Replacement Addiction?

[glowing]

I hope this is not too silly a question. By the end of the second week after each three weekly ivig treatment I am almost looking forward to the next treatment. My old feelings of heavy limb-ed weariness returns, though I am in good general health. My blood tests show a good IgG level but I wonder why I'm feeling sooo lazy. I recover quickly from the actual treatment and after a day or two I feel really good but then it seems I 'burn myself out' and can hardly wait to get that good feeling back again. Is this all in my imagination?

Glowing

[john]

hi glowing,
i don't think it's a silly question at all!
i feel much the same way - i feel i actually need topping up in the week before my next infusion, it's like i'm starting to run out of fuel!! other people i have spoken to agree on the whole, and it's mainly noted by people who are on ivig and not by those on scig probably due to the big swings in our base levels.
the reason for this is possibly that we actually need the ig for more than just for fighting infection, we all know there is something going on in our joints because of lack of it, who knows where else. could be the basis of an interesting research project!
also, as long as the process of ivig is not painful or difficult to do, then that day away from all the chores and pressures, that me-day can be quite nice i find, and i quite look forward to that!
i'm glad you feel well, if you come across an antidote to that lazy feeling, let me know please!
take care - john

[willo]

This is really interesting. I told my consultant that I look forward to my sub-cut infusion, because it puts me in a better frame of mind for a couple of days. He said there is nothing in it that would elevate my mood so it must be a placebo. I didn't mention it again.

To a lesser degree than the cycle associated with iv I have a weekly up and down, tired less tired cycle and still look forward to the infusion.

As you say we don't really know all about Igs.

[liz2mac]

Hi all,
I infuse IViG weekly, which is unusual, but since I am self sufficient and it only takes about an hour out of a day it suits me. I don't get the let down between infusions. Whilst the recommended levels may keep us well, personal experience shows that I need to have levels much higher than recommeneded to keep my infections at bay. We are, of course, only replacing one Ig, when most of us are also deficient in IgA etc as well. So the IgG we are given is trying to do the work of more than one type of immunoglobulin. I think that this may well have somthing to do with the need we feel for "top ups"
Liz

[mali42]

Hi Glowing
It's definitely not a placebo in my case, I don't look forward to infusion days but my body nearly always tells me I am ready for it.
Malcolm

[slf]

I always dreaded my IVIG because the effects it has on me,and because of that,I asked that the dose be reduced as i felt my body was rejecting it in some way.Instead of reducing I am receiving the same dose but at 4 weekly intervals instead of 3.
Now I do look forward to,and feel the need for it,I actually feel rather silly to have made the suggestion as I suffered my first chest infection for ages,now I feel a little exposed. So clearly I don't think its addictive
Steve

[gilliem]

The bad old days when I used to feel in need of a top-up was exactly the opposite to you, Steve. My levels crashed so far by week 3 that I've been on fortnightly infusion ever since!
I'm with Liz on the need to have higher trough levels than the accepted, recommended norm. For me to be functionally well, my levels need to be 9-13,
Best wishes,
Gillie.

[slf]

it's very wierd you know,I have just received a letter from my immunologist,telling me yhat in the bloods they took earlier this month(remembering I am on 4 weekly now) are all good in fact Igg trough was 7.4 which I think is up. My dose a quarter down.
Last month I did have a nasty infection,but i think this was only in my throat and mouth not chest,that's Iga is'nt it.
Now I begin to wonder if in my case I would be better off without IVIG altogether. i would be very interested in all comments and advice.
My condition appears to contradict wisdom.Thats me ok!
Steve

[mali42]

Hi Steve
That flashes across my mind now and again and the thought of no being on ivig sounds so appealing but there's always a but I then remember what it was like before with constant colds sinus & chest infections cronic fatigue etc,
its strange how your trough levels have gone up but will it be that level next month and only over a period of time you will know your true trough levels, if your only doing ivig every 4 weeks I take it you do make some igg.
My break over back to the garden and enjoy this sun.
Malcolm

[glowing]

When I had my three weekly ivig two weeks ago I had bad conjunctivitis in both eyes and was using a second tube of eye drops. I hoped the ivig might help and the redness improved greatly for a few days. Today it has returned with a vengence so I will have to get more treatment from my GP. I was under the impression that ivig gave protection from the lungs upwards. Can someone please explain what might be the cause of infected eyes. Glowing

[john]

hi steve,
one swallow doesn't make a summer, and one set of good results is probably not the sign of a miraculous change in your health!!
i remember asking my immo if i should maybe not be having ivig as it didn't seem to be working. he was absolutely adamant that i would be far worse without out it, he said i would probably have something like meningitis within a few months!! so i stuck it out!! that was 20 odd years ago!!
i have never heard of anyone coming off their infusions yet, i'm afraid.
the treatment is so eye-wateringly expensive that it is never prescribed lightly, so i wouldn't get your hopes up, even though life without the regular infusions does seem wonderful. also as malcolm says, remember what life was like before!!
my trough levels are targeted at 11, and they are hovering between 9 and 10, so i may be in line for an even bigger 3 weekly dose!!!
my break over too now, back to the garden for me!!
take care - john

[slf]

Mal,John
Thanks for your words of wisdom,particularly about the swallows. Being a very impetuous person,I should beware,before my diagnosis my chest specialist prescribed a short course of steroids,by the time i got home i was jumping,rushed into work next day,told them my problems were over,please give me as much work as the :'(y had,they smiled happily and obliged.....about 3 days later I was on my knees...will i ever learn?
It's just that this seems so senseless the 1 antibody i am stocking up on seems to maintain it's level without much help,3 weeks being the supposed life of IVIG treatment.
I was previously plagued with illness and infection and fatigue(not the sort of fatigue that has struck since IVIG),but then I had GPs that were ignorant of my condition and slow,often unwilling to proscribe antibiotics,additionally although I want to return to work I have no longer the pressure to work full time. So give it time and not rush it,see how things are in 3 months after another blood test and ;D or
Any thoughts
Steve

[john]

hi steve,
wise words - time will tell!!!
just a thought - 3 weeks is the HALF_LIFE of the ig they give us. that means there is still plenty of donated product in your blood after 4 weeks - you can't claim you made it all yourself!!!
your steroid story gave me a chuckle - you are an impulsive guy aren't you?
have a good one - john

[mali42]

Hi steve
Find a system that works for you, its simple in my case because I make no antibodies but they have discussed putting up my dose in the future depending on how many infections I get each winter.
I am digging a pond at the moment and could use some of those steroids because its hard work and there is a lot of heavy breathing going on.
Malcolm

[slf]

Yes Malcolm if only they could make steroids without side effects we'd all be in there digging you out Windermere with you!
I dont think I make antibodies either but seriously wonder if I use the few I have.
Next time my glands swell up like a toad and I am feeling really low perhaps i could come and sit and doze on one of your lily pads.
Steve

[mali42]

Good idea Steve but its slow progress at the moment, hospital tomor :-(