Hi, I have done much reading over the past 18 months on this community thread, but this is the first time I have started a discussion. I was sent to an immunologist 18 months ago with a clinical diagnosis of ISCLS. The chronic form. Since then I have been under a number of specialists for medical investigation to confirm the diagnosis.
I have had bouts for approximately 20 years and they were originally acute. Over the last 3 years it has become chronis. I appear to leak weekly (6 - 10 kg). Once or twice a year I end up very sick and leak the equivalent of a 1/3 of my body weight.
I have just been approved for IVIG treatment. I start on the 2nd & 3rd of July. I have been told that it can make you feel quite unwell for a day or so after. Is there any advice or tricks to help stop this? Or is there anything I should be expecting?
The topic of side effects from IVIG infusions has been discussed several times before, so check out https://rareshare.org/topics/1985, https://rareshare.org/topics/1964, https://rareshare.org/topics/1341, and https://rareshare.org/topics/1282, for example.
I've been on high-dose IVIG for over 10 years, been given different brands, and the infusions have never made me unwell, other than giving occasional headaches whenever I increased the infusion speed, but they went away taking Tylenol for a day or two. However, as you will see, some of our members have had issues.
Good luck with the treatment!
Arturo
Hello there... I have been on IVIG for 8 years now and gone from a monthly infusion to bi-weekly to now trying SCIG because of COVID and the side effects I have had with infusions. With my bi-weekly infusions, I would take 20mg reactine & 500 mg tylenol at treatment. As well, my specialist had prescribed a low dose of steroid to help with the side effects that was given through IV which I was slowly weening off over the years. Drinking water prior to treatment, through treatment, and after treatment was suggested and I found it very helpful. My product was infused slowly at a rate of 200 ml/hour and I also had D5W infuse with it to try and help with side effects. It seemed to help a bit, I think. For me the side effects were flu-like symptoms for a few days after treatment and then a migraine would set in for 2-3 days. But for many people on this site, they have very few side effects. I hope you are one of them. I suggest you take a good book, download your favourite music (I actually had a treatment playlist), take salty snacks, water, and have a good set of earbuds that can cancel out the noise around you if needed.
I hope this helps...Thinking of you...
Lisa
Hi,
I have been getting IVIG for a year now, every 8 weeks and felt pretty unprepared - this site has been immensely helpful. I seem to react differently every time, the first was my worst because I did not know how to prepare, and when I asked at the infusion center and my Dr, they said people don't usually have a reaction. I usually have a heavy, dull headache the afternoons of 2 day treatment, diarrhea starting during the 1st day; the 2nd day may turn into migraine, vomiting, and have had times where I felt hungover for several days. It can also be fine one day and fall back to the hangover (did I drop off my fluid intake. . . ?)
From this site, I have learned to greatly increase fluid intake 3-4 days before, during and after treatment. I pre-medicate with benadryl and tylenol 1/2 hour before treatment starts, and then at bed again, just in case. I sometimes will continue taking the tylenol for a few days to attempt to fend off headaches (I tend to wake up with them). I try to eat as simply and cleanly as possible, and get extra sleep. I see an Integrative Health Specialist and she has recommended a magnesium (chelate) supplement a week before and during, which does seem to help. I also have nausea bracelets that I put on before treatment begins. (trying to cover all my bases :-)
With all of this being said, it is worth EVERYTHING - I had a chronic leak for 10 years, ER visit every 12-18 months for dehydration, then a very different episode in February 2019 (just updated in my profile) which put me in ICU for almost a week. Since I started IVIG, no episodes and no need for a diuretic at all - I feel so much better, not constantly puffed out and bloated. My feeling is that learning to prep for/cope with/manage these side effects is a good way to take care of me and (maybe) feel a little more in control of my health.
Very best of luck to you -
Kim
Many thanks to you all for your reply's. This site and the lovely people on it are life savers.
It has been great having this information to prepare. I still feel a little unprepared as I read the reply's a little late. I have no one to blame but myself. And late is better than never :-). I have had a couple of days with good fluid intake and will take some headache relief before I start. I have a good book, salty snacks and earbuds charged :-).
Tomorrow is the big day. It is so encouraging reading how well this has worked for others. It is also very encouraging to hear that it is worth it. I suffer from intercranial pressure already due to having Arnold Chiari Malformation, so I am quite nervous about headaches and migraines.
I am hoping to return to work on the 20th of July after having the 5 months not being able to work at all. Here is hoping, I also will be able to stop the diuretics. Which at the moment are the only things that are keeping me from total incapacity and being stuck in bed or hospital?
I will be back on shortly to learn more and update you all on how it has gone.