ivig am I the only one

[slf]

I have'nt posted before on this being unwilling to blight more encouraging posts for newcomers.
I have been on IVIG since mid 2008 and after reading some fairly frightening posts about side effects,I was surprised how well it went,I felt no effects whatever,and for about 6 months the worst effect was losing adays pay every 3 weeks.
After that I noticed being overwhelmingly drowsy,falling asleep during the infusion,could be boredom,but no I bagan to notice this spread to the next day,was told this was perfectly normal,so it is.
As the months passed this tiredness effected more and more of the following days,I also had problems with randomattacks of fatigue making me unable to work.
The odd thing was I arrive for my infusion full of life and then descend to a much lower level,subdued,sleepy with very poor reactions,clumsy aqnd forgetful,ok sometimes I am normally!
I explained to my immunologist that I felt that this was.nt normal and she agreed,I asked that my infusion should be reduced,I had managed for so long without! She suggest a4 weekly infusion of the same quantity(35g Intratect) and to trial this for 3 months.
Just had my first 4 weekly infusion,friday 13th,but the effects are just the same. I hate to complain,the ivig has given me an jnfection free life,great,but the quality is not so good.
Has anybody had similar experience,or any ideas on what to do,the random fatigue attacks are by the way completely disabling.
Look forward to your comments
Steve

[barbfrombc]

Hi Steve .... I am sorry to hear you are struggling with this. I do experience great fatigue after my infusion but it doesn't last as long as you are experiencing. I have my infusion every second Thursday and I don't plan on being able to do much until after the weekend. By Monday though I get a nice burst of energy that carries me through until the next time. Your experience seems excessive to me. It will be interested to hear what others think. The only thing I have found that helps is walking, strangely enough. If I go for a really long walk after my infusion it seems to help the process. I have no idea why but it works for me.

I hope you get some answers and some better quality of life. IVIG should be giving you that.

Barb

[susand]

I have sub-cut infusions every week (Baxters subcuvia).
I cannot have them intravenously as I have IgA antibodies and veins that resemble threads and frequently hide!

I had a reaction to my very first sub-cut infusion - some 4 years ago - and we needed to stop it.
Following this, I had a hydrocortisone injection prior to the infusion for several weeks and the immunoglobulins were administered very slowly.

Now, I take a 10mg Ceterizine tablet 2 hours prior and the infusion - 19.2g -(12 bottles) is infused over 3 hours. I feel exhausted by evening, can barely speak - with a tongue that feels like cardboard and quite zombie like. I tend to sleep uninterrupted for 12 - 15 hours. I am unwell and tired all the following day. I often stay in bed and sleep and rest.
I surface to "nearer normality" by the afternoon of the 3rd day, although sometimes I don't feel able to drive or walk much.
I now plan for these two days and try and organise some gentle treats, work and chores if I am up to it. I take aspirin to manage the unwellness. (Aspririn, as I have bone marrow suppression with non-steroidal anti-inflammatories other than aspirin)

There have been definite losses - career, studies, friends along the way, freedom to indulge in certain activities.
However, I would not be without the infusions. My overall health HAS improved. Seems an ironic thing to say with the list of other conditions that have surfaced, but my gut sense is that the immunoglobulins have helped manage these. In fact, my oncologist (I am in remission from aggressive B-cell lymphoma diagnosed in 2009) said as much.

I don't want to discourage anyone because of my side effects.
We do all react differently. I must add that as well as the infusions I also have a regular GCSF injection (white cell growth factor) at the same time as the infusions - and just recently an EPO one as well (EPO = red cell growth factor) - which DOES give me side effects so who knows how much that influences my reactions/experience?
(I have a second one during the week, as I mentioned in another thread, and I do experience side effects each time)

The good news is that I feel better. I am getting better and better. (though I don't always feel it and often forget it). Certainly many fewer infections.
Perhaps this year will be my year - as the nurse said to me this morning!

Wishing us all ease of well-being!

[mali42]

Hi steve
I know excatly what you mean I satrt my infusion full of beans and end up feeling washed out, it does vary every time and sometimes goes into the next day, I do get times when I am extra fatigued than normal but not as severe as you,

I don't work anymore so i can pace myself when I have those bad times and take it easy,

I had the same problem when I worked and after an infection or just feeling fatigued it was very hard to get back in the swing of things and no time to properly recuperate,

I don't think there is an easy answer as we never know when the next infection is coming or how long it will last ,

Barb, thanks for the tip, I will go for a long walk after my next infusion :-)
Malcolm

[john]

hi all,
the old fatigue problem! just about everyone i speak to with PID says they experience fatigue/tiredness/lack of energy to some level.
my own story on this topic is changing as my time living on infusions goes by.
i take 50gm of grifols flebogammadif every three weeks, and have done for getting on for 18 years now - always the same product, although the concentration has recently been increased.
for years i felt very weary after the infusion and that evening needed my bed as soon as i got home.
next morning i would feel recharged and full of beans, which was just as well because i worked full time in those days!
for the past couple of years the great feeling of new energy seems to have gone, and i find myself pretty tired most of the time. i don't work now, just a day volunteering, and i really try to push myself into getting on my feet and walking/socialising/doing chores as much as i can.
my vitamin levels seem ok, although i recently gave in and started taking a "wellman" supplement, which i do think helps!
barb's right about the walking - i am in a group of ramblers and feel at my best after a good hike through the countryside, although the chat and the chilling out in the pub afterwards maybe helps!!
would i trade the fatigue for constant crippling infections? not for a moment!
take care - john

[slf]

Thanks for all your thoughts,i know the fatigue thing has been around a while,its just this prolonged post infusion fatigue,seems less common.
I do agree a good walk is great and regularly take one,almost daily,but on the day! Can barely lift my feet,oddly the following day is ok,and then i start to get the problems,no concentration,dozy etc.
John you are spot on,no i would'nt trade it for constant illness either,but i would like to get back to work though realistically at my age 63 it is very unlikely,I just feel a bit of a drain on society not contributing so well.
Again thanks so much for all the help,your kindness is an encouragement
Steve

[susand]

John, I feel heartened by the idea that the crippling fatigue that you initially experienced, did improve after time, even though it was years! I said I'd been on sub-cut for 4 years - actually it's nearer 6 I realised afterwards.
I am sorry that you are having to jump over hurdles with infections. Perhaps that would explain some of the additional fatigue you are having?
We hang on in hope that conditions will improve.
(My Haemaglobin finally UP but now platelets down - round and round in circles. So tiring.)
See you soon.
Take care,
Sue

[liz2mac]

Hi, I wonder if the exhaustion post infusing could be because the little pack men (otherwise known as antibodies) are fighting an infection that's been hanging around in your body? People who have "normal immune systems" get tired when they get ill and i'm guessing that's because their immune system is waging war on the invading bacteria. This doesn't happen for us until we get our infusions.
Yep I have exhaustion as well, crippling exhaustion. This is relatievly new in my life, prob over the last six years? My Immunologist thinks it could be due to my body trying in vain to make antibodies, making loads of B cells (pre antibodies) which can have the effect of making me exhausted, ache etc. I've also got a parathyroid gland that's going mad and I'm waiting for the op to have this out. I'm hoping that will help. Took me a long while to get this diagnosed, as PTH levels are not a test that our immunologists normally do for us. May be worth everybody with exhaustion to ask for their PTH levels to be tested as well?
Liz

[slf]

Thanks Liz that could be so very usefull
Take care
Steve