April 25, 2017 at 9:16 am #112546
Has anyone here had subcutaneous infusions? I’ve had so many awful problems with the intravenous infusions that I think switching to subq woukd be a relief. I’d like to hear about someone else’s experience.
April 25, 2017 at 10:35 am #112547garyscogginMember
I am considering SubQ as well. I currently get it IVIG. I’ll be interested in people’s responses!
April 25, 2017 at 11:16 am #112548chirpybirdyParticipant
I did SubQ infusions for one summer. I decided to go back to IV because it was less invasive on my time. I wanted to try SubQ because I wanted to be in control of when I got my infusions. But because I did not switch from my current Gammulux 5% to a 10% solution because I did not want to rock-the-boat. I don’t get any side effects from Gammulux and was afraid I would if switch to Hirzenza (sp??). So because I was on a 5% solution I had to give myself so much that it took almost as much time as my IV infusion but I was doing it twice a week now!!! So i felt like I was always getting an infusion. I did like the fact that I was in control… I did it one day at my workplace. But I did not like how often I had to get infusions. But I do hear that if you have problems with the high and low of IV infusions because the immunoglobin is given in a high dose and then depletes over the next few weeks. Well, with SubQ you keep a more consistent amount of the immunoglogib in your blood so not so much hign and low effects. Less side effects then too. But since I do not have problems with IVIG and my veins are good (so far) I went back to IVIG as I only need the infusion once every 5 weeks instead of twice weekly. But I will go back to SubQ if ever start to have problems with IV infusions. They were not hard to do once I was trained. No nurse required after training period. Good Luck.
April 25, 2017 at 4:09 pm #112549
Subq was an early term for SCIg. Many people can give SCIg to themselves in lieu of going to an Infusion center or Hospital. SCIg saves time and money for those that can tolerate it.
As far as regular IVIg treatments go, they are far easier tolerated, and MUCH faster given, when one has a port or PICC Line. IVIg Side Effects: It is fairly common for patients to experience headache (which can be mild to severe), stiff neck, and fever during or shortly after an infusion. Patients may often feel fatigued or flu type symptoms for a day or two after their infusion as well. These symptoms are usually related to aseptic meningitis syndrome (AMS). AMS symptoms are manageable and can be minimized or prevented by infusing IVIg very slowly. More AMS info here:
If an increased dosage or rate of IVIg is hard for some to tolerate, consider SCIg as an alternative treatment. SCIg does what IVIg does treatment-wise with less possibility of AMS. SCIg is a subcutaneous injection/shot given into the fat layer between the skin and muscle. Many people can administer SCIg themselves; I’m not one of those. I’m overly sensitive to anything puncturing my skin and these shots really stinged me, so I discontinued them. I’ve since had a few other types of subcutaneous shots and tolerated them as long as they were given v e r y slowly. SCIg is discussed here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2817783
April 25, 2017 at 7:17 pm #112550
The latest information I’ve read about ports is that the infection rate among immune deficient patients is so high — 26% — that the majority of doctors have stopped using them. Some of the infections have been life-threatening. I want to get away from having anything — including infusion connections — stuck in me 24 hours a day. I’ve had major problems when trying to keep the needle in for five days and nights. I’ll spare you the details, but both my forearms are covered with painful bruises and some of my veinns are so sore I can hardly bear having anything even brush against my arms. The nurse has to change my needle to a different locationseveral times during each infusion and remove it for the night. I need a better way. I have both CIDP and a primary immune deficiency, and I will need gamma globulin regularly and frequently for the rest of my life.
I’m seeing my neurologist next week and will discuss this with him then. I’m also going to talk to the head nurse at the infusion service I use and learn about what’s involved in making the transition. I was hoping to find someone who is using SCIG successfully and could relate his/her experience.
Thanks for your response.
November 8, 2017 at 7:42 am #113505Collins22Participant
SandraP, like you-was having the same issue with my arms/veins and was 37 when started treatment. Had a port placed about six months into treatment. I’m highly immunosuppressed due to autoimmune encephalopathy and was worried about the risks as well. After two months, my scar turned bright red and purple. Turned out one of the sutures didn’t dissolve properly. Let’s just say it let itself out so to speak…and so did some antibiotics then was fine. Not a single issue in nearly two years.
My dad and uncles all have ports for cancer treatment of various kinds so I️ felt very comfortable with it. I’ve flushed and cared for my dad’s for years.
