1. < Autoimmune Diseases

Now Receiving GammaGard Bi-Weekly Infusions

Posted by frances007 @frances007, Aug 9 4:43pm

I feel like I have "come home," after being gone so long. Perhaps my pride was bruised in some weird way several months ago; but just as I was feeling an impossible sense of "being alone," I remembered how supportive this platform had been to me in the past, and how I often encouraged people like myself who were suffering in many different ways. Having attending the recent IDF conference in June, I arrived home feeling an overall sense of dread, facing the reality that in fact, I have an incurable disease that can only be treated with a lifetime of IVIG infusions, something that feels "life changing" for someone like me who hates "all things medical." However, I realized that maybe I don't need to suffer alone, and perhaps there is someone on this platform who has undergone or who is undergoing this treatment, and I wonder how they are coping with the reality of having an incurable disease that has evolved into a chronic disease as a result of the treatment available. It took me an entire month to decide whether or not to try the treatment, and at this point I am only committing to trying it for a few months to see if in fact, I feel any different. I should be grateful that the pharmaceutical company is paying my $800/mo co-pay for this drug, but for whatever reason I feel an overall sense of dread. Kicking and screaming like a child might better describe how I feel, in light of the fact that my disease is so misunderstood, especially by the majority of my friends and family, who have remained more or less unsupportive of my situation. I would be grateful for any information about patient experiences while being given IVIG, as thus far my experience has been horrible. Because of my weight, I will be given half the dose twice a month, and the initial treatment brought forth the worse headaches I have ever had, but I understand this is a common side effect of the treatment that I will have to accept. Does anyone blame me for not wanting this "life saving" treatment? Thank you very much.

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slkanowitz | @slkanowitz | Aug 21 2:39pm
In reply to @suetex "I am not sure where to post this so I will let the mentors decide. Since..." + (show)
@suetex

I am not sure where to post this so I will let the mentors decide. Since I am getting IvIg every 3 weeks for my low IgG and multiple autoimmune diseases, it seemed appropriate. When I last saw my rheummy, (mid July) she remarked that since I was doing IvIg my muscle pain and weakness should not be worse. (It was.) She wants me to have a deep muscle biopses of the quadracep under a surgical setting. Luckily, I had long ago got an apt with a notable neuromuscular doc at a university hospital. My rheummy was glad to hear it was coming up next month. Sounds like she suspects a degenerative muscle disease. Any else have a deep muscle biopses and care to report on it?

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Suetex. I had a muscle biopsy of my quadriceps in 2019 at Mayo Clinic in Scottsdale. After a decade of progressive muscle weakness, pain and atrophy, it was the only test that provided an answer. I had neuromuscular toxicity from Plaquenil that I had taken for 25 years! A muscle biopsy is a valuable test when the diagnosis is uncertain or you are not responding clinically as expected. It was not bad but was uncomfortable afterwards as any surgical site does. The answer was well worth any discomfort I experienced.

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suetex | @suetex | Aug 21 3:01pm
In reply to @slkanowitz "Suetex. I had a muscle biopsy of my quadriceps in 2019 at Mayo Clinic in Scottsdale...." + (show)
@slkanowitz

Suetex. I had a muscle biopsy of my quadriceps in 2019 at Mayo Clinic in Scottsdale. After a decade of progressive muscle weakness, pain and atrophy, it was the only test that provided an answer. I had neuromuscular toxicity from Plaquenil that I had taken for 25 years! A muscle biopsy is a valuable test when the diagnosis is uncertain or you are not responding clinically as expected. It was not bad but was uncomfortable afterwards as any surgical site does. The answer was well worth any discomfort I experienced.

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Thank you so much for your reply. I had been on Plaquenil but my rheummy had me stop it when I didn't respond to the IvIg. So it probably wasn't that but I could have had a bad reaction to it. Your experience is what I needed to hear. (I case I need to "steer" the new doc.) I hope the knowledge was helpful to you and you are doing better.

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frances007 | @frances007 | Aug 22 10:18am

in reply to @gbspgh309 Primary Immune Deficiency, a genetic disorder for which there is no cure, just IVIG treatment to "prolong" life.

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frances007 | @frances007 | Aug 22 10:23am
In reply to @suetex "Thank you so much for your reply. I had been on Plaquenil but my rheummy had..." + (show)
@suetex

Thank you so much for your reply. I had been on Plaquenil but my rheummy had me stop it when I didn't respond to the IvIg. So it probably wasn't that but I could have had a bad reaction to it. Your experience is what I needed to hear. (I case I need to "steer" the new doc.) I hope the knowledge was helpful to you and you are doing better.

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in reply to @slkanowitz Yes. And to quote my immunologist, "this is an assault" on your body, and "transient muscle weakness" is one of the biggest side effects of the IVIG, which "may or may not wear off over time." To that end, I am going to try one more month of the treatment, and then I will make a decision whether or not to continue. I am too active of a person, and laying around most of the time has been difficult at best for me. This is the kind of stuff that doctors/pharmaceutical companies do not tell patients. I suppose I had to experience "it" in order to understand perhaps I do not want this "life saving" treatment.

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suetex | @suetex | Aug 22 11:07am
In reply to @frances007 "in reply to @slkanowitz Yes. And to quote my immunologist, "this is an assault" on your..." + (show)
@frances007

in reply to @slkanowitz Yes. And to quote my immunologist, "this is an assault" on your body, and "transient muscle weakness" is one of the biggest side effects of the IVIG, which "may or may not wear off over time." To that end, I am going to try one more month of the treatment, and then I will make a decision whether or not to continue. I am too active of a person, and laying around most of the time has been difficult at best for me. This is the kind of stuff that doctors/pharmaceutical companies do not tell patients. I suppose I had to experience "it" in order to understand perhaps I do not want this "life saving" treatment.

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My situation began much before I started IvIg so I doubt that the two are related. It has been keeping my various autoimmune syndromes at bay so it does seem useful to me. I'm sorry you had such a bad reaction to it. Thank you for the warning from your experience.

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levidog | @levidog | Aug 22 7:22pm

One day at a time! I have been on IVIG ( Gammagard) for 2 years. It does help a lot and the side effects are manageable. BUT, I gave Hizentra Subcutaneous a try and my world improved immensely. I love the independence it gave me, I am able to infused anywhere (vacation) and no nurses involved. Subcutaneous is just under the skin…small needles that infuse and Hizentra is dispersed thru the fat. It’s an easy procedure, I lay in bed as I’m infused, takes an hour and then go to bed for the night. No loss day of infusing. There is a “ pocket” of fluid that goes away within a day.

The main purpose of Subcutaneous Infusion is that it’s weekly…therefore you are held at a constant level…no dipping down in levels before your next infusion.

My newest discovery.

PS….always hydrate the day before and take Tylenol and a Benadryl before infusion.

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