Hey Glider!
I have not tried SubQ, but I do have horrible tiny fragile veins and I get my IVIG at home with an IVIG nurse. I researched Home Health agencies and found one I liked, and one that was not afraid of my lousy veins. Even at the hospital, the IVIG team was used to bad vieins, and once they get to know you, they will find your prime spot.
I don't think I will ever do SubQ- it just does not appeal to me. Both my Immuno and IVIG nurse have told me about patients who have been on IVIG for 20+ years with no ports. Ports are a bit controversial b/c if not cared for properly, can get infected. I have absolutely no plans for a port and my Immuno sees no need for one, and my nurse (has been doing IVIG for30 years) sees no need for ports either.
Like you I bruies, blow veins, etc very easily, but if you can manage the same nurse or 2 who gets to know you, you can avoid a lot of that.

RE: Pre Meds/ Hydration I think it is most common for IVIG folks to take tylenol and Benadryl about 1 hour prior to the Infusion. It helps to drink lots of fluids the day before, the day of, and the day after Infusion...not only will this lesson side effects, but lots of fluids will plump up your veins making it easier to get a line in.

RE: Time between Infusions - I think a lot of people start off receivng IVIG every 4 weeks, but if they get run down or fatigued a few days before the next infusion, or tend to get infections the week prior to the next infusion, they tend to bump it to every 3 weeks.
I prefer every 3 weeks. This is a question I would ask your Dr about ahead of time, what is his reasoning, is he giving a higher dose than he would if you were Infusing every 3 weeks, etc...

Hope this helps... :) LuLu

Hello gliderlove, I have never been on subq, only ivig. I had a central line power port put in 5 years ago and it is wonderful. I did not heve good peripheral veins, they usually had to use my foot or neck for a regular IV. I am also on other meds that are given IV. I do get premeds, IV for hydration prior and post meds along with post IV hydration. I generally do well with the ivig. When I first started ivig 5 years ago it was every 21 days. That has been changed over the years. I currently receive ivig every 7 days.

Hey Countr,

I am glad you posted...I have never heard of IV's in the neck or foot-that sounds so painful. How is your Port maintained to prevent infection? I want to say I was told my nurse would have to flush it or something but I could be not remembering that right...I think it was the neccessity of needing a medical professional to do the flush or cleaning that my Immuno was concerned about, but it is obviously a good choice for you.

Also, How do you get RX'd IV fluids after IVIG? I would so love that. It seems no matter how much I hydrate, there are still times when it never seems to be enough-post IV fluids would be awesome. Sonetimes I wonder if it has to do with Sjogrens, but having post IV fluids would be the ideal delivery system after an Infusion.

Thanks for educating me!
LuLu

What am I missing? Wouldn't pre IV fluids make more sense to pump up your veins?

I have been on both IVIG and SubQ. Currently on SubQ which seems to keep me healthier. When I was on IVIG I wanted a port but was discouraged by everyone. Put it off if you can, but if you are really having so much trouble finding decent veins, push forward. It really should be your call once you have all of the facts.

I do a lot of foot sticks at the cancer center where I work. Some people have lousy veins in their arms but good ones in their feet. Or they have had both breasts and underarm lymph nodes removed and we can't use their arms. I see alot of people with PICC lines.

What is a central venous catheter or PICC line?

A central venous catheter, also called a central line, is a long, thin, flexible tube used to give medicines, fluids, nutrients, or blood products over a long period of time. A catheter is often inserted in the arm or chest through the skin into a large vein. The catheter is threaded through this vein until it reaches a large vein near the heart.

Not sure if it woukd be appropriate for you but it is another option. Plus if you need ct scans often...if you get the Bard brand of power picc it can be used with a power injection during ct scans. Also Bard makes a power port that can be used for ct also. At our center we can only use pwer port-picc for ct scan...not any other brand because the needle could break of during power injection.

