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 05/08/2016

I have been doing weekly subq infusions of Gammagard since the end of January, 2016, and I haven't had a sinus infection since December! But here's my question. I have been getting a lot of pinprick bruising (red/purple spots) on my forearms. When I looked it up online, it was mentioned as a possible "call your doctor at once" side effect. Instead, I first called the company that supplies G'gard to me, to ask. They have a 24 hour line. The woman on the other end said she had never heard of that as a side effect of the infusion product. So, two different opinions.

I finally emailed my immunologist's office early last Friday morning, as the bruising continues (along with itchy bumps that are increasing in number, though the two could be unrelated). He never got back to me. I am supposed to do my next infusion tomorrow.

So, has anyone else had the bruising? The itchy bumps? (The unresponsive immunologist?)

My November '15 IVIG ended up with asceptic meningitis, and 4 days in the hospital, so maybe I'm being over-anxious.

jenbeth81 05/08/2016

I could be a sign of bleeding. Peticheal hemorrhage is the medical term. I would call your doctors office tomorrow and speak to a RN/MD. I could just be bruising but you need to have them determine that. I had little tiny bruises that last few time which is normal on my belly where I infuse. Where do you infuse? Belly? Arms?

jenbeth81 05/08/2016

I would not infuse until you speak to him! Please, just to be safe! Don't be afraid to call the Immuno office. That is there job to help answer your questions and make sure you understand all aspects of your treatment. Any other symptoms?

novelidea 05/08/2016

Thanks, Jenbeth! I will call them in the morning. (My "thing" is that I hate calling people and/or asking for things, but that's just dumb under the circumstances.) I infuse on my belly, no problems there. Just after (headache, etc.) for some hours. And the only symptoms are the bruises (spots) that appear in clusters for no reason. That, and the itchy bumps in the same areas.

Thanks for the pep talk. I hate the idea of stopping the infusions for any reason, the results are so good, and it took me so much mental arguing (with help from this site) to agree to start, after what happened in November with a much bigger IV version of the same product.

It's confusing when the online literature says one thing but the Gammagard people say something else... Again, thanks!

jenbeth81 05/08/2016

Yes it is confusing when people say different things. But I would think of it this way your doctor knows your history and so they should be the one that is asked those types of questions. I think the gammagard people are a good resource but not the only one out there.

kelli1b 05/09/2016

I've never heard of this as a side effect either (and I've talked to a lot of people lol) Not disagreeing with Jenbeth but I wouldn't think its from subq. For sure talk to or go see a a doctor.

jenbeth81 05/09/2016

Hope your doing okay this morning!

novelidea 05/09/2016

Thanks, Jenbeth and Kelli. Kelli, on the online site "RX List," it says to call the doctor at once in case of "easy bruising... purple or red pinpoint spots under your skin," speaking of Gammagard. Kind of in the mid-reange of urgency. I suppose it is unusual, but we all are probably used to that by now!

Jenbeth, I feel confident I will connect with the doctor this morning. I called the office (no one in at the time) then texted him photos of the bruising, query about infusion today, etc. In great part thanks to you!

Even if it is a side effect, I can tolerate it if it's not dangerous. The infusion results are that good. Thanks, both of you!

jenbeth81 05/11/2016

What did you find out?

novelidea 05/11/2016

Jenbeth, after two emails from the office person (first that she'd been out last Friday so he never got the message, then, later that morning, that he'd left a message on my phone, which had not happened), I finally talked to the doctor. He said to go ahead with the infusion, as I did not have a fever along with the bruising, but to see my dermatologist. (Not easily done. Very booked up.) I was relieved, though, since the infusions are working so well. Only 5% of my worrying brain is still mulling over the online warning. (Another 5% thinks how having a chronic illness is like being stuck with a really terrible part-time job, what with the emails, texts, waiting for calls, labs, appts, on and on.) Thanks for caring; I appreciate the advice, etc.

jenbeth81 05/11/2016

Well sounds like he just thinks it's a rash. It's kind of concerning that they take so long to be back to you. Is there not anyone else that answers the phone besides the person that was off Friday? Does he have an office nurse, I would think that was who you need to speak to from now on. Don't be afraid to ask for what you need. please don't feel like your "bothering them" it's their job to address all your concerns especially if you think your having an adverse reaction. Are you feeling nervous about the possibility of something happening because of your prior reaction with IVIG? I get that totally I had to psych myself up before I put the needles in my belly this last time. I dreaded it even though it's not really that bad considering it makes me feel so much better. But for a second I was like anxious about it. Hope your infusion goes well.

novelidea 05/14/2016

Jenbeth, I think I've solved it: hives, and the little bruises have possibly been from unconscious scratching, probably during the night. (Maybe that's also the source of my 4-day headache?) I've had hives a couple of times before in my life, but the first ones I got this timestill have themare bumpier than that. Also, none of them goes away, which is what threw me off track. But my husband has informed me that there are hives on my back too, more like ordinary hives there. He even asked for an Epi-Pen lesson (he hates lessons on anything, or any kind of instructions!), even though the situation is not that bad at all at this time. I would guess the hives (if I'm right) are a reaction to something in the infusion material? Maybe the filler. That's when they started, anywaywhen I started the infusions three months ago. I am *definitely* calling someone (other than my immunologist, I guess) on Monday. Meanwhile, it's going to be a Benedryl (snoozy) weekend... Thanks for everything.

ninagalpeerdanielson 05/14/2016

I have the same thing. I bruise on my fore arms. This was happening before infusions and diagnosis. I have 10 right now. Then they itch and the I am scabbing all the time. Have you found out why?

ninagalpeerdanielson 05/14/2016

I think it is because of Vasculitis which is related to CVID. I looked up Vasculities and CVID

novelidea 05/14/2016

Nina, I think mine are hives, and the bruising may have been from scratching at them, even without knowing. But if they happened before your infusions, they wouldn't be *from* the infusions. Still, they might be connected with CVID or some autoimmune connection. Benedryl helps a little, but it makes you sleepy. I will be trying to get in to see my dermatologist soon, but it's like trying to get in to see the President... Best wishes to you! (I had vasculitis once, and it wasn't like this. It was all under the skin.)

jenbeth81 05/15/2016

Sorry to hear it may be hives, that's no fun. Is gammagard the only product you have tried? You started on IVIG and had meningitis symptoms right? I would call and ask to speak to the nurse or leave a direct message for immunologist to call you back. Call back several times if you haven't heard back!

I am working on being a better advocate for myself so I'm trying to encourage you! I have to call my immunologist tomorrow because I'm feeling awful. I think they need to increase my dosage because I felt some much better like a month ago. This was witching a few weeks of switching from IV to SQ. I am on,the same dose I was for IV so I don't think it's enough.

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