Tired after Infusions

[john]

hi,
you know we often complain of feeling really tired after our infusions, and often the next day too?
today i infused sitting next door to a lovely pregnant lady whose baby was three days late in arriving.
this of course prompted lots of banter about which nurse had trained in midwifery, and what we would each do if the baby turned up this afternoon!
then the mum-to-be said something that really got me thinking. she said that when she infused the baby really went quiet and stopped kicking.
my thoughts are that if this happens to an unknowing baby, it's no surprise that we feel sleepy too. interesting because the professionals don't seem to want to acknowledge this effect in us when we mention it, but a baby can't be wrong can it?
just a thought from a very sleepy john.

[emsy]

You could have a point there John. Thinking about it, when I was pregnant my baby was more active when I was not active ie trying to sleep! When we are moving we are effectively rocking the baby to sleep. So while infusing, the lady would have been still so you'd expect the baby to be active, but this clearly wasn't the case for her. I did not start infusions until after my 2nd pregnancy so can't say whether this is usual or not. What I do know is that I have learnt to infuse before bedtime as I really need the rest afterwards.

[bubblemum]

That's really interesting - not made the connection between infusions and tiredness before. I will keep and eye on this with Christopher, especially with him starting secondary school in the Autumn.
Hope all is well with you John.
Rachel

[mali42]

Hi John
I never plan anything on infusion days and some are worse than others but not really bad I just feel washed out which is not surprising having all those antibodies rushing into our system.

The next day does not bother me now but it made big difference when I was working which made the day a very long one.

Malcolm

[slf]

Hi
I dont think tired is an adequat word (even when mispelt),the waves of uncontrollable exhaustion I have been experiencing,are a lot more unpleasant than that.
This by the way is not something I ever felt before my IVIG tratment started,so yes I do strongly associate IVIG with this 'fatigue' no other cause has ever really occured to me. However the benefits of general good health out weigh,this awful side effect,but it would be better if doctors would admit this link and tried to tackle the issue.
Rant over
The weather is not nice
Take care all
Steve

[liz2mac]

ok, this is a ME explanation and not a UKPIPS approved one! We don't fight infections and therefore don't feel the effects of our immune system working which is part of what we describe as "feeling ill", is that right? So when we infuse all those infection killing antibodies we are suddenly hit by an infection killing attacking force playing pacman inside us (that shows my age, anybody want to explain pacman?). We interpret that as tiredness. Does this make any sense?
Liz

[gilliem]

Sounds good to me, Liz. Bad fatigue is a side-effect that bypasses me [mostly] altho' there have been times... Luckily for me, not on a regular basis.
Best wishes,
Gillie.

[john]

hi liz,
my post was about the calming effect of ivig on an unborn baby, who would normally be at its most active when its mum is resting whilst having ivig.
i actually think that there is an effect on us caused by the fluid, or maybe the amount of fluid coming into our blood (and the baby's blood too).
i used to think my own tiredness was because i was forced into the unnatural "patient" scenario, which is very traumatising for people who are not used to our sort of hospital regime, but since talking to the mum-to-be i'm not so sure.
the baby doesn't have any conception (!!) of what is happening to it, it just feels sleepy (tired) and goes to sleep when the ivig hits its system.
i hope lizig comes in here with her take on this

[slf]

Hi Liz
Your explanation makes a certain sense,but somehow i am not convinced completely,I wonder if it's a sort of shock or trauma we go into. I have noticed that my last 2 infusions have been pumped through at what i consider a frightening speed,but during these infusions I have remained awake and conscious throughout,until a few hours later these waves of uncontollable exhaustion takeover,like I was being given anaesthetic,and continue to arrive over several days. It seems to be saying my body does'nt like this and needs to put you out of it. Sorry not very coherent,my excuse I had my infusion on thursday!
Steve

[prickles]

Caitlin gets ever so tired a few hours after her infusion, which is why we do it on a Sunday and she goes to bed early.

It doesn't help at the moment that she has yet another absess, she only had one drained three weeks ago, unfortunately this one is on her face by her ear. I think she will be in hospital within the next week for them to sort it out. I have put her tiredness down to the fact that she always has an MRSA infection somewhere, as they are not giving her any antibiotics to try and get rid of it.

