Hi. I'm sorry to hear. I was diagnosed 9 years ago with CVID. I also have similar fatigue and joint pain. I get IVIG treatments every 3 weeks to help my imune system to help prevent infections. Unfortunately there no miracle drugs or cures for this. I've learned that you need to get rest when possible. Pain so far has neen maneable by taking Tylenol on a daily basis. Trying to staypositive is the best thing for you. I remind myself everyday that there are many people out there who suffer from far worst conditions and disease. If you want to ask any questions I'm always willing to share my experiences.

Thank you so much for your response. I went from an extremely active person to a big change over the last 6 months. I have decided I cannot let this affect my life everyday. I have to stay positive and thank you for reminding me of this!

I was very active as well in the past. I'll admit that I have slowed down a bit because of pain and fatigue but Im not willing to sit there and feel sorry for myself. I still do a lot of physical activities. Some days are tougher than others. I describe this condition on a daily basis as being on a roller coaster ride. Many ups and downs. Stay focused and positive and most days will be ups!
Keep smiling

If you end up on IVIG infusions or anything else you'd like to ask me or discuss I'm always willing to help and share. When you're faced with challenges like we now face, You get a different perspective on life. I've learned that talking and helping others is very important to me. Don't stress about things that aren't important

Thanks so much!!

Hi astocking . I was diagnosed a little over 6 years ago with cvid and Iva deficiency . . I also had a lot of joint pain . Ouch . Painful . I am sorry you are going through that . I was on many of the plasma treatments before finding the one that worked for me . Today I am on gammunex at the hospital every three weeks . I was previously on hyzentra which didn't work well for me . My advise would be to be proactive , and keep logs to help too and work with your drs. it will all work out . Gammunex works well for me at this time but there are newer products out as well I believe. Work with your dr who knows you best. I keep the infusion slow and hydrate well . It helps with side effects . My Pre meds are just Tylenol . I am Fatigued and fluish for a few days after but that passes . It,was kind of a roller coaster at first until my body adjusted . My joint pain has improved but it took time . I rarely complain about my joints now. Patience is key . Overall I am much better than before . It's been really worth it in the long run . All my best to you. I do not come here often but when I do,I will look for you and see how you are doing ..

Thank you so much for the reply. Yes, this will be a learning experience for me. I am anxious to get to the specialist to figure out a game plan and start feeling a little better!

I have CVID also. The type of CVID I have is called hypogammaglobulinemia (low levels of IGA, IGG, and IGM. I am on Cuvitru Sub Q every other week. Little or no side-effects and it is done at home. Learn how to self-administer after several nurse visits. The only catch is it is very expensive if not covered by your insurance company. It has given me more energy and less pain in joints.

I am glad you are feeling better. I will definitely check into self-administering once I become familiar with it. It will be hard for me to take off work every month for this type of treatment.

Astocking,

I'm glad to "meet" you, but not for the circumstances that have brought it about. I too have CVID. I started out on IVIG monthly, and about 4 months ago got switched to Hizentra subq. Taking time off is necessary if a problem we all have had to deal with. An infusion usually takes under two hours depending on the dose/flow rate so I'd definitely check into seeing who offers it in your area. There are stand alone infusion centers that have extended hours some even with weekends, so you could make it work. Good luck and let me know how you're doing.

A stocking- Everyone has similar experiences but the degree of symptoms will be different. I was diagnosed with CVID in Dec 2016 at age 68. It took 2 months to get insurance approval and I have had 8 monthly infusions. For me fatigue/exhaustion was the greatest symptom. In the beginning i was sleeping 16-18 hours a day. Slowly that improved until I was napping only a couple of days a week for 2-3 hours. My energy level improved but I had to pace myself. Last week the fatigue hit hard again. Yesterday I spent 3-4 hours working on the lawn and became overwhelmed by exhaustion and slept 5 hours. Today it's 1545 and I'm still in my PJ's. I've had 3 naps and am beginning to feel my energy level increasing. I called the immunologist and she said 'Yeah, that can happen'. For me it's one foot in front of the other. What do I do? I see a therapist. I see a hematologist every 3-4 months to have my protein levels checked in case I convert to multiple myeloma. I cherish my family. I communicate with my wife. I accept my bad days as best I can. And #1 I ride my Harley every bloody chance I can.

Thank you both for sharing your experiences. I am going to see a specialist on Oct. 4th and praying for some answers

Hello! I am sorry to hear about your diagnosis and I wanted to share some insight from my experience with CVID. I see that it has previously been mentioned but being positive is definitely the most important part of treatment. When I was first diagnosed with CVID in 2015(I am 24 now) I was just barely trying to get through college and struggling to keep up with hospital stays and illness but now I am in graduate school so be strong and you can do it! I am not sure of your levels but just to give you an idea I will share mine without therapy. IgG-200 IgA-19 IgM-45 with these levels and a trip to the mayo clinic I was put on IVIG, my first brand was previgen which I received at the hospital and I do not recommend. My next treatment was Gammunex C which I had an at home nurse administer, this brand worked much better. Recently I have been switched from IVIG to Sub Q due to vein issues and side effects from high dose once a month. Now I am on Hyzentra 15 grams once a week which is difficult but side effects are much less severe. I hope all this medical talk does not scare you but maybe you will better understand the doctor's recommendations and will be able to ask questions about specific brands of immunoglobulin and ways of receiving treatment.Hopefully all goes well with your appointment!

Thanks so much. I go to my first appt 10/24 and I am anxious to get some answers. I am so happy you have had some success. Best of luck!