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.
Finished the last round of antibiotics....doc says chest sounds clear but still take it easy for a bit so it doesn't come back. Talked to my SubQ nurse and she says up my 5x a week Hizentra to 7x for two weeks to get back on track and then take it back down again.
Told the nurse it was clearing but my joint pain was coming back....she says that sounds right.
Pneumonia or joint pain....pick one ?? Ok, no more pneumonia thanks.
Interesting though....guess now that my body has done fighting pneumonia it is back to fighting itself. Guess with a month of illness (my first month of SubQ too) I probably haven't made any progress...hopefully this next month will actually build things up !
Anyone else find this with joint pain ? When you are actively sick your joint issues ease up ???
*Please* kids don't bring me anything nasty home from school....
Told the nurse it was clearing but my joint pain was coming back....she says that sounds right.
Pneumonia or joint pain....pick one ?? Ok, no more pneumonia thanks.
Interesting though....guess now that my body has done fighting pneumonia it is back to fighting itself. Guess with a month of illness (my first month of SubQ too) I probably haven't made any progress...hopefully this next month will actually build things up !
Anyone else find this with joint pain ? When you are actively sick your joint issues ease up ???
*Please* kids don't bring me anything nasty home from school....
I have been lucky enough not to get an infection since I started IVIG, but one of the main problems I have as a side effect from IVIG is my joint pain flares about 20x its normal pain level for me...
Right now, I have just tried Prednisone to help with post infusion pain, and it seems to help.
But I noticed we both have auto-immune diseases, and I find it so strange that we can have no immune system, and then somehow we have immune responses that kick into overdrive essentially attacking itself...I really do not get the how's and why's of that.
But I do know my joint pain is connected to my Auto Immune issues, so somehow, IVIG triggers an auto immune response in me...I wish I could explain why your auto-immune responses seemed to have stopped while you were sick...
Glad you are feeling better with the pneumonia part, but wish your joints didn't hurt so much,
LuLu
WTF, what kind of awkward closing line is that? Somebody ought to launch a line of greeting cards for CVID folks- 'Congratulations! Your IgG reached 1021!" and then for those with dual Diagnosis "So Happy to Hear You've Been Infection Free For Three Months! Sending Warm thought and Prayers That Your Body Will Not Attack Healthy Tissue In the Days to Come!"
I actually haven't been diagnosed with an autoimmune disease. From what I have read it wouldn't surprise me if I had lupus or sjorgen's....lots of symtpoms match, scarily so.
One step at a time. My immunologist says lets get this started and go from there. Fair enough I guess...lots of symmetrical joint pain & fatigue. Man would I like to rewind about 3-4 years ago to the health I had then....
Don't concern yourself too much with the Auto-Immune stuff just yet..I only thought Auto Immune because you said your body went back to attacking itself, which is essentially what auto-immune disease does.
However, Auto Immune disease is extremely hard to DX, and many Auto Immune Diseases benefit from IVIG. For the symmetrical pain, you may want to ask your MD if Plaquenil might be a good choice for you. Plaquenil is used in practically every Auto-Immune Disease, so in the off chance you have one, you are already taking the first level of treatment, but it also is known to really help the kind of symmetrical pain you describe.
I have been on Plaquenil for almost 2 years, and the pain you describe has gone away for me. The only downside to Plaquenil is that it takes about 6 months to start working, but once it kicks in, the lack of joint pain is worth it.
"Let Us All Share In Your Joy, Congratulations on Not Being a Dual Diagnosis Patient. May you live a long and healthy life with this one disease, and only this one disease"
:) LuLu
Today is a bad morning - typing is a challenge & my right shoulder blade is in spasm....ugh. Leaning on a heating pad.
Everything just takes so much time....
I haven't had issues with side effects other than some headaches when I started and mild tenderness at the injection site - but then I am pushing fluid under my skin!
I am new to this - only in 4 weeks - I inject 8 g (10cc) 5x a week. Right now I am doing 7x for two weeks to try to finish killing off this pneumonia (talked to infusion nurse yesterday). I am on the upswing...but I've been here before ! The injections of this smaller amount only take me about 15 minutes.
The theory with smaller more frequent injections is that the IgG levels will stay more even. I've been sick the last 3 weeks so I don't expect mine to have actually changed much.
I have had 3-4 pneumonias in the last year and a half but my chief complaint has been joint pain for just over 3 years. The 5x a week might be partly due to my symptoms or it may just be the way Alberta likes to do it !
What are you doing right now - weekly ?
I am actually doing monthly iv infusions right now, but I used to do weekly sub q. My levels aren't steady enough with the monthly iv infusions, but when I used to do the weekly sub q I had a lot of side effects. I was just thinking the several times a week might keep my levels more even and be less side effects....just making sure I explore all my options. I used to have pneumonia a lot too and that has gotten better. Unfortunately, I have some autoimmune issues going on too and my levels need to be high and stay steady so the autoimmune stuff can be treated without bringing me too low. It's a delicate balance. Thank you so much for taking the time to respond.