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Immunoglobulin Titan Games: Sub Q vs IVIG!
Let the games begin! Which do you do, and which do you prefer? What is your experience? I’ll start. Probably like most, I started with immunoglobulin given by IV with an infusion nurse. It went well when they were one day infusions and the nurse knew the “art” of starting an IV. Then my infusions went to two days, and I was sent to an infusion center. Now I was having to either take the IV access home overnight, or get a new IV stick each day. And suddenly, not every nurse was hitting every stick. It was getting difficult and causing anxiety. Then it was decision time. Get a port? Or try Sub Q. I’ll keep this short. I had a port placed and stuck with IVIG because of lifestyle. I’m retired but stay busy. A friend had just gone Sub Q and was loving it. But she was having to mess with it every week, and there were a few minor issues. For me, just setting aside two days a month, going to the infusion center, and opening my port for the two days has been what works. Why did you choose Sub Q or IVIG?
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15 Replies
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Hi Price,
Personally I prefer IVIG like you. I have a port as well and it makes my treatment a lot easier.
I have worked out a treatment schedule every month and have a strict routine I follow. I considered switching to subq, but I would rather get my treatment once a month instead of dedicating a day every week to it. I would also probably not feel like working on treatment day and work monday through Friday, so it would be hard to fit it in. I would rather not spend my weekend doing subq or feeling poorly when it is my only downtime.
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Hi @pricewool and @ashleygregory757,
I’m team Sub Q here. I’ve had many IVIg side effects resolved by changing to the Sub Q route. My severe blood pressure drops were very concerning and my headaches/flu-ish feelings often times went on for days. Ig makes a huge difference in how my LEMS is managed so it was worth going through but, now that I’m on Sub Q, my side effects are only site reactions.
Some think, like you, that having to mess with it at home every week will be a pain; but for me it’s become second nature. I like having my treatments planned around my life not my life around my treatments. Plus, having them in the safety of my home these days without even needing a nurse to come in to help- it’s one less stressor in my life.
My veins were getting to the point of needing a port if I continued IVIG, and even though I have a rod in my back from my scoliosis surgery, I really didn’t want to get a port.
Having subcutaneous immunoglobulin as an option for LEMS and other autoimmune diseases treated by Ig is relatively new. Currently only Hizentra has an autoimmune indication (CIDP). I’m just glad there are options for everyone and that my insurance approved me off label!
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Ashley, I’m with you on this one. It’s deciding how you want to manage your lifestyle, work routine, how structured you like it, and how often. It’s a very personal decision.
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Great reasoning Dawn! And you make so many good points about the benefits of more frequent, sub q delivery. I can’t argue the merits. And, if it fits your weekly planning easily, that’s even better!
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I thought I’d share an extremely important medical event that just happened to me that I think can be extremely relative to this thread!
When I was first diagnosed with LEMS in 2017, my situation was quite critical so we proceeded directly with IVIG. Unfortunately I had serious side effects even from day one, but sadly infusion center just kept increasing pre-meds and continued on with the 5 day loading dose despite serious side effects un-resolving with pre-meds. all 5 days I had worsening reactions like Rash, Migraines, Cough, Vomiting, lethargy and even elevated temperature. I Finished the course on a Friday and by Saturday night was in ER with serious aseptic meningitis confirmed by spinal tap.
It took me close to a year to resolve or get better from the aseptic meningitis. I had to go through several spinal patches, migraine infusion, cranial blocks and lots more. I vowed, I would never do IVIG again since the recovery from the aseptic Meningitis was so arduous and long!
Fast forward to earlier this month when I had a consult with a respected and well published Immunologist. Earlier this year I had a very risky bout with Systemic Bacteremia but caught it just in time before reaching Septicemia. I stumped the hospital Infectious Disease doctors with these quite dangerous systemic and bacterial infections so I was referred to the Immunologist.
Well I just found out 2 weeks ago that labs and medical history show I have Primary Immune deficiency! Specifically, CVID or Common Variable Immune Deficiency and IgA deficiency. Also HAE or hereditary angioedema but this is not relevant to the post.
Now what makes my new diagnosis of CVID and Selective IgA deficiency pertinent to this post, is that patients whom have these diagnoses will usually or have a extremely high occurrence of developing serious reactions from IVIG! for CVID it’s the fact that these patient complement levels and particularly their low C1 levels leaves them extremely vulnerable to developing serious IVIG reactions.
I had absolutely no idea what so ever that low complement levels and C1 levels make you very vulnerable to IVIG reactions. In fact, if you have a diagnosis of Selective IgA deficiency ALL IVIG manufacturers’ list in their package insert that Selective IgA deficiency is actually CONTRAINDICATED for their product use! check out your IVIG packaging under contraindications to see!
