testing the norm probably wont show up a + ana for you...for many cvid'ers we don't produce what the tests are looking for...if you suspect find a good rheumo doc that knows about cvid... it is a balancing act BUT can be done!

I have cvid primary and developed sjogren's 4 yrs ago after a whooping cough bout it reeled its ugly head.

it took 2 yrs to figure it out some very frustrating days with docs, BUT my rheumo finally figured it out and learned how to treat me...

I take lefludamine like methx but smaller daily dose instead of weekly dose, prednisone, plaquenil, and iv orencia every 4 wks...I do 60 g igg every 3 wks my last igg numbers were in the 1300s I still get sick a lot due to the immune suppressors and I had to retire on disability from teaching 4 yrs ago. BUT with all my docs on the same page I am somewhat under control...my rheumo doc told me I have a very severe case of sjogren's so even with treatment she expects that my health will continue to be a struggle...my immune doc, hemo doc, and internist all are in agreement. I also have a pretty severe cvid..I have depleted t and b cells...usually with cvid you either are t or b cells depleted or low... mine are non existent. it wasn't like that in the beginning but it has been as my docs term it "progressive chronic diseases" meaning I will probably not get better but hopefully can retain what I have and not lose ground.

my docs are on the same page that I want quality of life NOT quantity.

my daughter with cvid is doing great and I have a 85 yr old 2nd cousin with cvid that does great on igg. again the variable...

you haven't been on igg long so I am rooting for you to be one that does well!

I have fibromyalgia. my rheumie is the one who ordered blood work and was looking for cvid when the medications were no working as well as he wanted. my fibro does do better in the summer, then with fall and the cold fronts, changes in weather it starts to flare. my fibro moves around but basically stays in my lower back, hips and legs ankles, though it comes up in my shoulders, arms and wrists from time to time. there is no set pattern. I also have costochondritis. they tested for lupus, Lyme and ms. those results were negative. I don't know if this is what you have but figured I'd give you a heads up on some of the things I'm experiencing .

deb

I agree with pconville that with a good rheumy it can be figured out. I have CVID, Scleroderma with lupus overlap, RA,and sjogrens. The treatment is a balancing act - IVIG to raise my immune system and arava, cimzia, steroids, etc. to suppress parts of the immune system.It took me a while to find the right team of doctors. but it can be done. Just don't be afraid like I was to switch doctors until you get the right fit for you. They work for you.

Gosh what a run around hey ? This goes up, that goes down...ugh.

When I was in university (about 22) I had hand joint pain working a labor job...saw a specialist because my GP thought I had Lupus...specialist said I didn't after seeing me. Ok, back then there was no internet (I'm 44), I had no idea what Lupus was & didn't question anything. I can't even remember why my GP at the time thought I had Lupus....blood work probably....nor do I know why the specialist (whoever he was) dismissed me. Another time, another place...maybe there was something to it all ?

Even my nurse said my 'up' IgG levels are just a snapshot from 2 weeks ago - they were where they want them but now that I feel horrible maybe they aren't up anymore. Ahhhhhhh ! I don't want to have something else - it brings in maybe meds with side effects, etc. - but I'm tired of being tired & in pain and I need to know why things are as they are.

Just can't win I guess.

how long have you been on igg?

I am just a newbie....I know, I know, I need more patience....it's only been 2 months. My pain is just about at an all time high right now (joint pain).

*breathe*

;0(

northern. those first few months are the hardest and most aggravating! the blood test, the waiting , the not knowing. we all understand. please reach out if you need to and vent all you want. we do understand where you are.

blessings
deb

It is a game called find me a doctor...once you find a good doctor who will listen to you keep them, and have them refer you to another doctor who listens to their patients..

It took 57 years for my doctors to figure things out, most thought that with the diagnosis of hemochromatosis that was all there was, and quit looking for anything else, but my hematologist, noticed the pattern of infections and tested me.. Good doctors are out there..

We are still trying to figure out how to treat it was just DX a little over four months ago. I take Gamunex every 4 weeks and vancomycin 250 4 times a day.. I have a horrible infection that comes back every time I go off of the vanco & I almost die...Happened 6 times in the last 18 months along with pneumonia twice, once I almost didn't make it out from the hospital from the pneumonia because I wasn't responding to the antibiotics, thats when they started the IVIG...because my tests came back positive for the CVID..

Best wishes & things will get better..
Cheryl

Just a note on the joint pain. The Drs thought over and over I had Lupus but always turned out nope.

I just figured the joint pain was due to the Cvid. I started taking calcium chews with Vitamin D. My joint pain has gotten sooo much better. My calcium and D was good as far as I knew. So IM not sure how they worked but might be worth a shot.

Some people sware and I mean sware by Glucosamine Chondroitin. I met a lady who told me it helped her so much she would never go off of it. She said it may such a huge difference in her life. I bought some but have never used it. Good luck.. I feel your joint pain suffering. Makes it hard to do any thing normal. Makes me super slow because everything hurts and IM only 40 but feel 80 most of the time.

lots of immune def and auto imme are vit d def so your theory holds truth... my docs check mine frequently and adjust my vit d intake accordingly.

ask your doc to check your levels..i have also had problems with my potassium.

my mom with RA has vit d def
my aunt with lupus has vit d and potassium def
I have low levels of both at times I have been taking vit d supplements for several yrs.

I was suspected of having lupus throughout my life and my daughter was also...finally dx with cvid both of us...and I have also dx of sjogren's we both have achiness and joint issues so not sure if it is the cvid or auto immune related...since my daughter has it and dx is cvid I suspect with cvid some of us will have achiness and pain...before my dx I told my family it felt like I have the flu about 3-4 times a wk. I often with tx and optimal dosing of igg have that feeling...
for some of us the correct dosing of igg will relieve the pain and achiness for others maybe not...BUT there is hope that you will be one of the lucky ones! if after 6mths to a year of igg you still have it...I would start asking for more answers there may be other underlying conditions or your igg dose may need increasing.
BUT with treatment there is hope.

Pconn makes some excellent points...keep asking questions, read, become educated, and ask as many questions as you need to to feel you are getting all the tests you need done...Auto Immune Diseases are tricky little buggers, so a good Rheumy is worth searching for....even if it means going through 3 or 4 before you find the right one (I know, that's exhausting, but worth it.) Also, I echo pconn in getting all your Dr's on the same page..I struggle with this, not that they are not on the same page, they seem to have the same overall goal, I just can't get them to communicate that with each other LOL

Also, get your Vitamin D levels checked often...us CVIDers can have a really hard time maintaining our Vitamin D levels, and more and more research show that Vitamin D plays a bigger role in the prevention of cancer than previously thought...so, get your levels checked....I can usually tell when I am not maintaining...hair falls out, nails split, more joint pain, more fatigue (didn't know that was possible!) ...Once I get on high dose therapy for 12 weeks to bring my levels up, my hair grows in, my nails look healthy, I have more energy, and just a general feeling of well being.

Also, ask your Dr's what your electrolytes were when you get tested...a lot of times your potassium, CO2,etc..will be just out of range, not enough to alert your Dr...but if you write your #'s down, you may find that you are chronically out of normal range...this happened to me, and even though just slightly out of range, after a year of being out of range, it was determined that my chronically low CO2 was acidosis...

So keep a notebook...track your own BP, your own Vitamin levels, your own Electrolytes...we tend to see too many specialists for any one of them to pick up patterns on these basics...but you can easily do so by just taking quick notes.

Long post, my apologies!
LuLu

great points lulu...