IvIg Infusions

[robster1]

Finished my IvIg infusions this week.

After my two infusions (been doing this for almost 3 years) I’m getting more and more fatigued as time goes by. It takes me up to 3-5 days to get over. It has done a wonderful job at keeping me well. I certainly don’t want to come across as ungrateful. Any pointers on how to smooth this part of the infusion out and reduce the fatigue time? Thanks

God is so good to me.

[lbenmaor]

I'm glad this works for you. I take Alpha Lipoic Acid 60 mgs twice a day which helps with fatigue. That would help you also.

Leslie

[robster1 in reply to lbenmaor]

Thank you Ibenmaor!

I to take “ALA” but I take 300mg twice/day for neuropathy.

[lbenmaor in reply to robster1]

Sounds good.

[Girafflover in reply to lbenmaor]

I don’t know what LPGA is, explain it to me

[robster1 in reply to Girafflover]

Ladies Professional Golf Association.

[Mollyabigail in reply to Girafflover]

I had to look it up. - - IVIG is a therapy used to treat antibody deficiencies related to a variety of inflammatory and immune-mediated diseases. It’s made from antibodies called immunoglobulins, which your immune system typically makes to help fight off infections.

[CatsandCars]

I don't have any experience with IvIg, so I can't help with that aspect. You may just have to rest up. But for general fatigue, neuros commonly prescribed stimulants for fatigue. Maybe you could ask your doctor if that would be right for you?

[robster1 in reply to CatsandCars]

Thank you CatsandCars.

Stimulants and Alcohol are not my friend. I’ve been clean for 30 years and I wanna keep it that way. I praise God everyday for Him being in my life and offering me blessings like the one above. I really appreciate you!

[CatsandCars in reply to robster1]

I can definitely respect that, robster1. I can't take them myself because I'm pretty tense and they make it worse. I wish you the best. 😊

[robster1 in reply to CatsandCars]

Thank you CatsandCars

[Amore55 in reply to robster1]

Congratulations!

[robster1 in reply to Amore55]

Hey Amore55!

It been a long time. Good to hear your voice! Thank you for replying. God is so good…

[BettysMom in reply to CatsandCars]

Stimulants don't help my fatigue at all. I have ADHD so stimulants have the opposite effect on me.

[BettysMom]

What is the IVIG treating in your case?

[robster1 in reply to BettysMom]

It helps my immune system fight off sickness. It has worked great!

[BettysMom in reply to robster1]

I understand that. I'm asking if you have a specific immune disorder or deficiency and what led to your getting regular IVIG.

[robster1 in reply to BettysMom]

I was on Okrevus for four and a half years. It served me very well. Over those years and ulcerative colitis with three rounds of C-Diff plus esophagitus, gastritis and inflamed colon They determined I needed to stop Okrevus. I lost 35 lbs and had to go through a fecal transplant. My immune system was wrecked. I’ll probably be on IvIg for life.i was a sick puppy for over a year. Three ambulance rides, two ER visits, three hospital a week for each and two rehab facilities two week each. Whew! I hope I answered your question this time BettysMom.

God is so good to me.

[BettysMom in reply to robster1]

Wow! Thanks for explaining what you have gone through. I am a physician so I was really curious what could be wrong with you that would require IVIG repeatedly long term. I'm so glad you told me. I'm so sorry that your gastrointestinal system was virtually ruined. I can only imagine how much you suffered during all that. It's wonderful that the IVIG has helped you so much. It's too bad that you have to suffer now with the adverse effects of the IVIG but it is obviously better than the alternative. Do you get corticosteroids with the IVIG? How often do you get the infusions?

[robster1 in reply to BettysMom]

No steroids per my neurologist. I can’t remember why…that’s typical for me. We’ve got the IvIg down to two four hour infusions in the same week once a month. I hope I can stay in-touch. If you don’t mind me asking…what’s your area of focus?

[stepsforNeeC]

God is amazing my friend! This is your Steroid (SM) infusions you are referring to for a flare? Just rest and stay hydrated, it does take a few days to feel like yourself! My doctor gives me a taper prescription of Prednisone, but they make me feel jittery, so I just make sure my vitamin regimen is consistent and let it pass! Isiah 53:5 Blessings and Peace. NeeC

[robster1 in reply to stepsforNeeC]

Thank you NeeC for your advise. Also thank you for the scripture (one of my favorites)!

[Jer29-11]

I’ve never had ivig, but I do get a Rituximab infusion as an MS dmt. It takes me at least a week to recover each time. I get extremely fatigued after. The only thing I haven’t tried is medication to help, but nothing works except time and rest. I just take it as a sign my body needs to slow down and I plan to be out for a week after. Mine is usually only a week, although it has been longer. Maybe your body just needs the extra rest? Hope it resolves for you! Blessings 🙏🏻🩷

[robster1 in reply to Jer29-11]

Thank you Jer29-11!

[Haku949]

I hope you bounce back !

[robster1 in reply to Haku949]

Thank you Haku949!

[11tails]

Amen and Amen

[ahrogers]

I recently started taking Athletic Greens. After 2 weeks my energy level improved a lot. It is supposed to be good for gut health too, so may help your GI symptoms. I did have foul smelling gas after a week on it but it only lasted a week. Guessing it was sorting out some of the bad gut flora during that period.

[robster1 in reply to ahrogers]

Interesting…I’ll check them out ahrogers. Thanks