So anyone of us that continually gets serious reactions from their IVIG even despite changing brands, and has a history of infections, really needs to see an Immunologist to get tested for these conditions or other Primary Immune Deficiency.
After my mind was blown with this new information, I was then told by the Immunologist whom had participated in many research studies for these individuals, there is another possible solution….
Apparently for people with these immune conditions, they probably can not move forward with the Intravenous route. However, new research has shown that there’s a potential secondary option of utilizing lower percentage of Ig and/or through the subcutaneous route instead!
Apparently lowered percentage of Ig and Ig through the SC or SCIG route has been studied and shown to drastically not only reduce side effects but lessen the risk of serious reactions and even aseptic meningitis!
But as a former nurse and research scientist, don’t just take my word for it, I’m adding some supporting research to prove this point!
1) This article goes more into detail regarding Selective IgA deficiency and ends that the SCIG route can be administered more safely in past anaphylactic IVIG patients:
http://www.igliving.com/magazine/articles/IGL_2008-08_AR_IgA-Content-in-IVIG-Products.pdf
2) This abstract briefly mentions that CVID patients who cannot tolerate IVIG can switch to subcutaneous immunoglobulin (SCIG), which reduces adverse events. The reference articles as well are also quite eye opening:
https://www.annallergy.org/article/S1081-1206(15)00311-7/references
3) This recent 2019 article explains how reducing the percentage of Ig has been helpful in adverse reactions of Immune deficiency patients particularly those with low C1 levels. It also provides the directions and products to use if unwilling to switch to SCIG that has the least adverse reactions. It ultimately points too that even the suggested use of the lowered dose IVIG here, that SCIG ultimately remains a big valid option for those most affected by IVIG side effects…
I could provide so many more articles, but these are just a few to learn from. I think this information is so mind blowing for those that had serious IVIG complications and reassurance that there may be alternate possibilities. I’m still weighing very carefully if I will do the SCIG or not, but so happy I have choices now.
Hoping this info. may help another one of us out there and prevent them from going through what I went through and help lessen any side effects …
Rebecca
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This is all great information, Rebecca! This makes a great case for Sub Q in these circumstances. Do you think you will give it a go? Dawn, a moderator who will be back on next week, reports to me that indeed, on Sub Q, she has experienced fewer side effects.
I experienced pretty severe symptoms during my loading doses, but in my case, they were being administered in the VA hospital day procedure unit. A quick evaluation by these highly experienced nurses and a call to my neuro on staff there, and we stopped. I recovered fairly quickly and a month later started regular monthly infusions.
I believe Sub Q delivery is pretty new. So far, and after asking twice, the VA does not approve Sub Q for me. -
@pricewool
My infusion center was also inside the hospital as well. The PA also came to eval me but sadly continued on and just kept upping the pre-meds.
The concept and usage of SCIG itself isn’t brand new to the medical arena since one of the articles I quoted here where they encourage scig use, was published back in 2008. I also found research articles about scig even earlier than that.
What I do think is new is that just recently more providers (doctors) are looking at the data and patient experiences and realizing scig may be a better alternative for those who keep having severe reactions to IVIG and have recently in the last years or so using it more and prescribing it more within the Ig community.
So what’s new in my opinion is more doctors are prescribing it more now than in the past.
Still not sure if I will try or not. Still giving it much thought, prayer and consideration. I’m still very concerned over the potential for passing on unwanted antibodies and infectious agent like I experienced during my first time ivig administration.
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Thanks for educating me further on the background. I asked my neurologist in the VA about it twice, but was told the VA was not offering it. Perhaps as more doctors give delivery this way and it becomes more accepted, there will be a better chance. I mentioned this thread to our Sub Q practicing moderator, Dawn, and she will share with you when she comes back online.
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Very interesting posts!!! I am just very thankful that I have little to no side effects from my IVIG. Only a headache occasionally after the infusion which I get every 5 to six weeks.
