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.
I think a LOT of new people find us here on DS when first getting diagnosed. I always try to tell people to be open minded when seeking online support because people are usually: newly diagnosed, not yet on treatment and very ill, or having a specific issue and are looking for help. RARELY do we post about our positive experiences with treatment. Maybe its because we have a lot of new people? I want people to know there is hope. Will we be normal? No. But we do find a new normal. So most of you know my sitch so plug your ears, I'll start:
Single mama, 2 cats & a dog, own my own home and work 2 jobs. I was on IVIG for 3 years, had some issues but my health DRAMATICALLY improved. I noticed a difference probably on month 4 and it was very gradual. My IGG was about 700-900 on IVIG and I was still getting sick, but couldn't complain, it was WAY better than before treatment. Now, been on subq almost 3 years, IGG last month was 1660...my arthritis is now manageable most days, brain fog & memory recall have both improved (not typical btw). I developed a very rare lung disease because of CVID but live like any normal person. I don't mask, ever, as a seasoned immuno told me the masks are worthless, after about 10 seconds they are wet from breathing and useless. I grocery shop, go to Walmart, fly all over the US, even spoke to 200 people in September. I go to my childs functions...heck, I can't think of anything I DONT do.
It takes a bit of tinkering with your dose, speed, pre-meds and advocating for yourself...but it does get better :)
Single mama, 2 cats & a dog, own my own home and work 2 jobs. I was on IVIG for 3 years, had some issues but my health DRAMATICALLY improved. I noticed a difference probably on month 4 and it was very gradual. My IGG was about 700-900 on IVIG and I was still getting sick, but couldn't complain, it was WAY better than before treatment. Now, been on subq almost 3 years, IGG last month was 1660...my arthritis is now manageable most days, brain fog & memory recall have both improved (not typical btw). I developed a very rare lung disease because of CVID but live like any normal person. I don't mask, ever, as a seasoned immuno told me the masks are worthless, after about 10 seconds they are wet from breathing and useless. I grocery shop, go to Walmart, fly all over the US, even spoke to 200 people in September. I go to my childs functions...heck, I can't think of anything I DONT do.
It takes a bit of tinkering with your dose, speed, pre-meds and advocating for yourself...but it does get better :)
We adjust to a new normal... and life resumes...
The begging is very challenging it gets better in time...Go back and read my posts from 2010...I was a mess... AND LOOK AT ME NOW!!!! hehehehehe
I am married and have two boys ages 10 and almost 13. In addition to travel, I am on the PTA, play golf, and about to start a yoga class. I have lost 50 pounds since starting treatment. I was morbidly obese now just barely obese. I am still losing weight slowly.
As I stated before, IgG has enabled me to live an adventurous life.
Glider you totally made me LOL Kelli Welli! HA!
More specifically, before I felt like I had a sinus infection all the time before and had a difficult time bending over because I felt like my head was going to explode. I can now bend over without my head feeling like its going to burst and I can breathe out of my nose. I don't remember how long it had been since I had done that. I also had went to the ENT because they thought I had lost some hearing, but after starting sub-q, the hearing returned. The "loss" was just due to me having fluid behind my ears constantly from the sinus infections and has now resolved. I also had a low grade fever of about 99.5-100 constantly. Now it comes and goes, but it is still better than it was. I also no longer have diarrhea and before I had it at least ten times a day. I also have experienced some positive changes that are not typical. Before sub-q, I could not sleep due to widespread pain, despite strong sleeping pills and adding three Benadryls to the sleeping pills. I was never really given a name for the pain, although one of my resident friends thought it was neuropathy. I am now pain free except for my wrists and they are better than they were. I sleep fine with no help from medication. I also had dangerously low blood pressure before and was on Florinef at a "very aggressive dose" as my cardiologist would say, to keep it close to normal. As I started sub-q, my blood pressure came up and I was able to completely stop the Florinef.
When I saw my immuno for the first time after I started treatment and he told me that it was the first time he really thought I didn't look sick. He said I had good color and before I was always pale. He is also optimistic about my return to the workforce and that couldn't have made me happier.
I am amazed and thankful. Sometimes I get annoyed with aspects of treatment, but it is more than worth it.
It helps to hear the positive stories and I need to remember to be here for others as I get better, as it is hard to see the light at the end of the tunnel and only those who have gone through it understand.
I do weekly SCIG treatments using Gammagard. After the first time "poking" myself, I got past the fear of doing that. Its actually pretty basic now and my infusions are fairly uneventful. Yea! I used to use benedryl and tylenol but for headaches and itchiness, but that is not a problem anymore so I don't even premed anymore. I do make sure I drink plenty of fluids and being from Colorado, that is kind of a norm around here anyway so its no big deal making sure I am well hydrated.
At about 2 months i was getting some really nice energy and believe I still have some of that but have been sick recently. I just had my first blood work done since getting started. Levels came back low, haven't talked it all over with my immune yet (we are playing phone tag right now) but he is going to "tinker with things" to work on that. We had talked before of him possibly raising my dose and maybe splitting my infusion into two weekly. I'll know more later today or tomorrow once he and I can talk.
