Different infusion site = different rate of absorption

[floopyjim]

Hi,

Having been advised to rotate my SCIG infusion sites to give my stomach a rest I started using my thighs for a couple of weeks.  I put two needles into my left thigh and two into the right.  The day after I felt much more tired and headachy than when I infused into my abdomen.  It occured to me today that the area I infused into was much larger on my thighs than my abdomen so I was wondering if that increase of area would have increased the rate of absorption of immunoglobulin and caused much more of a reaction?

I'm going to go back to my abdomen the next time so will see if I feel any different.

Jim

[s162216]

Technically yes that could be a reason - with any sort of subcutaneous injection/infusion the amount you can give is limited by the volume that the subcutaneous fat at each site can hold as its being absorbed into the bloodstream. If you "overfill" them so to speak then what's being injected will leak out.

A greater volume of tissue allows more to be infused in, but as to whether it'll increase the rate of absorption I'm unsure, as it is limited by the product size, lipidty and and many other factors. When I get home I'll have a look in some of my pharmacokinetics books to give a proper answer.

Sam.

[floopyjim]

Cheers Sam, much appreciated. This could be another virus that just has a bad sense of timing, however I did feel OK with no raised temperature before the infusion.

[floopyjim]

Turns out it was a breakthrough infection - started as a sore throat, spread to my lungs - just got discharged from 3 days in hospital. I suppose it had to happen sometime - I have been infection free for three months.

[john]

Poor you Jim, these things happen and it is early days for your infusions to work their best!
Bet you're glad to be home, keep warm and get fully well soon.

[glowing]

Really sorry you've been so poorly. As John said, it's early days for your infusions. I still get infections but thankfully none of them have been as bad as they used to be, thanks to the infusions.
Hope you feel very much better now.

[floopyjim]

Thanks guys. I am feeling better than I was but for the last 3 years I haven't felt 'well' Given my rubbish lungs, tendency to get every virus going around and side effects from the meds I'm taking that are keeping me alive I still feel ill. I don't know how people cope with illness and disabilities for so long. I guess I'm just not as strong as they are. I am almost at the end of my tether. I'm so scared about losing my job due to the amount of time I have had off, scared about being a burden to my family and not being strong enough to cope. All this whilst feeling tired, emotional and pretty useless. I suppose I need to talk to someone about these fears but I don't know who.

[john]

Jim,
NOBODY copes easily with a diagnosis of chronic illness and lifelong invasive treatment, coming at a time when they've been very sick for years....you are not feeling anything we haven't all felt!
Early on in my own "PID career" I told my specialist nurse that I thought I was going crazy and couldn't cope and she got me a few sessions with a psychiatric councellor at the hospital, who came and just chatted to me in a very friendly and relaxed way, whilst I was having my IVIg. It really helped and made me realise that all my thoughts and fears were not irrational and that I was not losing it!
Your family love you and they will understand and support you through all the bad times and enjoy you when you feel good.
A job is just that, a job, and it will either be done by you or by someone else...it is important in as much as it pays you, but it won't weep or grieve if it kills you....NOTHING IS MORE IMPORTANT THAN YOUR HEALTH AND WELL-BEING!
I took early retirement when going to work finally became a liability for me, even though I loved my work...but after a while I felt well enough to to take on some voluntary stuff, which lead to working part-time in a PID Charity...something I would never ever have imagined doing in my former life!!
And don't forget Jim, you can always talk to us..out in the open on the forum of privately through personal messaging. You're not alone, we will understand exactly how you're feeling!!
Look after yourself mate - John

[glowing]

I'm so sorry you're feeling low and worried about the future. Unfortunately it's very common for people with long term conditions to become disillusioned and need help to cope. People have to go through so much before they are diagnosed and it takes time to get over the shock that we'll need treatment for life. Many, if not all, of us have issues we have to deal with as a result of suffering for years, before finally a clever doctor investigates further and sets the ball rolling to get us the help we need. It's great that we have the correct treatment for our physical health but it doesn't tend to our emotional needs. You said you need to talk to someone and that's exactly what I would suggest. I'm sure your GP will find the right person to help you cope and gradually to recognise and enjoy the positive things in your life. I hope you will go to your doctor and please keep us up to date with how you are.

Glo

[marksmom]

Jim,
My son was diagnosed as an infant with a PID when they were doing a work-up of a very severe anemia. It was completely overwhelming and devastating and hard to wrap my mind around a life-long illness requiring treatment such as IVIG (and later subQ). I really struggled with anxiety and depression and coping. I have found for me, several factors helped me eventually come to terms with it - learning as much as I can about Mark's disease, coming to grips with the fact that even the most type-A personality such as myself cannot control and eliminate every germ in the universe and so I need to ease up on myself and the pressure I put on myself to keep him healthy, and finally, time. It took time, years, to see that Mark was okay. It took time for me to gain experience in when to wait to see the doctor and when red flags were going off and it was an emergency. It also takes time for you to feel better on Ig replacement, and sometimes you may need that extra rest and it's okay not to push yourself. I also, like John & Glo, recommend talking to someone. A therapist, your doc, even opening up to your significant other or family member for support will help. Forums such as this are extremely helpful...when Mark was a baby I didn't have anything like this! You can always bounce things off us or just express how you feel. We're here to support each other and we understand. The dread of needles, the worry of the future, those pesky germs by the billions, people who cough waaayyyy too close to Mark! We get it. You are not alone in this journey.

Best wishes to you!
Rachel
Mom to Mark, 13, CVID

[floopyjim]

Thank you all so very much. It's weird, I feel OK today, going back to work on Monday. I guess the emotions run high when I'm ill. I'll talk to my GP about being able to talk to a counsellor. I can't thank you all enough - this board is a life saver.

You all need medals.

I'm going to infuse now - it's a pain in the ...er...stomach but I see it as a wonderfully positive thing. I watch farscape while the needles are in.

[glowing]

So glad to know you're feeling a bit better today. We are all pleased to be of help. Before long you too will be helping and advising new members. You'll be able to tell them you understand what they mean as you've been there.

Hope you enjoy your return to work on Monday.

We'll be interested to know how you get on when you see your GP.

Just love your dogs. What are they called?

Glo

[floopyjim]

Thanks Glo - not my dogs, just love the picture - it does remind me of my own dogs though - I have a greyhound, two whippets and a terrier - when they went out into the snow, the greyhound barely touched it and the terrier was almost buried!

Jim.

[john]

Good to hear you in a better place today Jim....you'll go up and down like a yoyo, but once you're on top of your antibody levels and more infection free, the down times will be fewer.
Try not to make the big mistake I make and take out my frustration and pain on my wife...she didn't sign up for this and it's a credit to her beautiful nature that we're still together after all these years!!!
Hope the infusions went well, I'm doing mine tomorrow morning...still don't like doing it but I DO see the benefits!!!

[floopyjim]

Cheers John. It was a very good infusion - I used your recommendation of gently touching the needle on the skin to find the least sensitive area and insert there. I was surprised what a difference that made. All four needles went in with no pain whatsoever.

[john]

Yay! That's great, who needs pain?....
Did mine this morning, no problems and the four bumps are going down already helped by a bit of gentle massaging.
Best of luck with work tomorrow by the way...don't get too close to co-workers who are coughing and sneezing...TAKE CONTROL!!!!