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Gamma globulin

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Rrrr, Feb 18, 2014.

  1. Ema

    Ema Senior Member

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    This is who my two friends see for their Hizentra.

    He is also having them do the daily or multiple weekly infusions, rather than one big lump.
  2. Rrrr

    Rrrr Senior Member

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    @Ema, do you know how they are doing on the hizentra?
  3. Ema

    Ema Senior Member

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    I didn't see any drop in my viral titers until cidofovir. And then only HHV6.

    But my subclass 3 is still low and many think that is the one responsible for viral infections. Supposedly, once that comes back up into range, that is a sign that the infection is coming under control.

    It must take a long time though (or higher doses than we have been using). My subclass 3 came up from 30 to 40...(bottom of the range is 41-129) after one YEAR of dosing at 10-12g/week. I know others have had similar experiences.

    I've never had my NK function tested. They are always high on an abs count but I know that doesn't say anything about function. I need to find this test and see where they do it.

    @Rrrr, I also use Accredo and have been extremely satisfied with the customer service.
  4. Ema

    Ema Senior Member

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    One is doing quite well. She had Lyme, no viral infections low in SC1 and 3. She went from daily seizures, unable to shower etc to getting a PhD and now has a family and a full time tenured teaching position at a university. That took about a decade though.

    She's been doing Hizentra for almost two years and her subclass 3 is finally now at the bottom of the range as well. She fights infections continually but is very active and lives a normal life for the most part. She also still takes prophylactic abx though.

    My other friend has Lyme/Babs/EBV and a totally different subclass profile (low in 1 and 2) and has been only on it for about 6 months. She's had more trouble working up to a therapeutic dose so her levels are still under range and she is still pretty sick but has also only just started treatment for the babs.
    Hanna and Rrrr like this.
  5. Ninan

    Ninan Senior Member

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    I tried gammaglobulin last summer. Just one shot and I crashed the day after. Not a catastrophic crash but it took me a week or two to get back to where I was before. Can't say for sure it was because of that but I think so. Had the chance to continue but I was scared I'd get worse. I usually react badly to anything that strengthens my immune system.
    heapsreal likes this.
  6. Rrrr

    Rrrr Senior Member

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    @Ninan, i'm so sorry to hear about your bad reaction. can you tell us the brand and the amount you were given for that first shot, as well as how the shot was administered (subq, intramuscular, IV)?

    i am thinking that many doctors give too high a dose for the first dose for ME/CFS patients.
  7. Ninan

    Ninan Senior Member

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    It was Beriglobin 160 mg/ml, 2 ml intramuscular.
  8. Ema

    Ema Senior Member

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    It also may depend on your IgA level.

    Those with low IgA may have a reaction if they have antibodies against IgA that those with normal levels usually do not. The risk is relatively rare though which probably isn't much consolation if you have one.

    @Rrrr, FWIW, my IgA level was essentially the same as yours at 126.
  9. Rrrr

    Rrrr Senior Member

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    In case anyone is interested here is this published paper from 2010 stating that subq shots of gamma globulin are preferred to infusion by pump. I think I'm allowed to post the abstract, right? If not, please tell me and then I will take it off. For those who want to see the full study, please contact me via private message.
    ________

    Published in the
    Journal of Clinical Immunology (2010) 30:301–307 DOI 10.1007/s10875-009-9352-2

    Subcutaneous Immunoglobulin Therapy by Rapid Push
    is Preferred to Infusion by Pump: A Retrospective Analysis

    by Ralph Shapiro

    Received: 19 August 2009 / Accepted: 20 November 2009 / Published online: 15 January 2010 # Springer Science+Business Media, LLC 2010

    Abstract

    Background Subcutaneous immunoglobulin (SCIg) re- placement therapy for primary immune deficiency disease (PIDD) is a safe, effective, and convenient alternative to intravenous Ig (IVIg) therapy. Although SCIg is typically administered weekly by infusion pump, administration by a rapid push technique may provide a greater degree of convenience. Rapid push administration has been an option at the author's clinic for several years. We report experience with a cohort of patients given a choice between rapid push and standard pump administration.

    Methods This was a retrospective chart review of PIDD patients at a single site who initiated treatment with SCIg (16% solution) therapy between January 1, 2006 and April 1, 2008. Patients selected either infusion pump or rapid push administration after receiving a description and demonstration of each method and training for home self- administration. Demographics, dose, adverse events (AEs), serum immunoglobulin G (IgG) levels, and therapy disposition (discontinued, switched technique) were recorded on a standardized data collection form.

    Results Charts for 104 patients (45 male, 59 female; mean age, 21.1 years; range, 0.5–67.6 years; SD = 17.9 years) were reviewed. Seventy-four patients (71%) chose rapid push. Mean SCIg dose was 32.11 g/month (range, 1.92– 89.6 g/month; SD = 8.3 g/month) split into an average of 3.11 times per week. Volume per site ranged from 3 to 20 mL, typically administered over 5–20 min and at one site. Mean serum IgG levels did not differ significantly by administration method: pump, 1,153.06 mg/dL (SD=240.8); rapid push, 1,225.8 mg/dL (SD = 299.8). Local infusion-site reactions were the most common AEs and were experienced by one third of patients in each group. Only two patients discontinued therapy because of an AE. Conclusion The results suggest that PIDD patients prefer SCIg administered as a rapid push rather than as conven- tional pump infusion. Serum IgG levels were comparable between methods, and safety was similar, if not slightly better, with rapid push. Rapid push offers the potential for even greater convenience than the pump infusion technique, although these results should be confirmed in prospective studies.

    R. Shapiro (*)
    Midwest Immunology Clinic,
    15700 37th Avenue North, Suite #110, Plymouth, MN 55446-3399, USA e-mail: rsshapi@hotmail.com
    heapsreal likes this.
  10. Rrrr

    Rrrr Senior Member

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    a quick update:

    i have now done two intramuscular shots (the first was 0.5 cc and the second was 2 cc) of a brand called GammaSTAN. i start a different brand, called GammaGARD, later this week -- and that will be the brand that i stick with.

    meanwhile, the two shots i already did left me with A LOT of cognitive problems. so i'll be hanging on tight for this ride!

    have others had cognitive issues with starting gamma globulin shots?
  11. Ema

    Ema Senior Member

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    I think they are saying that the average person infused approx 2.6g three times a week.

    It depends on the IgG product, but for Hizentra that would be more than 10mL.

    I just so happen to have tried that myself this last weekend. It took 4 (3mL - It's too thick to pull from the bottle with a syringe much larger in my experience) syringes and left a big nasty bruise where I apparently nicked a blood vessel on my 4th stick.

    I still think multi-week dosing is the way to go...but I sure hope their "rapid push" method involves a butterfly needle and not multiple syringes!
  12. Rrrr

    Rrrr Senior Member

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    yes, i think their rapid push method does involve a butterfly needle.

    i hear hizentra is twice as thick as gammaGARD. and harder to administer via "rapid push"

    for gammaGARD, the 1 gram per shot that i hope to do is 10 mL. that is a lot do do subq.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    you probably do this, but do u use a larger needle to draw up with and a smaller needle to inject with. Also if your withdrawing it from a pressurized type bottle, do u inject it with air first as this helps reverse the negative pressure in the bottle and alot easier to draw out??
  14. