Subcue questions

[glowing]

Hi everyone. I was diagnosed with cvid last year and began receiving ivig in August. For a number of reasons, that I won't bore you with, I am thinking of asking my immunologist if I can change from attending hospital every three weeks to a weekly treatment at home. I would like to know how deep the needle has to go under the skin and if it hurts a lot more than in the vein. It's not that I can't bear a little discomfort but I like to have an idea what to expect. If you're happy with this sort of treatment then please encourage me. If you're not will you please explain why.

Glowing

[emsy]

Hi Glowing

I have SubQ at home. I hate needles and cant bear to have them inserted into my veins (my veins usually collapse anyway!) I have 4 teeny tiny 9mm butterfly needles which even I can manage to insert. It doesnt hurt, at times it can be a little itchy during infusion but not always. I got a rash at the site of injection at first but pre treatment with antihistamines has stopped that completely. If you are worried about pain the Americans on facebook all use "numbing cream" called Lidocaine but I dont find it painful although I can feel the needle going in. I have never had IVIG so I cannot compare.

Hope this helps

Emsy

[bamber]

I have subcutaneous infusions once a week. I used to have IV but my veins were rubbish. I don't mind needles- but found the small needles as Emsy uses, were making me involuntary jump a little and it stung a bit. So I have Emla numbing cream , here on NHS, only trouble is the cream has to go on at least 1 hour before in all the areas to be used to inject to work. So if you want it its available. Have done without in a hurry but why suffer?

[willo]

Hi

I use emla cream, four needles and no problems. There is swelling at the needle sites but that is just where the infused fluid is waiting to be absorbed. Then there is the feeling of independence that goes with looking after yourself, although someone does need to be with you.

I have IVIG if we are going away on holiday, but much prefer sub-cut.

[glowing]

Thank you for your encouragement. I don't usually have a problem with needles however I didn't like the idea of having something that might be uncomfortale if I have a choice. As you put it Bamber, why suffer? I feel quite keen to give it a go and hope my immunologist will agree.

Glowing.

[liz2mac]

I've never had subQ, though many have tried to persuade me in the past. I think I'm mostly just to stuck in my ways, though don't have a problem with iv access so it seems easier to stick with what I know. It's really interesting to hear you all talking about it though, hope you don't mind me "listening in"?
Good luck glowing, hope all goes as you want it too.
Liz

[dianesistern]

Hi all i have done both and both have pros and cons was on ivig for 20 years, even done that at home for a short while, i had sub Q for about 3 years weekly but found i was always thinking about infusing and then sore for a couple of days but on ivig dont think about it so much only comes round every three weeks and in between i can forget it, when i was on sub Q the juice had to be stored in the fridge when i woke up the first thing i saw was medication and i had boxes of medical stuff all over the house, but did find the side effects less pronounced, also i am not very good at recognising when i may have a problem with infection but the tests they do at hospital pre infusion pick them up better and more regular blood tests help keep an eye on things, when on sub Q i was forever chopping and changing my infusion days which can be a good thing but i never knew where i was but i know alot of people on sub Q that find it brilliant so i think its a suck it and see thing Diane

[liziJ]

Hi Glowing,

I was diagnosed with CVID in 1999 and had IVIG for nearly two years before switching to SCIG so I could do weekly infusions at home. My own experience is that SCIG is infinitely preferable. When I was pregnant, over 3 years ago, I had to temporarily go back to IVIG once my stomach grew so big that it was too uncomfortable to insert the needles, and I hated IVIG just as much as I had done ten years earlier!

For me one of the most important differences between IVIG and SCIG is how I feel afterwards. I used to feel SOOOO ill after an IV infusion (as do most IV-ers that I know) - for about 2 or 3 days after each infusion I'd feel like I had proper hardcore flu and was unable to do anything. After SC infusions the worst is that I have a bit of a headache and am a bit tired. I've even been known once or twice to infuse before a night out! I often take a couple of paracetamol as I start each infusion and that really helps with the headaches.

Another big difference is that the infusions themselves are so much less stressful for me as I used to find IVIG very traumatic. It would take quite a few sticks before they found a vein, so I was miserable before they even started (and finding the vein was always quite a painful business). And then there was something so depressing about being hooked up to the IV pole for hours on end, feeling steadily worse and worse as the day went on. SCIG is nothing like that! I do it at home in the evenings, on the sofa in front of the TV. Hubby makes my dinner, and the rule is that I'm in charge of the remote control on infusion night!!

In terms of what the infusion will feel like - well to start with, as long as you've used EMLA cream you won't feel the needles going in at all. So although it takes a while to get used to sticking needles into yourself, it won't be a painful process. There's a few places in your body where you can infuse (usually stomach and thighs, though I've heard of people using upper arms and other fleshy/fatty areas) - generally I'd say the fattier the better in terms of minimising any discomfort. I've infused in both thighs and stomach, and FAR prefer stomach - the flesh in my thigh just seemed to be a bit denser or something. But I know other people who prefer their thighs.

