Second try on SubQ
AnonymousDecember 1, 2011 at 11:00 pm
I am getting to transition to SubQ once again. This time I will be using Gammagard and I am hoping that all goes well. My biggest problems are access to home nurses of good quality since I live in a very rural area. I have been on Gammunex for many many years and I do get a headache and flu like symptoms and there is hope on Gammagard that this will be reduced or avoided all together. I let you all know how it goes – they are shipping my doses and supplies tomorrow!
AnonymousDecember 21, 2011 at 2:07 am
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!!
December 21, 2011 at 6:30 pm
Wow – that sounds great! I am rather new to posting to the forum although I have been dx with CIDP for 3 years. I am currently on every 10 day IVIG infusions and have the same side effects that you have. I feel like I am tethered to the infusion center and definitely feel best the few days after my infusion with a slow decline until my next infusion. My concern with SQ infusion is skin issues but is sounds as if you are tolerating it well and you are spending about 2.5 per week infusing is that right? does it matter which days of the week you are doing it or is there some flexibility ? For example, if you have plans on a sq infusion day/night can you easily move to the next day? can you do 2 days in a row or is this difficult for skin? How often do you have to rotate sites? sorry for the barrage of questions! This is so appealing and so far my local neurologist and the Mayo have not recommended it. Thanks so much for letting us know how you are doing and putting up with my questions!
AnonymousDecember 21, 2011 at 6:56 pm
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!
AnonymousDecember 21, 2011 at 8:14 pm
Thank you so much for sharing your story. My daughter does sub-q and we love it, too. She is so thin and does not have any fluff so that makes it hard. Doing 22.5ml every week. She absorbs really quickly. We only do belly area as that is what they told us. We are actually doing one now. It will take about 2 hours or so. No headaches as that is why we switched because of migrains. thanks
December 22, 2011 at 7:35 am
Thank you so much for posting your detailed experience- I actually go for infusion today with the usual mixed feeling of happy to get some energy and strength back mixed with dread of headache/ joint pains/ chills/ nausea and fatigue that I will suffer all day. I too have a port. I am petite 5 feet tall and 105 lbs so I worry about where I will put the fluid – I currently receive about 20 grams per week in 200 ccs of fluid in the form of Gammunex. I will definitely revisit this with my neurologist as I think it would be a quality of life improvement and I understand it is cheaper for insurance so I do not think that that would be an issue. Thanks again! Off to IVIG….
AnonymousFebruary 28, 2012 at 5:26 am
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.
February 28, 2012 at 5:30 pm
Thank you so much for taking the time to give an update and I am so happy that you are doing well on sq ivig! Do you still have your port for back up or have you been able to remove it? Is there and issue with the skin and tissues becoming less absorbent over time? I know kids with primary and acquired immune deficiencies use sq as their main therapy but don’t know the data regarding this- I know this is being looked at with studies for CIDP and I think that since no well done studies yet neurologists are reluctant to recommend yet – thanks again
AnonymousMarch 1, 2012 at 3:19 am
starli and selahsmom:
THANK YOU for taking the time to post your info and good news. I have been trying to get my subQ approved from BC/BS but so far no go. Insurance co says I do not have enough body mass/fat/weight to handle the neuro dose concentration. I am on 25 IV of Gamagard/week. I am 5’8″ (and shrinking!), and weigh approx 118. Very thin bone structure (20+ years on low dose prednisone has done a number on me, incl. my bones!).
Selahsmom: It sounds from your posts that your daughter is thin. I am interested to know how you got insurance to approve it.
I suffer greatly from the side effects from iv IVIG and need another solution. Sub Q seems like the perfect solution to that challenge. I also have advanced Stiff person Syndrome, which is also treated with IVIG. I need the med, just can’t live with the iv side effects. Which is worse? the life threatening side effects from a reaction to the iv IVIG or the life zapping effects from my illnesses? Hmmm? The choices we face!
Any info you can add will be greatly appreciated. I see my neuro on Monday – he is all for the subQ and is open to any/all info on sub Q as well as contact info for Drs who have had success in getting it approved.
Thanks to you both for giving me hope that someday my life might be….will be…..more than a patient and back to a full time mom, a wife, a teacher, a community member…..who takes her medicine and goes about her living, loving and full life!
AnonymousMarch 1, 2012 at 4:06 am
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!!
AnonymousMarch 4, 2012 at 4:39 am
starli thanks for the details. I go to my neuro on Monday and will bring him this info. I will just sit down and type that appeal letter for him – and hand him the pen for his signature (now wouldn’t that be a fun and new patient/doctor relationship?)
I am suffering such nerve pain and the oral medications don’t cut it. A day and a half after the IVIG I find myself thinking about my kids, my family, church, laundry, work, etc etc – and realize at 3 pm I hadn’t once thought about my legs, back, etc. That is what life is supposed to be – isn’t it?
Now, without the ivig, I wake up when it’s still dark, roll over to take medicine, wake up again right before dawn, take some more – and then eventually crawl out of bed to the shower (and a good cry there, waiting for everything to kick in). Ah – but then I see my children and I can begin my “real day.” sub q will be a perfect solution for me – I won’t have to life with a morning cry or a midnight howl.
Will let you know how it all turns out. Thanks for being the wind in my sails today – I needed it 🙂
AnonymousMarch 6, 2012 at 4:12 am
starli and selahsmom:
Just met with my neuro and insurance co still says no. My dr would love to call your drs to find out how they got it approved. Apparently, I don’t have a typical CIDP case and am very, very thin.
I can tell you that thanks to your info my neuro went to a medical clinic on sub Q and the Weill Cornell Medical Center will be starting a trial for CIDP Patients (that meet the strict criteria) for sub q. Go figure – I don’t meet all their requirements.
*Would you mind passing along your doctor/hospital name so my doctor can contact them about how they got insurance to cover?
thanks so much – I am back to that dreadful iv pole, headaches, brain fog and … 6 hr fun included 🙂
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