Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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novelidea 03/16/2016

I have been doing the subcutaneous infusions since January, 2016 following an unsuccessful attempt (asceptic meningitis) at IVIG. To avoid subq side effects, my immunologist prescribed extra prednisone and benedryl the day before each infusion, and an hour before each infusion. At first, it was 50 mg prednisone/50 mg benedryl each day. (I normally tolerate prednisone well and have been taking a fairly low dose for many years for systemic lupus.)

The problem: no side effects from the infusions, happily, but "vivid dreams" (aka sleep disturbing nightmares) from the prednisone, sometimes for three nights in a row. (This has happened before, years ago when I had to take a higher dose for a while.)

He lowered the prednisone dose to 25 mg the day before and 25 the day of the infusion. It worked last week with only minor sleep disturbances, but last night (infusions are Mondays) I got almost no sleep at all: 3--4 nightmares in a row, and I could not get back to sleep. I still work (at home, luckily, as a writer) so today will be a tough one.

I think I absolutely need the prednisone the day before, as I find I am usually feeling pretty rotten by Sunday, the day before my Monday infusion. Sometimes Saturday night, even. Last Sunday, my day-long headache and other problems eased only after I took my 25 mg dose, to my surprise.

QUESTION: Do most of you take prednisone before subq infusions to prevent side effects? How much do you take? Sleep/nightmare problems? I am trying to figure out how low I can go without triggering subq side effects, which would be worse than the nightmares.

Thanks for reading this.

jenbeth81 03/16/2016

I have just started IVIG had third infusion about a week ago. This time I got solumedrol right after. I then took 30 mg prednisone day after and repeated that the next day. It makes my heart race which I already feel after the infusion. I have had problems sleeping and am going to se dr Friday to discuss post infusion migraine, heart racing, difficult sleeping. No nightmares though.

kelli1b 03/17/2016

When I was on weekly subq I didn't take ANY premeds, ever, even though I had aseptic meningitis from IVIG. I've now transitioned to once a month subq and take 50 mgs benadryl only before my infusion. Typically, a lot of subq side effects can be mediated with proper hydration (i personally do 75 oz of water the day before, day of and day after and/or gatorade) and slowing down your infusions flow rate tubing. We all have a "magic" speed. I used F600 tubing but when I tried to go up to F900, I got migraines AFTER the infusion, so I dropped back down and migraines disappeared. What flow rate tubing are you using? The lower the number the slower the speed. Most start on F275 but they can go slower (lower number)

novelidea 03/17/2016

Thanks for replying, Jenbeth and Kelli. Jenbeth, good luck with the doctor visit Friday. Kelli, I don't know how to read the tubing flow rate! I have 3 subq needles, "flow rate adjustor" I set at 4 (in the middle). It's only 8 grams a time. There is an after-effect for about 3 hrs, raised blood pressure, headache (not migraine, treatable). I do have to lie down and get over it. Also, the day before my Monday infusions (when previous one has worn off?) is no picnic, typically. But it's the nightmares that are goofing up my good days by disturbing my sleep. But you have inspired me to ask immunologist about cutting back even more on prednisone, concentrating more on benedryl and hydration. Thanks!

kelli1b 03/17/2016

Sorry I should have clarified...are you using a freedom pump?

novelidea 03/17/2016

Yes, Kelli, a Freedom Pump. I wish I'd titled my subject "Prednisone Nightmares?" by the way, but I can't change it. I'm fine with prednisone up to a point, in fact I need it and a slightly increased dose can help during emergencies. But there seems to be a tipping point. The only way it plays out is with a little trouble getting to sleep, and then the "VIVID DREAMS." Gak.

kelli1b 03/18/2016

Ok so the flow rate tubing is the single tube that twists on at the syringe and connects to the needle set. I should come in its own bag. On the bag will be a number that starts with an F (F275, F600, F900, etc). This is what controls the speed of your infusion for the most part. Perhaps if you infused slower you could get off of the steroids :)

Kookiecat 03/20/2016

Hi. I was on Gammagard and I needed to premedicate. I was sick every single day. I switched to Hizentra and have no side effects. I no longer need to take any Meds pre or post infusion. It's worth talking to your doctor about trying another brand.

novelidea 03/20/2016

Thanks, Kookiecat~ I'm not sure I need to premedicate at all, or if so, how much. I've only done 7 subq infusions; they're weekly. My immunologist started me off at a fairly high dose of prednisone and benedryl the day before (50 mg pred) and the day-of (another 50) because I'd had such an extreme reaction to the IVIG (Gammagard) the previous November. Prednisone has since been lowered first to 25/50 and then 25/25 last week, with no Gammagard side effects other than a headache and need to lie down for a couple of hours after the subq. Manageable for me.

The only really bothersome side effect is from the prednisone (nightmares/disturbed sleep: only 1 night last week), not the Gammagard. That's what I think, anyway. So I will try lowering the prednisone this week to 15/25, and maybe even lower next week.

If the problem continues, I will certainly look into the Hizentra. Thanks!

tortoiseuk 04/17/2016

Interested to hear someone else has a different flow rate adjustor and not the F number tubes. The hospital gave me some and I thought they were great but when all used I couldn't get any more and had to go back to the F number tubes. Shame because I really liked the adjuster. VersaRate it was called.

As for premeds, I don't take anything.

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