Question about 1st IVIG treatment

[mothergoose]

Hi I had my 1st IVIG treatment a week ago, last Monday afternoon.

I have been sick or sickly all my life, I have always caught every bug around, it has always taken me twice as long to get over bugs than every one else, I catch rare bugs and viruses, I get food poisoning easily, and secondary infections.

I was given this because I have very low IgG, IgA is bottom of normal, my Complement 3&4 are both below normal, as well as some of my other immunity markers. 
I had an MMR shot but I have no immunity to mumps, also I had the same outcome with vaccines to hepatitis, A and B.

A few years ago I caught psedomonas and Serratia Marcescens, even though they knew I had immunity problems it a more than a year B4 I was diagnosed. During this time I was sick all the time, but my symptoms did wax and wane some. After diagnoses I was treated with antibiotic for 2-3 weeks at a time. This would help improve symptoms for a couple of weeks, then return. Coughing, chocking, gagging, lots of thick phlegm. Along with this I would also catch any bugs I came in contact with. The only time I had any relief was when I was on IV antibiotics for 5 days for Septic Arthritis,from a very small split in the skin on the end of my thumb, which I was sick with for 4 months. The 5 days on IV antibiotics my symptoms from psedomonas and Serratia Marcescens improved, as soon as I went on oral antibiotics the symptoms returned, not as bad as when not on antibiotic.

By this spring of this year I finally got into see an immunologist, who did a bunch of tests, but was pretty sure before he started that I was going to need IgG replacement.

So he didn't give me a firm diagnoses name, I have been told I have Bronchiectosis (sp), a form of TB from the psedomonas infections.

When I had the treatment I was given no meds, I asked for Benadryl but was told they just turn the rate down if I have a reaction. I did have a reaction when the rate was increased, I got sudden chest pain, then had severe coughing, then couldn't breath. They quickly turned the rate down, which helped a lot, they then left the rate down for the rest of the treatment.
that evening I was tired and had diareaha, the next day more tired, slight headache, and diareaha, that night I didn't sleep, I woke at 5 am with a migraine, and still had the same symptoms of the day before. The next day day 4 I was feeling much more back to normal. By evening day 5, I started to cough and chock again. It's like the IVIG treatment had helped with the respiratory symptoms for 5 days, then they came back with a vengeance, or worse than before.

I am more short of breath, when I cough I can't breath.

So are my after effects normal ?

Does my IVIG amount need to be higher, or does it just take more treatments to notice a difference? 
Should I be taking antibiotics at the same time?  I took Benadryl all week, next time I will take it prior to treatment.


I am waiting to be taught how to do IGSC.

Still not feeling great, thanks for any suggestion, Mothergoose

[kane18]

Hi mother goose,

I have CVID and have been diagnosed a year. Like yourself, I have bronchiectasis so my problems before treatment were usually respiratory. Many years before diagnosis I had pneumonia and was hospitalised for a few weeks and my immunodeficiency was never picked up until last year.
I started on IVIG and I used to get terrible headaches at the start, debilitating so much so that I couldn't stand up. This put me off as it was (I think) my second infusion. However I persisted and my symptoms greatly improved, I no longer got these horrific headaches and my persistent cough which I had had for 20+ years had disappeared! With the IVIG I noticed a difference in my health within 2 infusions and my energy levels were improved, however I know that everyone takes to the treatment differently so please stick in there!
I am now doing Subcutaneous infusions which gives me the freedom to infuse smaller doses more frequently around my lifestyle and I feel fab.
At first it may take time for your body to adjust to the IVIG, which is normal.

Stay positive
Hannah x

[s162216]

Hi Mothergoose,

Sorry to hear that you're experiencing those effects after having the IVIG. Headaches are quite common, especially if the infusion rate is too high, and it may take a few infusions to find what rate suits you (I get terrible headaches if I go above 180 ml/hr) - being well hydrated before the infusion generally helps though. Tiredness after IVIG is very common, and I certainly usually have a few hours sleep about 6 or so hours after having it as I'll suddenly start to feel exhausted and just want to sleep; some people go the complete opposite though and feel like their so so full of energy they have to do something with it.