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I just recently found lambert eaton new & I am still reading all of the different topics. I am currently awaiting a final diagnosis for LEMS. Everything that I have read of the LEMS patients experiences really hits home with me. Interestingly, I have been on IVIG for a little over a year now but not for LEMS. I was tentatively diagnosed with a form of polymyositis so my doctor agreed to let me try IVIG. From my research I was pretty sure I did not have polymyositis but I knew there were many other autoimmune diseases out there that IVIG would treat. I just found out in July that LEMS was one of them. The IVIG really seemed to help me for about 6 months- June to about Jan of this year. However, it only seemed to give me strength for 7-10days, then “wore” off. I started at 5 days every 4 weeks but by the 3rd week I was Dragging. The 1st couple of infusions were rough though because they did not hydrate me with saline pre & post-they had the flow rate too high for me, & my arms were reacting to the catheters being left in. My arms would get red streaks about an inch above where the IV stick was, then slowly the rednesss would spread out to oval patches. Because Benadryl would take the redness & warmth down, we knew it was a histamine reaction but if not controlled my arms would swell. I, like RDT, also have hereditary angioedema, which when I read above was very surprised. It is very rare! What I discovered during my research is that IVIG activates the classical complement system. HAE patients have low C1-inhibitor. We infuse by IV or do SubQ for C1-inhibitor. If I didn’t get the histamine reaction under control by cortizone cream or prednisone, then the HAE would take over. I have a Wonderful infusion nurse & she worked with me to get the correct pre-meds, the proper flow rate for me & timing of the IG. I now get my dose in 1-day every 2 weeks. I now have no problem with the IVIG. BUT as a patient you have to be REALLY proactive & do your research. If I would have educated myself on how IVIG should be administered & the proper premeds, I could have prevented some bad reactions the 1st 2 times. IVIG now doesn’t seem to be as effective as it was at first .So now I am waiting to get an “official” LEMS diagnosis so that I can try Firdapse. I did have to increase my prophylactic dose of C1-inh tho. I’m not sure if RDT above is also on an HAE drug. There are many options now & I hope that she can investigate them.
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Good luck with your quest for a diagnosis! IVIG has been most impactful in my treatment plan for LEMS. Firdapse is in there too, so I hope, with a diagnosis, you can discuss this with your neurologist to do what’s best! Good luck!
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I’m so glad you found us!
I’m sorry to hear that IVIG only gave you short term relief. What dosage do you receive if you don’t mind me asking. Many other illnesses do use IVIG as treatment like you said, but LEMS requires a higher dosage of IVIG compared to many others. The recommendation for LEMS is to get 1mg of IVIG per kilogram of weight for two days in a row. Is that what you’ve been receiving? If not, that may be why you are having such a short period of relief.
That’s very interesting about IVIG activating the complement system! Both of my complement levels run low, but my rheumatologist has told me not to be too worried about this. Honestly, it’s not something I’ve done much research on because my symptoms are mostly controlled at this time.
I completely agree with your approach to being proactive and doing your own research! I wish doctors would warn you more adequately about the symptoms IVIG commonly causes or the pre-medication regimen. I remember having to push hard to get saline pre and post infusion when I started IVIG several years ago.
What is your next step in waiting for your LEMS diagnosis? Please keep us updated. I hope you can get your official diagnosis soon!
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“The standard” dose for myositis patients is 2mg/kg, It was originally this amount over 4-5 days every 4 weeks. So that is a whole 1mg more than what you stated for LEMS. I eventually got it down to doing the same amount but for 1 day every 2 weeks. My nurse had to start a new IV every time since my arms would NOT tolerate leaving the catheter in, so that is why I opted to do 1/2 the dose in 1 day. I split the month because IG seemed to only last for 7-10days. I figured I would not run out of steam so much if the IVIG was every 2 weeks. The shorter intervals between doses seems to help a bit. To control the reactions on the arms I pre-med the day before the infusion with histamine receptor blockers & 20mg oral prednisone. Histamine has 2 receptors, type 1 & type 2. Research has shown that when someone has a reaction, it is better controlled by using both H1& H2. H1 blockers are Benadryl, Zyrtec, Clariton & weirdly H2 blockers are some of the older heartburn medicines. I take zyrtec the night before and cimetidine, which is Tagment HB, the morning of. Then the day of the IVIG, I take 650 mg Tylenol, I get 500ml saline pre & post, 20mg Solu-medrol (a type of steroid) pre& post. I also do 1500IU Berinert, which is human C1-inhibator, pre-IG. With this protocol, I have controlled all the IG side effects & have controlled the HAE attacks.The real key to the headaches was the 500ml saline pre&post. My nurse also warms it because the cold saline was making my arm ache. The only problem is, I don’t seem to be stopping the progression of the weakness as much. Granted, before the pandemic hit, I was moving a LOT more. I was doing strength training 3x a week, yoga at least one time, massage and accupunture. I think the lack of all of these other things has hurt me. Actually I know it has. Movement is MEDICINE.
Anyway, that is my probably too long of an answer. But my gut really tells me it’s LEMS. Just the way my muscles react once I “wake” them up it the main reason. That is how I eventually stumbled on this forum. I googled activation potentiation trying to figure out why the second set on the weight machine was most always better than the 1st. But I could NOT keep the muscle or gain strength. It was very confusing & frustrating to me. My trainer was also confused. But LEMS explains it all. Now I just have to get the correct combo of drugs.