I understand that ports, types of ports or sub is really individually based. I can say that as an RN and now as the patient, the power port is the best solution for me. Both myself and my daughter have previously had PICC lines. They didn't last as long as my power port. With a PICC line, Groshong, or Hickman central line you have a tube on the outside all of the time. With the power port, once my infusions are done, the needle is removed and you can not see any tubing on the outside. The majority of my local city hospitals only use power ports and there is also a double power port now available. As far as the concern about central line infections, in the 5 years I have never had an infection. For me it has been an answered prayer. I have bad veins with an average of 24 sticks in the hospital to get a line.
As far as the hydration IV, my ivig pharmacist works with my immune Dr. The majority of their ivig patients do receive IV hydration pre and post to decrease side effects. The pre and post ivs along with the pre and post meds have helped me greatly. Your ivig infusion nurse can call your Dr for the order. A good ivig nurse along with a good ivig pharmicist is worth gold.

Thank you so much for the info countr!
I don't know if I need a port yet
My IVIG nurse usually gets me in 1-3 sticks, but over time a power port seems necessary as my veins get older and over used
I will talk to my Immuno about the IV fluids as I do tend to have side effects no matter how much i pre-hydrate.

I really appreciate the info...Thank you!

Thanks for all the responses. I'm not making a decision until I know if IVIG is a good option for me, but if it is what I will be receiving long term this is something I have been told to prepare for by each doctor I have seen. Sometimes we get lucky and set the IV quickly, but my veins don't typically hold up for an entire round of treatment and I have to go through additional IVs to finish. So it could be a whole event to get one set, and then having to repeat that!! Infection was one concern. My fear of procedures is another. I've been through a ton of procedures and my phobia hasn't improved. But a big barrier is having something that's visible. The condition itself causes a large hit to my self esteem and having this device in all the time I feel would cause additional problems with my confidence. But, if it is capable of making IVs a lot easier I am open to considering...just looking for opinions and experience! Y'all are amazing:)

A power port is not visable unless it is accessed for IV. They have designed the power port to be "cosmetically friendly." You really can't see that I have a port. Even when I am getting an infusion it is not visable except the tubing from the bottom of my shirt. I just wanted to make sure you understood the power ports. I am certain that the decision you make will be the right one for you, and always remember that.

Hi Glider,
I am on SubQ (Hizentra) and love it. The only pre-med that I use is Tylenol. My immunologist told me that Lupus/Autoimmune patients seem to do better on it. I also infuse at home by myself weekly. After the first month, my levels were in check. I also have overused veins from infusing Rheumatoid/Lupus meds in the Dr.'s office. But the SubQ needles are very small. You can use your stomach or legs and not have to access the veins. I also infuse a Lupus medication once a month at the Dr.'s office and inject another med twice weekly. Good luck to you. I wish you the best! Make it a great day.
~Julie

I have a port and love it have had a port since 2007. I had to have it replaced but now it runs through the vein in my neck which is supposed to last longer..i think I am going on 4 yrs with this one not sure. I have crappy veins my port has made them bearable

Nice to see you pcon! Hope all is well!
How do you clean the port or keep it infection free?
I think I have no idea what a port looks like...can't imagine one, and have no idea what it involves regarding basic care...
:) LuLu

Thank you Pcon! We are running into a lot more barriers than expected with getting the IVIG started as they are doing some further evaluations to make sure the infusions will be safe, but it has given me more time to get adjusted to all the possible changes. Lulu, it is under the skin. You'll have to google what it looks like but they should be flushed once a month to keep them open and functioning. With IVIG they will be flushing it each treatment so it probably would not require extra maintenance outside of infusions. It is closed under your skin so once the incision is healed you can swim, shower, etc. without causing problems.

like glider said it is under the skin. I have infusions every 3 weeks they flush it then so I don't have to go have it done they do it when they use it. mine is above the breast just an little bump hardly noticeable. some docs do not allow their cvid patients to have a port mine is fine with it. for me the benefits outweigh the risk. infusions would be a nightmare without it. I infuse 60 g every 3 weeks with the port it takes 6-8 hrs if I had to use veins I cant imagine how long it would take!!