Sub-cut 3 weekly ?

[mali42]

Hi all

I was told if i wanted i could change over to sub-cut but i said i'm happy doing ivig because its once every 3 weeks so i dont have to think about it much, i was told i could do sub-cut once every 3 weeks but how long would that take?

I always thought sub-cut was weekly.

They also said they only train people on sub-cut now.

Is there anyone who does sub-cut every 2 or 3 weeks ?


Malcolm

[s162216]

mali42 I've never heard of it being done ever 3 weeks - the actual amount that you would have to infuse would be excessive, and you would have to use quite a few sites as obviously the subcutaneous tissue at each site can only "hold" so much whilst it's being absorbed (and obviously if the tissue can't take any more the product will leak out). I have heard of some people who have smaller doses doing it every two weeks, but definitely never three before.

Perhaps the person was confused with IV (that's the only reason I could think of)?

Sam

[crocker]

I have heard of a new sub cut product that spreads around a bigger area so you can infuse more and it woukld only be required every 2 weeks. Don't hold me to this as it was past in comment that this might be suitable for my son but it is only licenced for adult use yet.



Lorraine

[marie]

Formerly I went to the hospital every 3 weeks for my IVIG infusion. Then a nurse came to my home. Now I do subQ once a week at home. The liquid amount is about 80 ML which infuses through 6 tiny needles. It takes 2 hours and a few minutes to set it up and prime the tubing- maybe 5 minutes. I have never had any problems with home infusion. That amount of liquid makes a slight bump maybe 2 in. in diameter which is gone by the next day.
Hospital infusion took 6-8 hours. Nurse infusing took 5 hours. I prefer home subQ!
The medication is probably more concentrated than an IV. My medication is Hizentra. I read or sew or watch television during the infusion.
A really great side effect of this is that I no longer have the ups and downs from waiting 3 weeks between infusions!
I live in Illinois, USA.
Best regards to all! Marie

[mali42]

Hi all
The nurse told me I can learn to do sub-cut if for whatever reason IE veins become a problem or my wife has had enough of sticking me with the needle and needs a rest ( she loves it really) and I replied I'm happy doing ivig because I only have to think about it every 3 weeks and that's when she said I could do sub-cut every 2 or 3 weekly which surprised me.

Its always an option changing to sub-cut and maybe it will happen one day but I will stick to ivig for now.

Thanks for all your replies.

Malcolm

[supersub70]

I changed over to Sub Cut about 3 years ago. It really helped me with the time off work to visit the Hospital for 4 weekly Iv. When i started a new job it was even further away from the clinic so instead of taking a few hours out of work it was a whole day. I decided that Sub-Cut was the only way forward.

I have 40ml (about 8grms of Hizentra) over 4 sites every two weeks. It's really easy and doesn't hurt. I started on 6mm needles but changed over to 4mm because I'm a bit thin I felt there wasn't a lot of fatty tissue to aim at! On average it takes about 2 to 2.5 hrs. You do get a bit of a bump at the sites but they've completely disappeared by the morning. Like a previous poster, just set up, pop in the needles, flick the pump, sit back and relax, watch the TV and let the wife get the kettle on lol....

[s162216]

mali42 I happened to go to a PID patient event at Oxford last Saturday as part of the PID UK team, and one of the specialist nurses there did actually mention that it was now possible to have SCIG every 2 or 3 weeks due to the higher product concentrations, although it was currently better suited to smaller doses as lots of lines were needed otherwise. Apparently a 25% IgG preparation is in the process of being licensed, and when that comes on the market it should be of great help in reducing the amount that needs to be infused.

Just thought you would find that helpful,

Sam.

[mali42]

Thanks Sam,
If ever I have to go on sub-cut its good to know I won't have to do it weekly.
Malcolm

[mothergoose]

I go for SQ lessons next week. I can't wait. I live in a rural area.
Dr. Has tried sending me to 2 different places for IVIG treatment. It doesn't go well they never done it before, the first place had never worked with blood products at all, so were reading how to do everything as they went.
Also I am not a very big person and have small veins, 2 treatments ago it took 6 pokes for them to find a vein, this last time the nurse tried 4 times and then called a Dr. to put in IV.
The last 2 treatments it has taken them 2 hours to get it started from when I arrive.
My only other option for IVIG treatment is to travel 200 miles each way to a facility that will know how to do it properly, this is why they didn't bok at approving me for SQIG treatments, they are more expensive for the produce, but I can't imagine more expensive once they have to pay for me to be an out patient for a day once a month.
I like the idea of havering more control over theses types of things.
I think the SQIG will just be a much better way for me all around, plus I travel in the winter so SQIG will allow me to still travel. I live in the mountain's where we get cold winters with usually lots of snow.
Cheers to all hope you are have a nice fall we are.

