CVID new diagnosis

[charley]

HI there, I am newly diagnosed with CVID with levels below 0.05, which i think is pretty low and i am lucky to have not had any serious illnesses! i have just started gobulin therapy and felt ok other than kidney pains and heart palpatations at the time and then the next 2 days and night had a blinding head ache which would just not go!!
I have heard that head aches are part of the course, but just wondering if this gets better with time and more transfusions you have? Does anyone else experience this and what can you take to help them as Ibu and paras didnt touch it!

Thanks

[s162216]

Hi Charley and welcome to the forum,

Assuming thats in g/L those are pretty low levels, but its not unknown for patients to have very low levels and no serious infections (apart from once when I was a small child I had not had a serious infection before I was diagnosed 3 years ago, and I have yet to have one).

Its great that you've started having the immunoglobulin infusions as they do make a real difference. Are you on the IV or the SC (sub cut, SubQ etc) IG? Headaches are a pretty common minor side effect, but apart from taking some pain killers the only suggestion that I have would be to mention it to your immunology specialist nurse etc and ask them to turn the infusion rate down a bit if your on IV as that usually removes or reduces most minor side effects. I certainly know that if I go above 60 drops per minute (180 ml/hr) then I get really bad headaches like you describe which take a few days to go.

Its great that you've found us, and we hope to see you around,

Sam (Admin)

[glowing]

Hi Charley.

Welcome to the forum from me too.
When I started ivig the nurses were constantly encouraging us to drink and a tea lady came round frequently and at 11.30 brought a selection of sandwiches so we didn't have a chance to start feeling hungry. The nurses explained it was to help us avoid headaches. It didn't work for everyone, me included, but it was nice having the food. It is important to be well hydrated and not hungry though.

Glo

[charley]

,Hi, I'm just wondering if anyone can help, Ive now been having Iv infusion of privigen every 3 weeks. Im still getting side ffects of exhaustion like lead limbs, dizziness, and generally unable to do anything for 2 days, 4 days after infusion. Does this get better? IV had 6 months of infusions. I am wondering if I go onto subcutaneous weekly it may reduce the symptoms. Does anyone have experience of the same? Thanks so much

[s162216]

Hi charley,

It is quite common to experience tiredness after an infusion for a few hours (I certainly do and tend to have a few hours sleep shortly after an infusion), but I've not ever personally had the tiredness extend beyond that (I've had Privigen 3 weekly for the last 3 and half years). Have you discussed this with your immunologist as they may want to try switching you over to a different IgG preparation if you experience side effects like that as they are notoriously patient selective and its not unusual to have to switch over if one seems to cause problems - subcutaneous might be of help so you could suggest it to them if you feel like doing it. Another plus to SC is that its usually done at home so you can schedule it around your life much better.

Hope that things improve for you, and will await to hear what happens.

Sam

[CVIDprincess]

Hi Charley,

I was just diagnosed in July 2013 and I had my first IVIG on October 15,2013 which was Privigen as well. My dose was 40 grams and it was delivered in about 4 hours. The only pre meds I took was a Reactin and 8mg of Odansetron (I have persistent nausea).

Once I got home, I crashed hard and slept for about 16 hours. The next day I was still exhausted and had this really painful low back pain which is u usual for me. We had travelled about two hours out of town that day to attend a swim meet for my daughter and I chalked it up being in the car and sitting on a bench for hours watching my daughter compete. The next morning I was awaken by "the worst headache of my life". I am prone to migraines, but this was not like any migraine I had felt before. It felt like a knife was stabbing me in my forehead and the pain was so bad in behind my eyes that It took 7 hours before I could open them again.

I got to the emergency room about 2 hours into it and they put me on the typical migraine cocktail and fluids, but it wasn't until the second bag of saline, and I think Toradol, did I get any relief. The Dr. there suspected Aseptic Meningitis, but I declined the spinal tap to find out for sure.

I was taken off IVIG from that point and put on Hizentra which I deliver myself subcutaneously. For the first 4 months on the Hizentra I still got bad headaches and my infusion schedule was determined based on my headaches. Now after being on Hizentra for 7 months, the headaches are manageable and barely even there.

In my experience, the IVIG I received was infused way too fast. It was set at 50 for the first 15 minutes, then 80 for the next 30 mins, then 120 for the next 30 mins and then 180 for the remaining. I also was never told about the importance of hydration. If anything, I was dehydrated when I went in for my appointment. Even with the Hizentra, my headaches are correlated with how hydrated I am. I am not sure if the side effects I had with the Privigen IVIG would have subsided. I can say that mine did improve over time with the Hizentra and the subcutaneous route has a lot of advantages ie. you are infusing less much more frequently which is easier for your body to adjust to and you can control when you infuse to ensure you are well hydrated and not in the middle of a migraine. During the first 4 months of infusing Hizentra, I infused only 2 grams/10 ml at a time and did this 5 times per week to equal my dose of 40 grams per month. Now I am able to infuse 4 grams at a time and the headaches are barely present.

