Hi There,
You and I sound so similar. I was DX'd with Arthritis and Fibromyalgia shortly after CVID. And, just recently I had a sonogram b/c I went for 3 months without a period-I have Endomitriosis so that is very odd.
I know how discouraged I felt when it seemed I was just getting used to IVIG and then out of the blue more problems pop up.
I think Coffee and Chocolates is a great place to start feeling better!
Down the road, maybe consider Physical Therapy? It worked really well for me and helped lots with the Fibromyalgia and Arthritis. Now my Rheumatologist has me moved on to Tai Chi and swimming sort of (I have not gotten into a swim suit yet)
Take Care, LuLu

hang in there..find a good rheumo doc that is willing to work with your immune doc....with a good team of docs it is do able to walk the fine line of immune def and auto immune...i have sjogren's take 4 immune suppressors and am able to keep my igg levels around 1200-1300...i also take a daily rotating prophylactic anti b so that helps....i get more infetcions then i would like esp since my igg levels are in agood range...but with 4 immune suppressor i guess i cant complain...i take predisone, lefludamine, plaqunil, and orecnica infusion x 4 wks my igg is 60 g x 3ks wks....my sjogren's is "under control" meaning my inflammation levels have gone from 110 (norm 0-20) so i feel much better in that regard....i still struggle and doubt i could go back to work at this time...but i am much better than i was even a yr ago...so there is always hope that whatever pops up if you have a good team of docs they will be able to find a treatment tha works and makes you more comfortable....
i am proof there is hope...in 2010 when i got whooping cough from a student it took nearly a yr to be able to leave my house on my own i was retired from teaching in 1 1/2 days fro the teacher retirement board..i was really sick and we didnt think i would ever come out of it, but i did after a yr of not driving, i am back out on the rd again i have good days and bad but more good than bad now....so just remember with the right docs you can get to a better place!
good luck it isnt a death sentence maybe a lifestyle change....
my daughter with cvid is in her 3rd yr pharm school one more semester of classes a yr of rotations and she will have her doctorate so life is do able! she doent let cvid stop her...yes it is more of a challenge than others in her class have, but she doest let it stop her....

My history sounds so similar to yours pconville. I am also diagnosed with Sjogren's Syndrome as my autoimmune disorder and my medications are very similar. I also see Dr. Schroeder in Birmingham but I have to travel from a small town near Dothan, AL to get to him. I am a professor and after 40 years of working my doctors are recommending that I quit. I love my work and this decision has been very difficult. We all want so badly to function as normally as possible but sometimes CVID imposes limits that we cannot crawl over. I am proud of myself for coping with this disease for 25 years and if I have to quit at this point I feel like I have done it with some measure of grace. But there is still some part of me that would still love to have made it to the 65 year old mark to retire than to feel that I "fizzled out" due to disease at 60.

You guys are all singing my tune today:) I was a college professor for twenty odd years and had to stop teaching because of this stuff. I also have two kids who are teens and I need to be around for them. I did okay when it was just cvid, but now it seems like the sky is falling. I love the coffee and chocolate solution! I have been struggling with what they think is autoimmune pancreatitis for a while now but my doctors are NOT coordinated and do not talk to each other. I did my sub q yesterday and it seemed to aggravate things. I am trying to decide if I have to go back out to Mayo Florida for a third year in a row. I really don't have the money for the trip this year. I just cannot get the damned doctors here to work together... it is irritating.

Hi Pcon,

I have Sjogren's also...I only take Plaquenil. How does your doc measure your inflammation levels?
Plaquenil has made a big difference for me, but about 3 days before an infusion, the pain comes back.
My IGG levels just hit 710...I am having my 10th infusion next week and am just now having some minor infections.
Do your other meds also help with dry mouth and dry eyes? I have some damage to my cornea and use tons of saliva substitutes.
LuLu

Hi Guys, I was recently diagnosed with CVID and MGUS. I have Lupus, Osteoporosis, Fibromyalgia & Raynaud's. I just started Hizentra. I find it interesting that a lot of you have arthritis & CVID! I just completed my second week of dosing. It was rocky at first--lots of side effects, but getting much better now. The joint pains do increase with each dose. However, every morning I try to start the day fresh and new (with a tall cup of coffee first). I think I'm accepting the new diagnoses and realizing that I have no control over the disease, but I DO have control over my attitude towards it. I could use friends who are going through the same thing. Take care, Julie

My first diagnosis was CFS, then fibromyalgia. Years later came the CVID and celiac diagnosis. I have found that the IVIG treatments have decreased my other illness as well. I don't have as many fibro and CFS flare ups. Hang in there. I am glad that at least you were able to get diagnosed.

my inflammation levels are measured by sed rates...she also does a number of other tests to watch but the sed rates stand out for me as the one i remember that was the one she was so concerned about...with them that high she said we had to watch for brain swelling thankfully she didnt tell me that til after she got them down!

Thanks for the info pcon!
I was able to look up my SED levels online. I emailed my rheumatoligist so she can explain how she interprets the SED rates along with my other blood work.
Appreciate the help,
LuLu