvid and treat weekly with subq ig . My treatment is for the rest my of my life since the iig gets used up. Unfortunately, my immune system won’t heal. I have been treating for. 3 yrs this coming Jan. It has helped tremendously with infections. I don’t get sick as often and have not needed I’ve antibiotics to get better. I also have mac. I have not noticed any hair thinning.
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Terri Martin., Volunteer Mentor
@windwalker
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@bennb023 Hi. I have cvid and treat weekly with subq ig . My treatment is for the rest my of my life since the iig gets used up. Unfortunately, my immune system won’t heal. I have been treating for. 3 yrs this coming Jan. It has helped tremendously with infections. I don’t get sick as often and have not needed I’ve antibiotics to get better. I also have mac. I have not noticed any hair thinning.
@bennb023 I am so glad that you are doing well on the IV treatment. Does that alao help ro keep the mac at bay?
@windwalker Hi there @kpost2. Your statements in your post sound like you are unsure of your treatment or lack trust in your healthcare providers. If that is the case, you may want to consider getting a second or third opinion. If that is the case; If it were me, I would go to the nearest medical institute for help. May I ask what state you live in?
I live in Nebraska. I have an Appointment today with my Allergist. She is the one that my I.V.I.G. treatments are with.
clpc
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@kpost2 I live in Nebraska. I have an Appointment today with my Allergist. She is the one that my I.V.I.G. treatments are with.
I really recommend Hizentra that you can give yourself once a week. You get smaller dose at time than IVIG but then you don’t get much reaction
@clpc I really recommend Hizentra that you can give yourself once a week. You get smaller dose at time than IVIG but then you don’t get much reaction
She mentioned Hizentra yesterday also. She sent me a video about it to watch. Haven'[t watched it yet.
Brenda R.
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@kpost2 I live in Nebraska. I have an Appointment today with my Allergist. She is the one that my I.V.I.G. treatments are with.
@kpost2 Hi there, I think you’re the first Nebraskan I have seen on mayoconnect. I live in California, but grew up in Beatrice & Millard. Where are you located? Do you go to NJH for care? Sorry you are in this elite “club”!
@brigby @kpost2 Hi there, I think you’re the first Nebraskan I have seen on mayoconnect. I live in California, but grew up in Beatrice & Millard. Where are you located? Do you go to NJH for care? Sorry you are in this elite “club”!
I live in Lincoln. I have my appointments at A.A.I. Allergy,Asthma and Immunology Associates.
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bennb023
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@windwalker @bennb023 I am so glad that you are doing well on the IV treatment. Does that alao help ro keep the mac at bay?
I am not sure about keeping Mac at bay, but I am not currently treating the Mac and doing well.
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@ethanmcconkey
Hi @kpost2 I would like to share with you this article that details the clinical uses for IVIG infusions: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1809480/
That must be frustrating to feel that your pulmonologist and allergist don't listen to you. Have you felt comfortable asking them how long you will be doing this treatment?
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