There is hope, it is just a matter of working with your Immunologist to find what works for your body and unfortunately this comes with a bit of trial and error. Hang in there!

Robyn

[charley]

Hi Guys, thanks so much for your response. its interesting to hear what other people experience, as i haven't heard anyone say they have had exhaution and horrific head aches. i have never expienced a head ache like it, i couldnt move my neck or eyes as like you say the pain behind then was terrible, i couldt even speak to wake my partner up to help me get pain killers! just lay there for hours in pain! not had it since to be fair, but on going slight head ache most days on and off. but its to tiredness that is getting me, i have always been a relativiely active person , but i am experiencing chronic fatigue type symtpms. i have just organised to go down the SC route next month to see if it helps.

i have some other questions if someone can help. i have got some hip problems where i have degenerative changes and i am only 28. they are thinking of doing arthroscopy and reshape the hip slightly. has anyone had surgery and do we have to do anything to reduce chances of infection. and also, i have read about the autoimmune conditions coming hand in hand sometimes with CVID. how do you get tested to see if you are the 25% of CVID sufferers with an autoimmune problem also?

thanks for the help

[s162216]

Jun 29, 2014 18:24:50 GMT charley said:

Hi Guys, thanks so much for your response. its interesting to hear what other people experience, as i haven't heard anyone say they have had exhaution and horrific head aches. i have never expienced a head ache like it, i couldnt move my neck or eyes as like you say the pain behind then was terrible, i couldt even speak to wake my partner up to help me get pain killers! just lay there for hours in pain! not had it since to be fair, but on going slight head ache most days on and off. but its to tiredness that is getting me, i have always been a relativiely active person , but i am experiencing chronic fatigue type symtpms. i have just organised to go down the SC route next month to see if it helps.

i have some other questions if someone can help. i have got some hip problems where i have degenerative changes and i am only 28. they are thinking of doing arthroscopy and reshape the hip slightly. has anyone had surgery and do we have to do anything to reduce chances of infection. and also, i have read about the autoimmune conditions coming hand in hand sometimes with CVID. how do you get tested to see if you are the 25% of CVID sufferers with an autoimmune problem also?

thanks for the help

Hi Charley,

Horrific headaches and exhaustion are quite common side effects of IVIG - I get headaches like you describe if I infuse it too fast, and I will usually feel exhausted a few hours after the infusion (most people get the exhaustion, but interestingly some go the complete opposite and feel like their too full of energy - pretty much everyone gets one extreme or the other!). If you use the "search" function on the top bar of the forum, you'll find many threads discussing about both those problems. The tiredness should wear off within a short time though, and you do get used to the infusions the more you have of them.

I had an appendicitis about 6 months ago, and they had to remove my appendix. Theres not exactly much they can do to try to prevent infection aside from standard practises, but they'll usually keep you well covered with IV antibiotics to try to prevent post op infection. I didn't get an infection related to the surgery, but may have experienced a urinary tract infection after from the catheter they had to insert afterwards when I went into acute urinary retention (about the most uncomfortable condition I have ever been in!). They were unable to find one in my urine, but I had the symptoms of a UTI so they treated me for it anyway. Make sure that your immunologist is kept in the surgery teams loop as obviously we don't represent "normal patients", and if there are any doubts then your immunologist should be consulted.

At the moment there's unfortunately no way of finding out whether you are likely to experience auto-immune type conditions. This is simply because CVID is so variable from person to person, and actually represents a series of clinically similar conditions, but at the moment they don't know the genetic mutations that differentiate them. For about 90% of cases it's unknown, and the 25% figure comes from epidemiology studies, but at the moment they've been unable to find a genetic similarity in most of those 25%.

Hope you find this helpful, and you're well,

Sam.

[charley]

Hi I have read the posts and read alot of about head aches and tiredness straight after infusion and somtimes running up to the next infusion. but I seem to get random days when i feel fine and then days or weeks with exhaustion which i cant put down to anything. they are looking into vitmain b12 and aneamia, but also coeliacs disease. has anyone else expericned these things? they have said to me that they wouldnt no if i have an auto immune condition until after all the sympomt spresent and then they just assume i have or havnt!? doesnt make sense to me!