You mention that both of your complement levels run low. Just to make sure that we are talking about the same thing. There are nine major complement proteins, which are labeled C1 through C9. In hereditary angioedema, I have very low C1-inhibitor and low C4. Other diseases may show low levels of some of the other proteins. Low C4 may point to lupus or RA. Some people have low C3 which leads to all sorts of problems.
I am currently awaiting the results of a whole exome sequencing [WES] ordered by a doctor at the Mayo clinic. There are some congenital myasthenic syndromes that mimic LEMS which she is looking for. The treatment depends on where the problem lies in the chemical magic that goes on at the neuromuscular junction. I tested positive for the voltage gated calcium channel[VGCC] autoimmune antibodies but she said that IVIG can give false positives for autoimmune antibodies. [I researched that and darn it looks like it might be true] My EMG was abnormal but did not show the “normal” LEMS CMAP. However, she said that my IVIG could be partially treating the LEMS.
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Sorry that my last message was unclear, it sounds like we receive the same dosage of IVIG. I receive 2mg/kg but it is spread up into 2 days, so I get 1mg/kg per day for 2 days consecutively. I receive my IVIG every four weeks and I can feel a decrease in it’s effectiveness usually by the tail end of the 3rd week after treatment. I’m glad you have found a pre-medication regimen that works for you! My pre-medication regimen is pretty similar aside from the Berinert, but I also get 50mg Iv Benadryl. I also take allegra daily. Like you, I also receive saline pre and post infusion, along with solumedrol and Tylenol.
Have you considered getting a mediport? I had a lot of the issues you are describing with your arms during and post infusion prior to getting my port. I also was an incredibly difficult stick and it was getting harder every month for me to get an IV. My port has made the process smooth and has really decreased the complications I experience.
Sounds like you may be in the medical field? I’m a nurse still currently working full time!
Sounds like you are quite active like myself, I am also very into yoga.
I’m so glad you stumbled upon us! Do you currently take any other medications for LEMS? Most physicians also prescribe Mestinon and Firdapse or Ruzurgi. If you are not already on either or both of these, I definitely recommend asking about them!
Thanks for clarifying about the complements. Both my c3 and c4 run low. I have several other comorbid autoimmune issues. Right now my rheumatologist has labeled it as “undifferentiated connective tissue disorder” although I have antibodies for Lupus and Sjorens and some symptoms of both. I also have Hashimoto’s thyroiditis. I don’t believe I have had the rest of the complement levels tested before. Do you also have lupus?
That whole exome sequencing sounds fascinating! I would love to hear more about that and the results when you get them if you don’t mind sharing! Your IVIG could definitely be partially treating the LEMS. I’ve also been told that IVIG can “skew” the results of some antibody test but I’m not sure how true that may be.
I hope you will get some answers soon and I look forward to hearing more about them.
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Thanks for all of the info you have shared. I’m glad the Lambert-Eaton News has been helpful for you. Like @pricewool and @ashleygregory757, I’ve had lots of experience with IVIG as well. IVIG definitely helped hugely in managing my LEMS symptoms. I described more about that in my column: IVIG is a Key to My Success with LEMS. The 3 week success window is very common, and that’s due to the 21 day half-life of the product. Many LEMS and MG patients feel that drop and some even change to having their infusions every 3rd week because of it.
I had a very difficult time getting IV pokes, but I refused to keep the IV catheter in overnight because the product is just too tough on the veins because it is very thick and infuses over a long period of time. My veins would blow the next day before the next infusion was complete so I would deal with difficult pokes for each day of infusing.
This past January I opted to switch to subcutaneous infusions that I can do at home on my own. It was either that or get a port; and my side effect profile was pretty drastic so my highs and lows on IVIG were extreme. I was ready to try for something with an easier side effect profile and I haven’t been disappointed! I’ve had great success on Hizentra and have written a couple of columns about that.
I have 12 More Days a Month Thanks to Subcutaneous Treatment
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Reflecting on My First Month on Hizentra
Doing the autoimmune dosing via sub cutaneous treatment is relatively new (it was originally indicated for primary immunodeficiency patients) so getting insurance approval can be tricky. However, I’m not the first LEMS patient I know that has gone the SubQ route and there are more that have recently started- so it is catching on.
In October I’ll be doing a follow up column in regards to how Hizentra has been for me and managing my LEMS. I recently had another VGCC antibody test done and in order to get a clear result, it had to be 6 weeks after my last treatment. In order to get a true result for an EMG 6 weeks post IVIG is also recommended.
Good luck with all of your testing and looking for answers. Unfortunately, once you have one autoimmune disease, others like to join the club. However, you’ve found a great source of support here in our Forums and we are happy to have you with us!
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