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.
Two years of joint issues & worsening fatigue. Neuro, 2 rheumies, and a confused GP.............until a low IgG blood test - after 3 bouts of pneumonia in less than a year...and maybe one about to start up as my chest & throat are very raw.
Just completed more bloodwork to include IgA & IgM, amoung other things.
So I guess I have a lot of questions. Because of the joint pain, I am guessing (from my reading) that I am looking at CVID as low IgG alone does not seem to include joint pain. Wow...never heard of this before & it does seem to explain things.
As to the fatigue - is this the tiredness that makes you want to just sit on the couch & do nothing...but not the type of fatigue that makes you actually want to sleep ? I don't nap well (grumpy wake up)...but sometime I don't sleep well either...night sweats....doc says early menopause at 43 (ultrasound).
So starting to worry about plasma infusions, too many antibiotics, etc. How do you cope ?!?!!??!? Referred to a rare blood disorder clinic for follow up. Advice ? Experiences ? Any input is appreciated !
Just completed more bloodwork to include IgA & IgM, amoung other things.
So I guess I have a lot of questions. Because of the joint pain, I am guessing (from my reading) that I am looking at CVID as low IgG alone does not seem to include joint pain. Wow...never heard of this before & it does seem to explain things.
As to the fatigue - is this the tiredness that makes you want to just sit on the couch & do nothing...but not the type of fatigue that makes you actually want to sleep ? I don't nap well (grumpy wake up)...but sometime I don't sleep well either...night sweats....doc says early menopause at 43 (ultrasound).
So starting to worry about plasma infusions, too many antibiotics, etc. How do you cope ?!?!!??!? Referred to a rare blood disorder clinic for follow up. Advice ? Experiences ? Any input is appreciated !
I Can really empathize with all the confusion you are going through right now. Once you get a good team of doctors, things will settle down,
Like you,I presented with horrible joint pain. I was prescribed a med that worked wonders, and with a little Physical Therapy and now a little yoga, my joints rarely hurt...so there is hope!
Regarding Infusions, antibiotics, treatments etc...try not to worry too far down the road (easier said than done). Get through your testing, make sure you like your Dr's, get a good DX, then a treatment plan can be put into place.
I mean no harm, but at this time It may not be a good idea to do too much reading on your own or online until you get an official diagnosis...lots of scary stuff that is not always accurate on the web, and it can really stress you out.
So, my advice would be to slow down a bit, take a breath, know that if you do have CVID it is very manageable.
There are some great people here,and you will find that lots of folks can identify with you...very supportive here, and you can learn so much...it's a good place to be.
Keep us up to date on your Clinic appt....LuLu :)
Typically for a valid CVID diagnosis you need low IGG (2 standard deviations below normal) low IGA and/or IGM. The final phase of testing typically involves being administered 2 protein based vaccines such as TDAP and Pneumonia then checking your blood after 3 weeks to see if you made any antibodies. Poor/no response to at least one is what they look for.
Fatigue is SUPER common. And I have fatigue just like you described. I have to take Xanax at night to actually help me sleep and boy I would pay BIG MONEY to be able to nap, seriously. I also suffer from brain fog. People wonder why I get up at 4:30am to drink coffee for an hour or more just to be able to get ready for work! Also, Poly Arthritis is a very common complaint in us (meaning arthritis in 5 or more places). I do not have RA (autoimmune disease).
Infusions, whether it be IVIG or subq, can be life changing for most. They typically take 6 months to a year to see the full benefit but the dosing can take some tinkering.
About reading about the disease on the internet - well I think that depends on what type of person you are. It can be extremely overwhelming and even frightening honestly. I personally have read everything I can get my hands on and feel it is so important to be your own BEST advocate because the docs out there assume they know what / how to treat us because they spent 5 minutes on it in med school lol. Typically NOT the case. I also do not believe I am going to "get" everything it lists online. Many suffer from gut issues, I do not, never have, for example. It is possible to live a relatively normal life once on treatment. Will the pain and fatigue go away? Probably not completely. Can it be managed? With optimal treatment and good docs on your team, I believe in many cases it can.
It may be helpful to contact the Immune Deficiency Foundation and ask to be put in touch with a Peer Support Volunteer, someone like you that you can talk to on the phone. www.primaryimmune.org They also have a ton of materials they can send you.
At the moment I am travelling with my family for spring break. My doc gave a me an antibiotic prescription to take with me just in case. Well, I started them yesterday. The glands under my chin are on fire - sore throat, chest...tired. Joints are a mess - I find elevation changes - most notably decreases in elevation - are very painful for my joints. It doesn't help that I started out in pain before we even left home - we have driven through 2 mountain passes with lots of weather variation. Ouch ! Tylenol & ibuprofen do nothing.
Anyway...the journey continues (in more ways than one!). For two years I have been looking for answers....think I am getting closer.