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.
I've had this weird thing going on for years - it happens in 'spells'. i can go months without a symptom...or it can hit me every day for a month. I am convinced that it is some kind of auto-immune issue related to the CVID. the doctors i've seen have not been able to identify it.
it starts out like some kind of bite. i used to think i was getting spider bites. these 'bites' usually happen on my fingers - always close to a joint - but they can also happen on my feet. the 'bites' swell and itch like mad. the skin looks 'white' in the way that a massive mosquito bite would from the swelling - like there is some kind of venom under the skin. you just can't know how itchy this is. i have to pull out the 'big gun' antihistamines and rub steroid cream on my fingers.
after a lot of scratching and rubbing - it is like some of the skin (a tiny amount) just rubs off - it's not quite like a water blister..but almost (this is why i initially thought it was some kind of bite). then, it tends to get a nasty infection and just keep swelling. i've had to go to the emergency room with it a few times where i was promptly diagnosed with MRSA. i'm a lot more careful to protect myself from infection now.
when this started to happen even on business trips - i realized this had nothing to do with spiders or any kind of bite at all. i've only recently put it together that it seems to happen near the joint of the fingers - always on the top of my hand and never palm side.
yesterday, on my right hand, the last three fingers started itching and swelling right about the first joint. today, my right index finger is so swollen around the middle knuckle that i can't bend it all the way. my whole finger is 'white' from being swollen under the surface and it is insanely itchy. there's a place on the skin that has already 'rubbed off' but i'm treating it with prescription antibiotic cream and steroid cream.
often when this is going on - i'll have a number of other crazy allergic reactions too - like day before yesterday when suddenly the backs of both hands just looked like 'gravel' with some strange rash under the surface of the skin and started itching like mad...and then the white part of my left eye swelled and made my whole eye very red and glassy.
it seems weird writing about all this because it's just been a fact of life for so long. i don't talk about it with anyone because it's just so darn weird. only recently have i put two and two together about CVID and having a propensity for auto-immune issues.
i noticed in my lab report from my immunologist a couple of months ago that my ANA titer is more than three times higher than it should be. i'm wondering if that could be related. i wondered about lupus...but everything i've read about lupus sounded different from what this is.
any of you experts out there have an idea of what this is? can a person be accurately tested for auto-immune diseases once they are doing IVIg? thanks so much for your comments observations! (and if you managed to slog through this lengthy post - thank you for that too).
i hope everyone have a great thanksgiving. i know i did. :-D
it starts out like some kind of bite. i used to think i was getting spider bites. these 'bites' usually happen on my fingers - always close to a joint - but they can also happen on my feet. the 'bites' swell and itch like mad. the skin looks 'white' in the way that a massive mosquito bite would from the swelling - like there is some kind of venom under the skin. you just can't know how itchy this is. i have to pull out the 'big gun' antihistamines and rub steroid cream on my fingers.
after a lot of scratching and rubbing - it is like some of the skin (a tiny amount) just rubs off - it's not quite like a water blister..but almost (this is why i initially thought it was some kind of bite). then, it tends to get a nasty infection and just keep swelling. i've had to go to the emergency room with it a few times where i was promptly diagnosed with MRSA. i'm a lot more careful to protect myself from infection now.
when this started to happen even on business trips - i realized this had nothing to do with spiders or any kind of bite at all. i've only recently put it together that it seems to happen near the joint of the fingers - always on the top of my hand and never palm side.
yesterday, on my right hand, the last three fingers started itching and swelling right about the first joint. today, my right index finger is so swollen around the middle knuckle that i can't bend it all the way. my whole finger is 'white' from being swollen under the surface and it is insanely itchy. there's a place on the skin that has already 'rubbed off' but i'm treating it with prescription antibiotic cream and steroid cream.
often when this is going on - i'll have a number of other crazy allergic reactions too - like day before yesterday when suddenly the backs of both hands just looked like 'gravel' with some strange rash under the surface of the skin and started itching like mad...and then the white part of my left eye swelled and made my whole eye very red and glassy.
it seems weird writing about all this because it's just been a fact of life for so long. i don't talk about it with anyone because it's just so darn weird. only recently have i put two and two together about CVID and having a propensity for auto-immune issues.
i noticed in my lab report from my immunologist a couple of months ago that my ANA titer is more than three times higher than it should be. i'm wondering if that could be related. i wondered about lupus...but everything i've read about lupus sounded different from what this is.
any of you experts out there have an idea of what this is? can a person be accurately tested for auto-immune diseases once they are doing IVIg? thanks so much for your comments observations! (and if you managed to slog through this lengthy post - thank you for that too).
i hope everyone have a great thanksgiving. i know i did. :-D
It takes months to get in with a dermatologist - chances of having a flare-up at just the right time are slim. This is the first one I've had in months. If I call them, they'll just nod and put me on the 'whack-o list'...only reason to go to ER is rapid swelling due to out of control infection. Most of the time, I can manage to avoid that now.
I don't think this is viral. It isn't contagious.
This isn't like any allergic reaction I have ever had (and I have tested allergic to more than 80 known substances at National Jewish) but this does behave like an allergic reaction: intense itching...anti-histamines help. I've got really high IgE and that tends to cause allergic reactions. The high IgE is probably compensation for super low IgG and IgA....but you'd think that since I've started IVIg that things would balance out somehow.
Two years ago, I was diagnosed with Mixed Connective Tissue Disease, which is a grab bag of auto immune illnesses related to lupus. As I understand it, CVID folks often develop this problem. Now, why no one tells us this, I have NO clue.
I am sorry you are suffering and hope you can get in with a good rheumatologist and get some effective treatment.
thanks kelfertaylor. My RA titer is normal so i haven't even thought about seeing a rhumatologist. if it is something that involves connective tissue - that would make sense. these crazy leisons near finger joints give me pause to wonder. i don't think it's scleroderma or Reynaud's (based on my google degree and looking at pictures ;-) but it's hard to know without the benefit of a medical degree. it would be a one in a million chance if the day i happened to have a flare-up coincided with the day i had an appointment with a doctor. i wish there were some blood test that could definitively point to whatever this is.
my infusion nurse told me that often when you have a high ANA titer - you'll get a few false positives first. she said that an ANA titer that high on the first test was a very strong result and that it was most ilkely indicative of lupus...but like i said - i haven't read any examples of lupus that sounded like this. *sigh*
here's my current flare-up. almost the entire length of the top of my right index finger swelled and looked like it was one big mosquito bite ('white' swelling under the surface) and itched like mad. this was a surface area of about three inches in length and the entire width of the top of the finger. there was no obvious 'central point' of the swelling. there was no 'center' ...no bump...no blister... but after an hour or two of insane scratching - some of the skin came off and then some clear liquid escaped as if there had been a blister (but there was never an area raised like a blister). it's like it just swells and itches to the point that something has to give. the ER doctor said he'd never seen anything like it - for what that is worth.
i say - near joints -- but the place where the skin finally rubbed off this time is about half way between the knuckle and the first joint. (earlier - couple of days ago - the place where the skin finally rubbed off was right on the last joint of last two fingers). the area of the site where the skin rubs off is about the size of 1/4th of a pea. it's very rare indeed for there to be more than one 'place' at a time. that's why, i think, i first thought of this as some kind of bite.
i realized my description of 'like a mosquito bite' was probably not a good one. it's like one of 'MY' mosquito bites. i am hyper-allergic to them and some bites can swell up anywhere from three to six inches in diameter. this may be another reason why i'm not putting two and two together on some of these suggestions because it may just be manifesting in an unusual way. i went to this site that shows pictures of a lot of possibilities - but couldn't find a match.
http://www.skinsight.com/searchResults/adult_Female_Hand.htm
whatever it is - it itches like hives. kelli - i did a double take about your 'Dyshidrotic Eczema' - something itchy happened in both palms earlier - and now the skin in both palms seems to be peeling.
i should start keeping a picture diary when this happens. that way, if i can't get to a doctor during a flare-up -- i could at least go in with a pictorial journal.