The other form of IVIG seems more invasive and I️ would have to do it more often to get any benefit. I’m going to be on it forever, so I️ love my port. Hope this helps.
April 25, 2017 at 8:18 pm #112551midilanceParticipant
I am on my second port. The first one got infected and I went septic. 911. Emergency room. In the hospital for five days. Almost died. Even after that, having a port is such a convenience I had mine replaced. I now know how it feels when it gets infected and will know to get to the emergency room in a hurry. I am on my second port and all is well so far.
April 25, 2017 at 9:39 pm #112552
I had three tunneled catheters (jugular) and two PICC lines. One of the catheters was in for almost two years. I kept everything clean, often myself (learned from nurses), and never had a single infection. I’ve never heard of an infection rate as high as 26% in a non-third world country. Please post a link to the article.
Prior to the ports, I was regularly bruised, infiltrated, and painfully poked with IV needles. In addition, the tape was often stronger than my skin and I was left without skin and bleeding when they ripped off the tape. Now I only let them use paper tape. I also object to them EVER using the veins in my hands or wrists (too great a risk of injury). If I had to go back to regular IVIg or PE treatments I would only do it with a port… that is what my experience has taught me, and I was treated at a center of excellence!
My advise to those who suffer at the hands of the many “woefully trained” Nurses is to ask for a senior Phlebotomist whenever an IV needle needs to be inserted.
April 25, 2017 at 9:58 pm #112553
This thread should probably be linked to similar ones where different experiences had been discussed:
April 25, 2017 at 11:49 pm #112555
Jim, thanks so much for those links to previous discussions of this subject. I’m relatively new here and have had trouble navigating the site.
April 25, 2017 at 11:47 pm #112554
This information from the Immune Defiency Foundation concerns the high rate of complications caused by implanted ports. It makes me very reluctant to go that way. I’m very prone to infections and sensitivities to foreign objects in my body. I had a PICC line for 6 weeks once and it drive me crazy.
April 25, 2017 at 11:55 pm #112556
So far I’ve had two rounds of infusions, 5 straight days once a month. By the end of those 5 days my veins are begging for mercy and both my arms ache. Right now, almost three weeks since my last infusion, I still have bad bruises and pain. And soon it will be time for another round of infusions. The thought of doing it this way for the rest of my life makes me weep. At the very least, I need to spread the infusions out over the month. As I said, I’m seeing my doctor next Tuesday and will discuss the options. I aporeciate everyone’s comments and your shared experiences.
April 26, 2017 at 8:45 am #112557chirpybirdyParticipant
Sandy, when I was doing SubQ infusions they were successful. It controlled my CIDP and I tolerated the drug being given SubQ. I just decided to go back to IVIG because I was not having vein problems or side effects from the IVIG infusions and they were needed less often. But yes, SubQ is a good alternative if you can’t tolerate the IV infusions. You get smaller amounts of the IG more often so you probably will not have as many side effects. The one downside I did not like is I had to stick 3 to 4 tiny needles into my skin in order for the amount of IG needed to be able to be administered. The tiny needles are so small they hardly hurt (feel like a pin-prick) but I still did not like it. The IG is administered in between the skin and muscle layer (subcutaneous area) so you will have pouches of the liquid in the area you administered the IG until it absorbs. (It takes a while for your body to absorb the liquid). Also I have heard that some people have site reactions where you stick the needle. Redness, swelling and itching. I did not have this. I also heard that you might end up with hard nodules in the areas you stick the needles over a long period of time as scar tissue will form. Best thing I did like is I was in control of when I did the infusions and no nurse involved. I could do it very late at night while watching TV or bring my stuff and do it at work while sitting at my desk. I do advise moving to a 10% solution of IG as I stayed on the 5% solution and I just needed too much IG in one setting making my infusions take too long. Good luck!
April 26, 2017 at 9:23 am #112558
The nurse isn’t really my problem. All my life, techs and nurses have had trouble drawing my blood for tests because my veins are so small, so I should have expected problems with infusions. Because the fluids are pumped in, not dripped, more pressure builds up in the line. Twice my needles have broken, and they’ve popped out of veins several times. I’ve had bleeding at the needle insertion site, and a painful buildup of fluids under the skin. One thing that worries me is that once when fluids got under my skin my forearm swelled and turned red. I’m afraid this indicates poor tolerance of subq. Lots of questions for the administrative nurse and my doctor!
November 8, 2017 at 7:49 am #113506Collins22Participant
My infusion team told me that my IVIG (maybe the brand – I’ve done Carimune and Gammagard) is hard on the veins because of the viscosity.