Most mild to moderate reactions to the IVIG can usually be greatly reduced or entirely stopped by turning down the infusion rate, and it's preferable to giving pre-medications as then the symptoms can't be "disguised" by the other medications (although practises between doctors/centres do vary - this was what my immunologist told someone who asked about pre-medications). It can take a good few infusions for your body to "adapt" to the IgG, and the diarrhoea may just simply be the IgG reacting with harmful bacteria in the digestive tract. It usually takes a good few months to see a major long term improvement with the IVIG, because it will take time to gain good levels of IgG, and obviously it will start acting on any residual harmful bacteria that are in your system

It's great that the IVIG helped for the first few days, which hopefully means that it'll be of help long term once the you've had it for a few months. Strictly speaking IVIG is not a drug in the conventional sense as it doesn't have a target, interact with receptors etc, so when the levels start to drop as the IgG is used up the effects will start to dissipate initially, until you've built up good levels (having infections, being ill etc will cause it to drop more quickly). Some people do need additional prophylactic antibiotics, but they'll see how the IgG helps first before considering giving them to you.

Just give it a few infusions and then see how you are. If you continue to have breathing problems after the infusions though (and you don't usually get problems like them), please go and see your doctor as they may be an indicator of another problem. Like Hannah says, stay positive as IgG can help tremendously, but it can take a while to get going.

If you need any help etc then we're all here,

Thanks,

Sam.

[mothergoose]

Thanks for the advice I see my GP, on Thurs he pushed four 2 years 4 this 4 me and is quite knowledgeable about it all. Today is a better day, I seem to have better days if I don't push myself, so I guess that is what I will be doing.
Good news is I have gone a week and I am not getting sick with any new bugs, or sicker with old bugs, just changing, and I am not on antibiotics.
Bad news I am to be switching it sub Q, and the lady that was to train me just quite her job from being overworked, I guess she is the only one who can do the training in our rather large area. She did say that they have decided they will have me trained by Oct. 15th. Cutting it kind of close since I go to warmer climates for the winter.
I guess it is what it is and I will wait and see every one is off summer holidays next week, so things can change.
A few side effects won't turn me off, they are nothing compared to some of the illnesses I have had over the years.
Each day is a new day, the sun could be shinning on us.
It has been a long time for Dr.'s to figure out my many medical problems.
Amount other things I have too many allergies to food and drugs to list here, most anaphylactic ones.
Most drugs react opposite to what is expect of them.
I am/have -.Hypoglycaemic, hypothyroid, Interstitial Cystitis/ painful bladder syndrome, severe urinary retention, body temp normally is 36 or 96.4, but most medical people don't believe this, if my WBC makes it into the normal range I am really sick, I get frequent UTI'S but my body doesn't make what they are looking for on the dips so I am often told it is just the IC acting up, no antibiotics for that, till I get really sick and it has spread to my kidneys, then what should have been a 10 day illness for me now has become a nightmare of pain.
Well I guess that turned into a poor me rant sorry, but NOBODY understands what I am going through. My husband was complaining about me being tired, hence my post to see if that was normal, I guess in his dream I would get a treatment be able to breath, and all would go back to normal.
Thanks for listening.
Mothergoose

[s162216]

Hi Mothergoose,

Wow you seem to be going through a lot, but keep your chin up and don't lose hope. IgG is wonderful stuff, and I have known quite a few people who have improved immeasurably since starting it. It can take a little while, but it'll be worth it in the end.

The tiredness will probably improve the more infusions that you have. I certainly felt absolutely shattered afterwards when I started a few years ago, but it doesn't affect me as much now. The low/normal temperature when having an infection is actually quite common amongst antibody deficient patients (quite a few people on here have said they experience that) for some reason, although I don't personally experience it (for some reason though my blood glucose drops rather than goes up when I'm ill [I'm a Type 1 diabetic as well] which I've never been able to find a plausible physiological reason for).

Hang in there, if you ever need any help or support then post on the forum and we'll be there.

Sam.

