Now Receiving GammaGard Bi-Weekly Infusions

Muchas gracias por tu respuesta. Tienes razón en que muchos no tienen acceso a los mismos medicamentos y tratamientos que tenemos en nuestro país. Acepto mi enfermedad, pero a un gran costo. Si tener IP fuera lo único con lo que tuviera que lidiar, podría sentirme mucho mejor con mi situación. En cualquier caso, soy impotente en términos de cambiar el diagnóstico, y he aceptado que mi enfermedad es más o menos una especie de regalo, si eso tiene sentido. Sin embargo, recibir infusiones quincenales, aunque posiblemente sea beneficioso, no se siente como un "regalo", por lo que solo voy a intentar esto durante unas pocas semanas. He tenido más suerte que muchas personas que tienen IP, y creo que si sigo el mismo camino que tenía antes de mi diagnóstico, estaré bien. ¡Gracias por tomarte el tiempo para responder a mi publicación!

I have been receiving IVIG for the last 13 years for Common Variable Immune Deficiency. My infusions are every three weeks. I am 70.
I have experienced many side effects, including chills fever, body aches and extreme fatigue.
I premedicate with Zyrtec and take tylenol as well, which has really helped with the side effects. Being will hydrated is a must.
My infusion nurses are amazing! We have finally settled on starting the infusion slow and gradually increase. It takes 3 to 4 hours for each infusion.
I also take a nap when I get home on infusion days. I don't schedule anything else for infusion day. I call it my lost day! I feel back to normal by the next day.
While it is a life long treatment,
I am grateful, as it keeps me out of the hospital and I experience fewer illnesses that require antibiotics.
Be kind to yourself, enjoy the little things and avoid the "joy suckers" !
All the best to you- take care!
Also, a good resource is MyIG Source. Check them out--they are amazing!

@frances007 Hi, Fran, I think I lost track of you! I would ask how you’re doing but I can read that things still aren’t great. Have you always had primary immune deficiency? I’m doing pretty well except PT really wears me out!
Take care and I hope all s going well in your life! Becky

Frances, I too get IVIG infusions. It was every 3 weeks but that last week was bruised so I am changing to every 2 weeks. I have CIDP, lupus, RA, immune deficiency which all benefit from IVIG. I have terrible veins and really dreaded it at the beginning but have a great nurse who gets the IV in each time. My infusions are done at home which I like.
I always have felt if I focus on helping others, it helps me quit ruminating and being angry about my own situation. It’s great that you are making new friends at church and doing volunteer work. I hope things get easier as you go forward! You have understanding company here.

In reply to @slkanowitz Thank you! Fortunately I have good veins, and yesterday’s IVIG was much better than expected, probably because of all the water I drank the day before. And since the same RN comes out to my place each time makes it easier. I think what bothered me the most is that my immunologist didn’t explain that this treatment is required for the rest of my life. But I’m going to try it and see how I feel. I’m sorry that you are also facing many challenges, and I’m glad that you see the IVIG as a positive step towards improving your health. I suppose that if I were only dealing with PI, my issues with this treatment would provide me with an overall sense of “hope.” But, as you said, staying involved with others helps to take my mind off of myself and allows me to focus on what is really important.

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?

In reply to @becsbuddy Apparently I was born with PI, and it manifested itself when I turned 60. Imagine my surprise after being on a medical odyssey for over two years. It’s too bad there’s not a lot of awareness about this disease, and trying to explain it, even to my doctors, is next to impossible. I’m dealing with it in the best way possible, and this includes not being a “caregiver “ as much as I was before. Thanks for the kind words

In reply to @meo Thank you. Yes MyIG Source is a green support as is the IDF. I learned a lot about being immune compromised at the recent IDF conference, and they are another great source of information. If you are interested, they have recently posted all of the conference sessions on the IDF website. Very good information. I’m glad you are having a good experience with the IVIG. As I’ve said, I’m only going to try the treatment for a few months. I’ve been fortunate not to have had any serious infections, and while I’m told that IVIG is a great thing, it doesn’t come without challenges. Believe me, I avoid all kinds of people and situations that are otherwise unpleasant. Thank you for your insight

Hi. I have received IVIG for the past 18 years. I have insisted on a 110 rate and have had steroid and advil and Benedryl pretreatments. My IVIG lasts 4 hours and I have sometimes needed Maxalt for occasional migraines. Please tell your pharmacies to give you the GOOD RX price for meds. The free Good Rx app is a great one to have. My pharmacy will not only honor it, but they have their own discount program that can sometimes beat it! If you are a member at Costco, try their pharmacy price or Walmart or Walgreens.

in reply to @gbspgh309 Thank you! I've been given a script of prednisone if I want to take it prior to next week's infusion. My neurologist is supplying me with samples of Nurtec for the migraines, although I did not have much of a headache with the last infusion. That being said, I was incredibly fatigued following the recent infusion and am told that the side effects will diminish over time. While I am not convinced I will stay on the treatment long, I am giving it a try. I realize many rely upon these infusions in an effort to avoid life threatening infections; however, if I continue to feel as bad as I have been since the previous infusion, I may opt out all together. I am allergic Maxalt, and the Nurtec is the only drug that works in terms of migraines. However, I will check with Good Rx and see if my pharmacy accepts it. Thank you! Do you have some form of PI?