I work full time, I am the ED of a small national nonprofit organization, I travel all over the US, most months doing about 3-4 trips. I am a full time college student, finishing up my Masters degree in Public Administration and am currently applying for working on my Doctorate.I just bought myself a bicycle because I believe I will be able to start getting more active. In that same vein, I started walking about 10 minutes a day, I know its only a little bit but up to now, I am a couch potato, to start moving again. I am trying to find a Tai Chi class I can take next month.
Life is good and getting better - Zen
Also, I was recently in the ER and the ER doc even understood CVID. I believe I am quite blessed. My team came together relatively easily. The Oncologist I've been working with for 14 years so she is not new but everyone else came about this last 6-8 months.
Loved reading the positive input..
Myself I am a grandmother of 5 wonderful and inquisitive grandchildren who are always on the the go and doing something.
Have a blood disease which was discovered in 1999, and CVID which was DX in Aug of this year. Had my first IVIG in Aug and have been getting more energy and feeling a little better each month. The pain is also subsiding. I am in the hospital a lot less. I was in the hospital at least a week each month but since being on IVIG I am making it about 7 to 8 weeks where I am now hospital free..See if I can make it six months, or a year..
I am starting to do more, and hoping more spoons arrive under the Christmas tree... Mine is more based on how tired I am or if I am in the hospital than anything else. There is little I don't do. I how ever won't go into a room filled with little kids during flu season..I draw the line there. I continue to LIVE my life..
I have my first new infusion with GG tomorrow. Nervous, but excited.
Since I had the Privigen and Hizentra,,,,,dare I say my fibro pain has been GONE. I only did those 2 infusions. I don't know if it's a fluke or what. But I have this crazy rash?!
Anyway, having no pain really, no need for a narcotic has been so awesome. But...maybe it's the cooler weather. Not sure.
Thanks for sharing that your IgG levels have gone up to 1660, I am a newbie to joining this forum, but was diagnosed with CVID 12/10 and began Gammagard subq therapy 12/12 (the delay with getting immunoglobulin therapy was due to $$$).
Now that I've been on Gammgard for a full year my numbers are up to the 880's and my doctor is wanting it to be over 1000. I still feel tired all the time, so now I am hopeful that my numbers will grow and I can once again become the energizer bunny I once was and can get out and about more than I am currently doing.
Last January, I was so sick, there were nights I was not sure if I was going to wake up in the morning and that was just from running an errand at Trader Joe's and Target. I am tired of being tired.... LOL! In October, I did my civic duty and sat in a court house for Jury Duty for 4 hours with about 200 ppl and got rewarded with a really bad flu, strep throat and staph infection on my cheek and inside my nose. And every time I blink, I feel like a new allergy or Autoimmune disease has arrived. And I want back is my almonds..... : )
May I ask your Immunoglobulin dosage? Like you, I am doing subq and my dosage is 75 grms/750ml weekly. My side effects still suck... muscle spasms in back and cramps in abdomen and legs.
A little bit about me..... I have always been active, fit, eat well and drink lots of water with my vice being wine and chocolate.... I love to travel and have been to Italy, Denmark, Sweden, Australia and have gone on 3 cruises through the Caribbean and South America... and there is nothing like driving up the CA coastline and drinking lots of wine and at the wineries....
I live in Hermosa Beach, CA, just 3 blks from having sand on my feet. It is a little beach community that is only 1.3 sq miles and is 7 miles south of LAX. It is not unusual to see Professional Volleyball Players playing during a weekday 12 mths a year since many of them are locals. I have always been strong willed and determined and career oriented. Never missed work when I had sinus infections (which I'm sure my colleagues did not appreciate) and missed one day of work when I broke my back when I fell on my outside stairs heading for work. After getting my breath, I got up and headed for work, albeit in pain, because I had a new employee starting her 1st day and I wanted to be there for her.....
I could work a 12 hour day without even needing to take a breath so when I got really sick 2/09 and just did not ever feel like I fully recovered I was now in unchartered territory and not happy! When I was laid off as a Snr. Staffing Manager working for Herbalife in 10/09, I decided it was time to see some doctors to find out why I vim and vigor fizzled. My 1st diagnoses was Asthma and then CVID.
I have been lucky that I found a job that I can work from home and love, love, love what I am doing, I am now a Career Coach sharing all of my 14 yrs of my interviewing and how to get hired secrets along with I write a rockin' resume. I love this job and love that I can work from home, but my compensation is 80% less than what I am used to making so my financial security has gone to all of my medical bills and normal monthly expenses.
Although, I am extremely extroverted and will strike up a conversation with anyone w/in 5 ft of me... I am very private about my illness(es) and only the friends I see regularly know about my condition.
Thank you everyone for sharing, this looks like a great forum with a close knit group and it is long overdue for me to be able to go to a place where others understand this rare disease that no one has ever heard of.
Like you, I do not let this define me... but, the new normal I am now, is not acceptable. Thanks for letting us know it does get better.
Denise