I’ve lost all sensation in my arms so it wasn’t the needles that bothered me. My vein would ‘blow’ as they called it during infusion and would swell up like Popeye’s arms. One of the many reasons I️ opted for a port.
April 26, 2017 at 9:43 am #112559
Another question: Does spreading out the infusions, instead of getting them five days in a row, help with the side effects and discomfort, as well as the “down time” as the effects wear off? Have you tried this? At what intervals do you receive infusions?
July 18, 2017 at 3:58 pm #113024
The major manufacturers of SCIg, usually accepted by insurance companies, are listed here:
July 19, 2017 at 11:55 am #113025Theresa BohrerParticipant
My neurologist recently prescribed weekly subcutaneous IG (“sub-q IG”) infusions in place of IVIG. My insurance company denied the request because Hyzentra is not FDA approved for use in treating CIDP.
Both are the same drug; human immunoglobulin.
IG has been demonstrably effective in keeping the advance of paralysis from my CIDP at bay.
Neither I nor my neurologist believe there is any reason to think a subcutaneous delivery of IG to a CIDP patient would be any less effective than IV infusions of the same drug.
I think sub-q IG treatments for CIDP have the potential to dramatically improve the lives of patients, as well as the potential to reduce costs for the insurance companies. I want to give it a try. I need the following questions answered in order to further appeal my insurance company’s denial.
ARE THERE ANY STUDIES BEING CONDUCTED OF SUBCUTANEOUS IG AS A TREATMENT FOR CIDP?
ARE THERE ANY BRANDS OF SUBCUTANEOUS IG THAT HAVE BEEN APPROVED BY THE FDA FOR USE IN TREATING CIDP?
July 19, 2017 at 4:38 pm #113027
The product you are seeking to use (Hizentra™) is approved for use via SCIg delivery in the US. A record of the official US Dept of Health approval can be found on the FDA website here:
The successful clinical trial that preceded the approval of the drug is here:
Additional studies can be found at the following link:
It seems you are stuck in the typical red tape of the insurance industry. You will need to read their detailed coverage policy and determine the criteria you must meet in order to get the treatment. You will find helpful info about dealing with that in the following threads:
July 20, 2017 at 11:49 pm #113028LMayberryParticipant
This was posted on Twitter July19th:
FDA Accepts CSL Behring’s Supplemental Biologics License Application for Hizentra® Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Indication
KING OF PRUSSIA, Pa. — 19 July 2017
Global biotherapeutics leader CSL Behring today announced that the U.S. Food and Drug Administration (FDA) has accepted for review the company’s supplemental Biologics License Application (BLA) for Hizentra® [Immune globulin subcutaneous (Human) 20% liquid] for the treatment for Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) as maintenance therapy to prevent relapse of neuromuscular disability and impairment. CIDP is a rare immune-mediated disorder of the peripheral nerves and the effects can worsen over time.
“We remain committed to CIDP patients and their families and the review of this application is another step towards delivering on our promise to them.” said Dr. Andrew Cuthbertson, Chief Scientific Officer and R&D Director, CSL Limited. “We’re also excited about the possibility of adding a CIDP indication for our industry-leading portfolio of immunoglobulin therapies.”
The application was based on data from the largest-ever randomized CIDP trial, PATH (Polyneuropathy And Treatment with Hizentra®). The clinical trial was completed in March and was designed to demonstrate the efficacy, safety and tolerability of two different doses of CSL Behring’s subcutaneous immunoglobulin (SCIG), Hizentra®, compared with placebo, in the maintenance treatment of CIDP patients previously treated with intravenous immunoglobulin (IVIG).
Hizentra®, the no. 1 prescribed immunoglobulin therapy in treating primary immunodeficiencies (PI), the most prescribed SCIG worldwide, and the only 20 percent SCIG designed with the natural stabilizer L-proline, was self-administered by patients and care givers throughout the study. Subjects were allowed to use dose volumes up to 50 mL/site and infusion rates of up to 35 mL/hour, to provide them with greater flexibility and autonomy to infuse when and where they choose. A long-term open label extension study is ongoing and is expected to be completed later this year.
Hizentra® (Immune Globulin Subcutaneous [Human]), the first 20 percent SCIG developed for subcutaneous use, is registered in over 46 countries and approved in North America, Europe and Japan. Hizentra®, the world’s most prescribed SCIG, has a proven track record of safety, efficacy and tolerability and has over 3.6 million exposures worldwide since 2010. In the United States, Hizentra® is indicated for the treatment of patients with primary immunodeficiency. In all 29 European/European Economic Area member states and Japan, Hizentra® is authorized for treating patients diagnosed with PI as well as secondary immunodeficiencies.
