Now Receiving GammaGard Bi-Weekly Infusions

I have been receiving IVIg since October. Be sure to stay hydrated. I receive premeds of Tylenol, Benadryl, and SoluMedrol. If not receiving check to see if this is possible. The only side effect I’ve had is nausea. My doctor ordered Zofran and reduced the rate of the infusion. This has helped. I’ve had a positive result to the infusions. Hope your response is simular.

I really resonated with your feelings about being diagnosed with a chronic condition and dependent on IVIG infusions for the rest of your life! Sending a sympathetic virtual hug your way. I’ve just had my 3rd month of IVIG treatment and agree with the advice on pre-treatment with Tylenol, Benadryl and my Dr. added a medication called Cyproheptadine. My first infusion was 7 hours on Day 1 and the same on Day 2. I developed a multi day migraine afterwards. For the 2nd month I got a saline IV the day before, took the new med and pre-meds and my Dr. added a migraine medication to be taken at the end of the infusion. We also cut back to 1 seven hour day infusion. I do feel much better and the treatment seems to be working! It does take up a few days of every month and is life-disruptive, but the other 28 days per month I have less fatigue, pain and feel closer to life pre-autoimmune onset. Very few people understand what IVIG is, but since I am at a chemo center to get the treatment each month they equate it with that, and are more understanding as the months go by. Trying it for 3 months may be a place to start to see if it works for you. I sure hope so, and appreciate these posts as we are all in this together.

I was diagnosed with Dermatomyositis an autoimmune disease in January of 2021. I have been getting Gammagard IVIG treatment for over two and a half years, every four weeks. Like you I was very scared, but IVIG has helped me immensely, it has keep me stable. I have, skin, lung, and muscle involvement with this disease.
The thing that helped the most when I first started IVIG, were two Private support groups on Facebook. Intravenous Immunoglobulin (IVIG) Support Group and the other one IVIG and SCIG Education and Discussion Board .
From these groups, I learned what to expect, and best way to prepare for IVIG treatment. Also if I have questions or concerns, the group is there to help, and also to support you. I have learned so much from these groups, and the support is amazing because they understand what you are dealing with.

Hydration before and after infusion is very important, as well as your infusion rate, because if your infusion rate is too high your side effects can be worse.
I also get Tylenol and Benadryl before my infusion.
Hope this helps, Good Luck to You.
Kathryn

Thank you Kathryn for the info about the Facebook groups. I have been having IVIG infusions for the past two months. I get normal premeds and also cyproheptadine before, migraine meds after. Yes, the headaches are nothing like I’ve ever experienced; blinding, ice-pick pain that last for days. The only thing that brings me back is the results I have experienced. I have not felt this “normal” in years!

What is your rate of infusion? Often people will experience side effects such as severe headaches if their infusion rate is too high. It is not the same for everyone, it’s what your body can tolerate. The down side to lower rate is that it takes longer, but worth the extra time to not have to deal with the side effects that may last for a few days after your infusion.

Sorry for the side effects you are having. I can give you a "success" story -- keeping in mind that everyone is different and reacts differently.
I am an 81 yo male who started having symptoms 35-40 years ago. No one, not even two teaching hospitals, could diagnosis my condition, even as my symptoms got gradually worse. Finally in 2019, I went to Mayo Rochester, and was given a tentative diagnosis of CIDP, and a recommendation for IVIG infusions every three weeks. I was told that if this didn't work, I would be in a wheelchair before too long.
I started with GammaGard almost five years ago, with 25g, then 30g, every three weeks -- and it has helped a great deal. I'm still on my feet, with better balance and strength, and many fewer falls. After the first year, the Dr. at Mayo said I showed moderate improvement, and he said he was now 99% certain of the CIDP diagnosis because of my response. Because it started so long ago, I will never recover, but I'm thankful that it is stabilized and not getting worse, and I get around reasonably well with a cane or trekking poles.
At the beginning, I reacted with a bad skin rash, but with prednisone, skin lotion, etc. it cleared up. The only really bad reaction I had was when I got the infusion too close to a COVID booster. Otherwise I consider myself quite fortunate -- especially in comparison with most of the others at the infusion center who are getting chemo treatment.
Some people consider immunoglobulin a "miracle" drug. I tend to agree. When it works, it can work very well -- and whatever the inconvenience, it beats the alternative.
Sorry for the long post, but I hope this may be helpful.