Once the needles are in and you've turned on the pumps to start infusing, you won't feel anything at first. As the infusion goes on and the immunoglobulin starts to build up under your skin it will get a little bit uncomfortable (but not painful). Mostly it's just the pressure of having this extra liquid under the skin that takes a few hours or so to disperse. Because of it you'll see a raised red lump at the infusion site and the surface of the skin might go dimply on the bump. I'd say it's irritating, but definitely not painful.

Sometimes as the infusion goes on you do feel a strange sort of sensation that's very hard to explain. Hot and itchy under the skin would probably be the best way to describe it. I'd say it can range from irritating to uncomfortable, but very rarely painful. Whenever it's uncomfortable the absolute best thing you can do is put something cold directly on to the site or the bump (while it's still infusing and afterwards too). I usually put a few ice-cubes in a plastic sandwich bag and stroke them over the site.

Once the infusion's over it doesn't hurt to remove the needles. The infusion sites might feel a little bit tender for a few hours.

So that's as clear a description as I can give as to what a SCIG infusion feels like. One other thing I would say is that when I stopped getting IV infusions at hospital and started doing SCIG at home, it was wonderful to have the freedom to do it in my own home, in my own time. The familiar surroundings helped to make the whole experience less stressful. But there was part of me that missed the regular contact and support from the immuno nurses. So I think it's really important that you stay in touch with people on this forum so you don't feel isolated and abandoned.

Well I've described it all in as much detail as I can think of, but if there's something I haven't told you that you'd like to know, just ask!

Lizi

[glowing]

Thank you all for your help and especially to you Lizi for the detailed descriptions. You're all very encouraging and it's good to know there is support when I need it. I'm only just getting my head around the diagnoses and what it all means. Glowing PS. I realise I should have put subcut and not subcue.

[liziJ]

You're very welcome - and we knew exactly what you meant! Subcutaneous infusions are known by many names ... Subcut, SubQ, SCIG - and I think subcue works equally well! I don't get to check these boards as often as I'd like but please feel free to email me with any further questions I can help with:
(Email Removed)

Diagnosis definitely takes a long time to get your head round. I can't recommend this forum highly enough for helping you to deal with coming to terms with it all. Use us, quiz us and rant at us as much as you want to!

Lizi x

[s162216]

Hi,

Just a friendly piece of advice from your admin/moderator, avoid putting personal email addresses on public view on this forum as sadly many people have fallen victim to unscrupulous persons/companies obtaining their email addresses from forums.

If you want to give someone your email address, then use the Private Messaging facility, click on the little envelope symbol under the name of the member whom you wish to contact.

Thanks,

Sam

[emsy]

Bamber, Wilo and Lizig

How do u get the Emla cream? from your GP, Immunologist or over the counter? I dont really "need" it but if it helps......

Emsy

[s162216]

Its Prescription Only so you would have to get it from either your GP or Immunologist, it might be best to try your GP first though as its likely that all your immunologist would do is send a letter to your GP asking it to be put on your repeat prescription.

Personally I've never used it when I change my subcutaneous insulin cannula every 2 days, I find it more useful to be able to feel pain as then that way I'll know if I've hit a blood vessel or gone too close to the bone for example (I do it around beneath my back as its the only place where I have enough subcutaneous fat).

Sam

[bamber]

Mine gets delivered with the Subcuvia (When there is supply of Subcuvia - my brand name for the immunoglobulin I have) and all the other things needed for infusion. So it comes from the Immunologist. I would ask your nurse or Consultant - when you change over. My immunoglobulin and Emla come through a delivery service to my home. Therefore I sort of get them free. My other prescriptions from my G.P - I have to pay for - but I buy a season ticket so I get my moneys worth. It might be different for different hospital.

[willo]

Mine is also delivered with the Subcuvia and supplies. As Bamber says just ask your nurse or consultant.

Stay well

[glowing]

I have been told that I will be able to have subcut and that they are going to sort it out for me. I was told I have to have a change of product and attend hospital weekly for six weeks to make sure I don't get a bad reaction. Does anybody know why I have to have a change of product?
Glowing

[s162216]

Hi,

Its because IgG solutions for IV are much less concentrated than SCIG products which are typically 16% or 20% compared to 5% or 10% for IV, having concentrations which are low like that would make the patient have to have hugh volumes every week and as the subcutaneous route has to be absorbed into the circulation unlike IV you can only put limited volumes in each site so it would mean a lot of lines and pain if a site was overloaded. Plus the solution is adapted for IV use rather than SC so viscosity etc usually have to be different.

Sam

[glowing]

Thank you Sam for explaining that so clearly. I can understand why they have to be careful in case of a reaction. Just hope it works for me.
Glowing

[vale]

Hi, I have subQ infusion 5 times per week, and from next week I will try 3 times increasing the volume of each infusion
but I read that most of you have it once per week ..how many vials do you inject? can I have 5 vials togheter?
vale

[willo]

Hi Vale

best advice is to speak to the professionals at your clinic before you make any changes to your infusions.

I can confirm that I infuse 70ml of subcuvia (7 vials) but that is how my specialist nurse trained me.

We can only really relay our personal experience and that does not mean it is the right thing for you.

Stay well