Sue

[tinasparkle]

I suffer fatigue 100% of the time, so I have kept a fatigue diary for about a year, scoring my levels of fatigue out of 10 (10 being the worst). I have only been having infusions for 4 months, but I would say that my levels of fatigue worsen directly on the day and a couple of days after my infusion, going up to 9/10 or even 10/10 (the latter being when I can't even get out of bed). I think each of us have differing responses to the infusion, but it must be quite alien to our bodies to suddenly have an influx of antibodies ready to fight infection. I think we must also be affected by other medications we are prescribed - I take a shed load (strong antihistamines, Amitriptyline for pain, Azithromycin on a daily basis) - it's a lot for a body that is already immune compromised to cope with. I definitely think that it takes at least a week for my infusion to 'kick in' and strangely enough I have a regular B12 injection a week after my infusion and then I feel so much better and able to cope, be more active and function better physically and cognitively at work.

I guess as a baby is relying on it's mother's immune system whilst in the womb and during an infusion similarly it will experience a soporific effect.

Another question, I wondered whether anyone else experiences gastric problems directly after an infusion???

[beckag87]

Hi All,

I am absolutely horrific for a day or two after my infusion. I am weak, occasionally vomit but normally just feel as if I have been hit by a bus and am extremely irritable. My immunologist seems to ignore this. Becks

[barbfrombc]

I am wiped out for the rest of the day after my ivig and drag around a bit for a day or two afterwards. Then I seem to get this lovely burst of energy that gets me back on track. When I have mentioned this to my dr he just says that he hears it a lot so it doesn't surprise him. It certainly is the case with any patient I've ever spoken to. It just seems to go with the territory for many of us - but the comment about the baby is very interesting indeed.

Barb

[dianesistern]

hi all ime interested in the link with infusions and gastric problems and never noticed the link before as i have had reflux a hiatus hernia and gastritis for a while but i had my infusion on monday and on tuesday have been doubled up with gastric problems with extreme pain when i try to swallow my food today being wednesday ime still having a few probs with reflux etc. Diane

[s162216]

I get very tired after having an infusion, usually about 6 hours after it finishes I'll just start feeling like all I want to do is sleep and get into bed for 'just an hour or two' after setting several alarms. At about 22:00 I'll wake up after sleeping through all the aforementioned alarms and feel hungry which = trip to the fish and chip shop!

Although a lot do go tired after having an infusion, some go the opposite way according to the nurse at my infusion clinic and feel like their so full of energy they've got to do something with it.
The tiredness might just be the bodies natural response to immunoglobulins: think about it, 99% of people will feel tired when ill as of the result of the body having to use extra energy to fight the infection and produce a response so when the antibodies from the infusion come in this natural response could be temporally activated and as IgG is the only antibody able to cross the placenta this may also be activated in the fetus. Just to be clear this is not definitely the reason why, this is my thoughts on the matter as theres no conclusive answer at the moment but I'll have a look around.

Sam

[emma]

Yeah I agree, I'm tired most of the time just don't feel Like I Iate had enough sleep I just feel tired all the time. But after my infusions I feel tired and washed out , I also use to feel acheie afterwards but Not so much now. Forgot to mention I have goods syndrome. ALso I have recently had my thymus gland out but its Not really made any difference at the moment

[john]

hi emma,
welcome to the forum, i'm john, i'm a moderator here and i started this post!
amazingly i also have good's syndrome, and it's not often i get to say that to anyone, as we are in an incredibly rare group among the other pids!!
this week i'm just so tired it's not true. i can hardly pick up my feet to walk, and although i feel under par it's very hard to describe to anyone what is wrong!!
hopefully my infusions will pick me up when i go for them next wednesday.
if there are any questions you have about goods, let me know and i'll try to help.
take care - john

[emma]

HI john, Well I also have a vitamin d deficency but border line at the mo, But my knee, hip hurt and I'm quite stiff in the mornings but my gp checked my hip and knee and found no real problem but I feel its somethin to do with goods and my vitamin d thing.

[john]

hi emma,
you haven't said whether you're having antibody replacement therapy. i guess you are, and if so we can all identify with the aching joints syndrome, which nobody seems to know if it comes from immunodeficiency, or the therapy!
this joint pain seems to move around, i used to get it really badly in my knees, but these days it's usually ankles, wrists and fingers!!
i find compression dressings are good, and paracetamol too.
the docs call the problem "poly arthritis", and as you have found from your gp, it doesn't seem to permamently damage the joints luckily.
i also am vitamin d deficient, as are most of the other patients in my clinic. we take supplements, with or without calcium, and some get an injection (monthly), which sounds good to me.
where are you based? i am at the royal london in whitechapel, which is now my second home!!
take care - john

[emma]

Yes I'm have replaceMent treatment every 3weeks at the mo. YEs I'm based in stourbridge in the west midlands. Some days I ache more than others but don't know What causes it or weather is mixture of my goods and vitamin d thing . But my mum has fibromyagia and recently I have had pains in my neck