[glowing]

I much prefer doing my own treatment at home. One of the downsides weekly treatment is that it makes you more aware of just how quickly the days pass by. Even so, it's well worth it to me.

Glo

[mothergoose]

Well I have drove the 200 miles, all checked in etc just waiting for the lady to come and give me my lesson on how to do Sub Q.

[s162216]

Oct 28, 2014 19:11:40 GMT mothergoose said:

Well I have drove the 200 miles, all checked in etc just waiting for the lady to come and give me my lesson on how to do Sub Q.

Wow that's a long drive! Hope the lessons go well, and you do better on SC!

Sam

[john]

The three weekly sub cut is now apparently a reality, according to my specialist nurse. It is different in respect of its concentration, 20%, and it contains a new ingredient, I think it is hyaluronic acid, which "makes more space" fot the Ig to occupy under the skin. When offered this for myself I have to say that I declined until other patients had reported back on their experiences, but three weekly sub cut infusions would be wonderful!!!

[mothergoose]

Sorry it has been so long for me to report back how things went with SQ lessons etc. lessons went well, they split my dose over 2 days so I could have lessons for 2 sessions. The lessons were fine not much new for me to learn.
After have both doses I reacted just the same as I did after having a IVIG treatment, sick in bed for 4 days, then fine. I was really worried that the SQ was not going to work for me.
I had this treatment 10 days after my last IVIG treatment.
Good news is that after the next 2 SQ treatments I had no side effects except for being tired that evening.
Maybe the 1st treatment was just too soon for me after the last IVIG treatment.
So other than having to sit still for a couple an hours a week, all is great with the SQ treatment.
Thanks Mothergoose

[s162216]

Hi mothergoose, how's the subcutaneous IG going now? It's been quite a while since we last heard from you and we'd love to know how you're doing! I hope things have got better since you started it.

Sam.

[jackiedal]

My Immunologist just told me about 3 week sub IgG.   I do not mind the weekly infusions so told him no thanks.  I do not want the lows at the end of the 3 weeks.

[glowing]

I fully understand how you feel. I too prefer weekly treatment for the same reason.

[perfectlypeg]

I started IVIG in 1998, then I switched to sub-q in 2009. I am prescribed 12G/60ML every week. But I was just killing myself doing it that much. The side effects are so severe for me that I have tried everything to no avail. But they were so severe in IVIG that I would lose consciousness during the infusions.They would even run a bag of saline in the same IV line as the serum to water it down, but nothing helped. I think I liked doing the IVIG better, but here's the deal. With IVIG I never could get my IgG levels past 600 and on the sub-q I can get them up to 900. Plus while on the IVIG I was always in the hospital and I haven't been since starting the sub-q. So that is why I stay with sub-q.

Now I play with the days and the doses. I have gone three weeks, for six months last year. But the problem for me with infusing over 180ML was that I had to do it in two shifts so it took all day. But mainly I learned that large doses of gammaglobulin kills red blood cells and thus causing anemia. I now have anemia because of trying to do too much at once last year. I thought being diagnosed with PID was hard, getting treatment for anemia is even harder.

But this is also what I've learned in my situation. The side effects are not dose dependent. If I do just 4G or 24G I still suffer through 3-4 days of 24/7 sleep. What kind of a life is sleeping for 3-4 days out of 7 days in the week. Another thing I have experienced with the higher doses is a brain effect. It basically kills my memory for a time period during the infusion and afterwards for several days. So when I wake up, I have to literally build my week back up as far as what I was doing, what I left undone, etc. That takes a whole day itself, of trying to piece together who you were, what you were doing, your life basically is what you spend the first day doing.
When I say sleep, I really mean sleep. No one has been able to wake me. I do not eat or go to the bathroom, I am literally unconscious.
Plus I pre-medicate with Cortef so I am still good for about 4 hours after the infusion is finished. But then I just crash where ever I might be standing or sitting and I am down for the count. I fell asleep in my soup on Thanksgiving dinner, everyone just went home after that performance. I've flooded my house too because I started a bath and sat down, and wham, I was asleep until the firemen broke the door down.

Oh, and yes I do all the recommended pre infusion rituals. I have trouble finding immunologist who will take me as a patient. Back in 1998 I was only IgG deficient. Now I am IgG, IgA and IgM deficient. My doctor shrugs her shoulders and says she doesn't understand since her other patient on sub-q does so well.
Oh, now I go between 10 days and two weeks. But that is about the max I can go. I switched to gammaguard last year and it is only 10% serum. Well I got two MRSA infections from rose pricks. So I went back to the 20% Hizentra.
I think I am going to try the HyQvia but since it is a 10% serum I don't know if it will hold me.
What scared me is that my MRSA infections were what is classified as community MRSA, meaning it is in the air. I am homebound so I don't know how much more I can protect myself.
sorry to rattle on.