[mothergoose]

Thank you for your reply. I have been sick for so long, just the hope that this will work for me means I can put up with a lot of side effects and bureaucracy, before any of this can get me down, having said that I may have my moments, but for the most part I keep a positive attitude, but find it hard when those around me don't share my optimism. I see it as the home stretch now.
Thanks Mothergoose

[glowing]

Hi Mothergoose.
I'm so sorry for you with everything you've been going through. As Sam said, it takes time for the infusions to really make a difference, particularly if you've been ill for a long time before being diagnosed. I, like you, was ill almost constantly for more than ten years. I was warned before I began treatment that it could take a year or so before I really feel much better. I did improve sooner than a year but had ups and downs during that time and still do. The really good thing is that none of the infections have ever been as bad as they used to be before I had treatment. I began with ivig but have been doing subcut for over a year and much prefer it.
It is difficult for us when people don't understand but how can they when they haven't got it? I still get tired easily and my permanent lung damage won't ever allow me to move quickly. Our poor health can be frustrating for other people, but however much they don't like it, there's no comparison to how we feel living with it.
Hopefully things will improve for you very soon.

Glo

[mothergoose]

Thank for your encouraging words.
I saw my doc today, my next IVIG Treatment will be Sept. 15, this time I will be going in earlier and given a bag of IV fluids first, as I can't hydrate more by drinking, with bladder disease I already drink 2-3 Times more than most people, and I will be given a dose of Benadryl with the bag, to see if this will help with the after side effects.
I am to be taught how to do SCIG, but I feel the lady in charge of this department is using me as a pawn for leverage to get her own way. She wants a new department made for this, she doesn't want to do it any more. She does the teaching of how to do it then gets a nuts to be in charge of your case to do the ordering of supplies etc, which would be somebody where I live, not her or her staff.

So I hd my 1st treatment IVIG a week and a half ago, I have had side effects since.
Now I am sure I am getting a UTI, my temp is increasing daily, energy dropping more, burning when peeing, I should have taken a urine sample in today when I went to the Dr. But my head was somewhere else, so I will take it in tomorrow am. I have a standing order for urine tests and my urine always has to be sent out to grow cultures because of PID, or what ever I have.
So I guess we will see, but this could be why I am so tired.
Cheers Mothergoose

[s162216]

Hi mothergoose hope you're doing O.K, make sure to let us know how the next IVIG goes; I really hope that you start to get some benefit from it soon.

I hope you manage to sort out the issues with the SCIG soon as well, if you feel their messing you around then say something to the person's superior as its not right for her to use you as a pawn to further her own agenda.

Sam.

[mothergoose]

I just reread my post, it should have read nurse not nuts, problems of auto correct.

Yeah it sucks big time to be being used as a pawn in this person own agenda. She told me she was going to ask my Dr. to teach me how to do the SCIG, then called him and told him why he didn't want to do that for me.
This would just enhance her case if she can't find someone where I live to teach me, obviously she is not trying very hard too.
Hence the need for them to have a separate program in place for teaching of the SCIG and what goes with it when the PT lives in a rural area.
She did teach it till she got my file on her desk. She then decided she no longer wanted to do the teaching and setting things up for people in need. I doubt that she gets many patients, this is not done very much where I live, it has to be approved by a panel on the health board, for our district.
I assume she sees it as a job that has been added to her job, so she is doing 2 jobs. She wants it made into 2 jobs, that she is overworked and something had to be dropped. I think that since she had a new case, me she is hoping that will be the leverage she needs to make them make it 2 jobs.
Since It's summer holidays, there is nobody working with enough whiskers that I or my Dr. can complain too about what we see going on.

In the whole scheme of thing it really is not that big of a deal. I am getting it every 28 days, so it is not like I am not getting it at all, and I know that in mid Sept. there is a meeting planned around this whole issue, so I am sure they will work something out then.

It just bugs me what this lady is doing, it is not for the benefit of the PT, it is for her benefit, and she is being manipulative in the process.
I guess it takes all kinds, and I will just see how this plays out. I am sure she is overworked, I have no idea what else she has on her plate, and it probably does need to be broken down into more than one job. I am sure she is just frustrated at her superiors not listening to her and it has made her resort to this. I just don't like being in the middle.

I have always been sick with one thing or another, and I just see it as you have to jump through the hoops the Dr's want or you get no where, I see this as the same thing. So I will just bide my time and hope it all works out in the end.
Thank you for your kind words this is all so new to me.
Mothergoose