For country specific indication information, visit:
Switzerland: https://compendium.ch/mpro/mnr/22484/html/de (German) or https://compendium.ch/mpro/mnr/22484/html/fr (French)
United States: http://www.hizentra.com/Professional/Prescribing-Information.aspx
Important Safety Information
Immune Globulin Subcutaneous (Human), Hizentra®, is indicated as replacement therapy for patients with primary humoral immunodeficiency (PI), age 2 and older. This includes but is not limited to the humoral immune defect in congenital agammaglobulinemia, common variable immunodeficiency, X-linked agammaglobulinemia, Wiskott-Aldrich syndrome, and severe combined immunodeficiencies.
WARNING: THROMBOSIS – Thrombosis may occur with immune globulin products, including Hizentra®. Risk factors may include: advanced age, prolonged immobilization, hypercoagulable conditions, history of venous or arterial thrombosis, use of estrogens, indwelling vascular catheters, hyperviscosity, and cardiovascular risk factors.
For patients at risk of thrombosis, administer Hizentra® at the minimum dose and infusion rate practicable. Ensure adequate hydration in patients before administration. Monitor for signs and symptoms of thrombosis and assess blood viscosity in patients at risk for hyperviscosity. See full prescribing information for complete boxed warning.
Hizentra® is contraindicated in patients with a history of anaphylactic or severe systemic reaction to human immune globulin preparations or components of Hizentra®, such as polysorbate 80. Because it contains the stabilizer L-proline, Hizentra® is contraindicated in patients with hyperprolinemia. Hizentra® is also contraindicated in patients with immunoglobulin A deficiency who have antibodies against IgA and a history of hypersensitivity.
Hizentra® should be administered subcutaneously only. Do not administer intravenously.
IgA-deficient patients with anti-IgA antibodies may be at greater risk of developing potentially severe hypersensitivity and anaphylactic reactions with administration of Hizentra®. If hypersensitivity occurs or anaphylactic reactions are suspected, discontinue administration immediately and treat as medically appropriate.
Monitor patients for aseptic meningitis syndrome (AMS), which has been reported with SCIg. In patients at risk of acute renal failure, monitor renal function, including blood urea nitrogen, serum creatinine and urine output. Also monitor patients for clinical signs of hemolysis or transfusion-related acute lung injury (TRALI).
Hizentra® is derived from human plasma. The risk of transmission of infectious agents, including viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent, cannot be completely eliminated.
The most common adverse reactions (observed in 5% or more of study subjects receiving Hizentra®) were local reactions (ie, swelling, redness, heat, pain, and itching at the injection site), headache, diarrhea, fatigue, back pain, nausea, extremity pain, cough, rash, pruritus, vomiting, upper abdominal pain, migraine and pain.
Ig administration can transiently impair the efficacy of live attenuated virus vaccines, such as measles, mumps and rubella. It can also lead to misinterpretation of serologic testing.
Please see full prescribing information for Hizentra® including boxed warning.
CIDP is a rare disorder of the peripheral nerves (those outside the brain and spinal cord). The condition is immune-mediated and the effects can worsen over time. The protective covering of the nerves is damaged, which may cause numbness or tingling, muscle weakness, fatigue and other symptoms. CIDP can occur at any age and is more common in men than in women. If left untreated, approximately 30 percent of CIDP patients will progress to wheelchair dependence.
For more information about the PATH study, visit http://www.clinicaltrials.gov and search with identifier: NCT01545076.
About CSL Behring
CSL Behring is a global biotherapeutics leader driven by its promise to save lives. Focused on serving patients’ needs by using the latest technologies, we develop and deliver innovative therapies that are used to treat coagulation disorders, primary immune deficiencies, hereditary angioedema, inherited respiratory disease, and neurological disorders. The company’s products are also used in cardiac surgery, organ transplantation, burn treatment and to prevent hemolytic disease of the newborn.
CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma. The parent company, CSL Limited (ASX:CSL), headquartered in Melbourne, Australia, employs nearly 20,000 people, delivering its life-saving therapies to people in more than 60 countries. For more information visit http://www.cslbehring.com and follow us on http://www.Twitter.com/CSLBehring.
Office: +1 610 878 4802
Mobile: +1 610 306 9355
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