Second try on SubQ

Hello everyone – thought I would provide an update!

I am now a month into SubQ – and I am in heaven!!

I read in the IG Magazine that Gammagard was released this summer for SubQ and early research showed that there are little to no side effects. Having used Gammunex for well over 5 years or more – lost count – I always came down with fatigue, headache and flu like symptoms.

I was doing home nurse admin infusions every two weeks for many many years. My problem is finding good nurses in my rural area. Had nurse not flush my port right and had to have my port replaced in August. No more veins left for IVs!

I tried Hizentra last spring but for some reason my body would just not absorp.

So we decided to give Gammagard a try and I can’t not explain how quick and easy this is. I feel so free. I have come so far my early years – in 2000 of having someone drive over an hour to a hospital and sit for a full day of infusion through an IV to this!

I am infusing between 7.5 and 10 grams three times a week. I use a three or four needle tubing set. Draw the gammard into a large pump syringe and put into a freedom pump which I can carry around freely. The infusions take about 45 minutes from start to finish and so far I can do them all myself!

No side effects, head ache, flu, or blood pressure changes. I get a small swelling at each site where the plasma pools under the skin – goes away over the next 12 hours or so. No bruising or marks left behind. Tiny little gauge needles. I have tried both with and without lidocaine cream – really don’t feel the ***** – but the cream makes me feel more secure.

I am not a nurse – but have given the hubby allergy shots and insulin shots to a grandpa.

The best part is that I so far do not feel any highs and lows between infusions – I actually feel like a normal person. sounds crazy after all these years. With by weekly infusions I would have 2-3 days of feeling crappy after the infusion from side effects but felt stronger and less pain – only to have that decline daily until the next infusion.

Now it feels like I am even keel. My only draw back is a teen daughter who can’t stand seeing the tubing and needles! So i have to announce that I am breaking out the medical gear!

One draw back with the Gammagard is that it does require a larger volume than Hizentra. But I just did not tolerate Hizentra for some reason and the Gammagard infuses so nicely that the under an hour infusion time really is not a problem!

Now my new motto is “have plasma will travel!” no more planning around treatments. I have a cool little rubbermaid with my supplies and can hit the road at any time. The Gammagard recommends three year shelf life when in the fridge and 1 year out of the fridge.

Have a great Holiday Everyone!!

No problem at all!

I am flexible as long as I infuse three times during the week I can adjust. They told me I could do MWF and take off the weekend or whatever works. I have done that already based on activities which is something I have never been able to do. First being tied to the infusion center then to a home health nurse.

They said I could have irritation around the infusion site – like a red rash. One time I did and then I realized it was the small bandaid I was using. I changed to the sensitive skin type and now nothing. On a few of the needle sites when I remove the needle which is only about a half inch and tiny gauge – I get a drop or two of plasma and maybe a pin drop of blood. Some I don’t even have to cover.

Nothing like the huge needle marks and central line scares on my chest from so many years of infusions. I have had a port for about 6 or 7 years.

I have done the infusions in the morning and at night – whatever works best. I thought I would take a nap during – but it goes to quick. When I pull out the needles I put away trash and sharps and go on with life. I don’t feel like curling up and sleeping. No pre-meds at all – no tylenol or benedryl. I can pick my sites as well. They said that some patients like reusing and some like rotating it was completely up to me.

I have a layer of “fluff” from so many years of steriods. About 200 pounds at 5′ 4″ – so I do have enough skin and fat to pinch each site which helps.

I have done both sides of my stomach. I prefer the lower portion of my stomach. I have done inner thighs. Last week I got brave and did my upper arm – towards the back. I really like that site but a little tricky to put in the needles and get the plastic tagaderm covers with one hand! You can also do your hips and back if you have help.

These are vein infusions – so they are sites where you have enough tissue. Each infusion site absorbs what looks like to me size of an egg in diameter. The skin just looks a little dimply like you have cellulite. But the next day it is all smoothed out. I think I am going to use some Vitamin e oil to keep my skin healthy. I started using that after so many nerve surgeries to keep scares soft and it really works well.

I will do an infusion tomorrow and will post a few pictures. Mayo and my neuro never recommended either. I happen to read in the IG Magazine and kept following the research. I deal with Coram which is a national pharmacy that helps patients with home health. I talked with my pharmacist – in Minnesota and he worked with my doctor and insurance company to get everything approved! He had done the research on the efficacy of the treatments for long term improvement and reduced side effects. If I wasn’t married – I swear I would marry this guy for changing my life!! My neuro is really good – Mayo trained and very on top of CIDP – but I think once you get on a general maintenance program that you really have to be proactive on your own care!

Just a quick update! The SubQ is going fabulous. I can’t believe how much better I feel on a regular basis and absolutely no side effects. What a change. I am a pro at the system and the needles. Have even cut down on other meds and ready to start building some strength back after all these years. I am doing 27.5 grams over three days each week. Doing it myself and still trying learn the best places for the infusions. Legs are the best so far! I am hopeful that this will continue to help with little backsliding. I certainly weather the winter with fewer illnesses that I normally contract! But I am also not visited by home health nurses who are with others who are sick which I think makes a huge difference.

I do still have my port. Of course the timing was just bad. I had a home health nurse not flush it properly and it got a clot in the summer so in August I got a new port. I did not know I would be trying SubQ in a few months – go figure! So I am having the port flushed once a month for now. I hate where this one is placed so I will probably ask to have it out this summer. My last one was deeper and never bothered me and this one just sit awkward.

I am fortunate in this case to have some extra padding on my bones. I gained quite a bit of weight in the beginning with high dose steriods. I could empty the fridge at midnight! So I have no problem with the needles and tissue. I have to say it is actually more comfortable if I infuse in areas that are not overly fatty. The plasma just does not absorb that well. I have read up on this and it does same some folks find that in the fatty areas repeated infusions can build up a scar tissue in the fat which makes sense. I use 4 needles and so the fluid under the skin is not huge. since I have started it seems like my tissues has adjusted and actually see almost no swelling or redness. I shift my areas tracking on a log and try to alter the layout of the needles to keep the sites from being exact each time.

My Neuro who is quite young and was trained at Mayo where my primary CIDP neuro is was not thrilled about the treatment either and never recommended. What turn the corner for me was my specialty pharmacists who had helped me manage my home care for a very long time. After research and talking we just knew this would be a better choice for me. Coram out of Minneapolis is my home health pharmacy. I also have to say that Baxter has been great to work with. They provide tremendous support.

Ironically my husband had started a new job and we had picked up BC/BS but were not impressed with how they were handling care. We made the decision to keep my insurance. I am beyond lucky to be able to work from home for the Washington Post and have Aetna which approved the transition from Gammunex IVIG to Gammagard Subq with no problem at all. All it took was new orders from the Neuro and I had my first month of SubQ before I was even finished with the IVIG.

Hang in there sometimes the medical community will eventually catch up with us all!!