My regimen calls for Benadryl, Tylenol and an IV steroid prior to IVIG infusion. I was on GammaGaurd but this year insurance covering Privigen. Steroid prior to both. Does anyone else get the steroid prior to the infusion also? I would like to forgo the steroid if it isn't advised by most to do it. I have not ask Neuro about this yet. Thanks

Thank you. The infusion rate the first time was done very slowly, and I was pre-medicated. Because I am unable to tolerate the full dose of the Gamma-Gard, which is being given because I have Primary Immune Deficiency, I will have to have the IVIG twice per month. This translates into a longer period of time before I will feel any benefit from the infusions. I have checked out the Face-Book group,but I am not a fan, and I was unable to "relate" to many of the discussion threads. I get a lot of information from the IDF, which has been very helpful. The most difficult part is trying to explain this disease to anyone other than my immunologist, simply because the disease is so rare In any case, I am staying as hydrated as possible. For the second infusion they will add IV saline, which might help with the headaches. I cannot refill my migraine headache medication because the co-pay has gone up 300 percent. I am unable to tolerate the benadryl, so I will take a different antihistamine for the next infusion. I use Norco for chronic pain, but it doesn't help with the headaches.
In any case, thank you for all of your support.

Well "crap" is all I can say, as the infusion RN called earlier to confirm my infusion for tomorrow morning, and she did not get the order for the IV saline. I am on my 9th bottle of water so far today. LOL. Losing a lot of electrolytes, that is for sure. Having this disease is mostly frustrating because there are so few immunologists, 2 in my area, and trying to get a response from them is futile. In any case, I have worked up myself again in anticipation of tomorrow and at this point can only hope for the best. If I could stop getting upset each time I think about it, I would probably feel better. "Oh well." This is why I abhor "all things medical," especially because I am scheduled for an kidney scan soon and an endoscopy/colonoscopy next month to address the ulcerative colitis problem that has returned with a vengeance. Don't get me wrong, I am not hopeless, just frustrated at the lack of understanding of PI and that it was inherited. I feel "exposed" in some way because all of my neighbors still stare at me when I walk by, because of the weight loss. I suppose "there is no going back" and I just have to learn to accept that this is my journey and I will simply have to try to do my best to cope with the "fallout." At the very least, I have joined a church and have met some wonderful, nonjudgmental people, and next week I am volunteering at the local food bank, now that I have stopped being a "caregiver" to my demented friend. I have a new "purpose," and this has made all the difference in the world. Thank you again for your ongoing support. No one told me I would feel so alone following my diagnosis, and this is something I am trying to come to terms with. While the IDF has some great support groups, they are all on the telephone/Zoom, and with my hearing problem, I really do not get much out of them. However, I did meet some nice people at the conference, including a renowned immunologist who took I had dinner with after she heard me say did not want to have the treatment, and encouraged me to think of it as "gassing up the car once a month...." LOL,
Thank you again for all of your kindness and support

Nadie puede medir o juzgar cómo reacciona alguien a te un tratamiento médico o ante una enfermendad Pero, quizá sea bueno y ayude pensar que hay muha gente que ni siquiera tiene un tratamiento para si dolencia Sea por fakta de dinero o porque aún no existw uno o porque la enfermedad está en un punto de no viabilidad para tratamiento o para seguir vivo. No digo que sea un consuelo, pero si creo que tomar connsciencia de esto hace que una se "amigue" con si enfermedad y si tratamiento Mantener la vida propio y aún más la de un hijo hace que hasta a esta desagradable medicación sea en realidad una bendición si hace que sigas viva o que vivas mejor!! Hay muha gente en el mundo que no accede ni a los alimentos más básicos Yo sigo agradeciendole al cielo que mis autoinmunes ( no como la tuya) exista medicación y que yo puedo acceder a las mejores medicaciones para seguir viva La actitud ante la vida y la enfermedad puede ser la diferencia entre ser feliz aún con esta carga. Buscá qué agradecer de todo lo que te pasa Verás quehay mi ho para agradecer y eso te hará más liviano e tránsito por la enfermedad que sea. . fuerza!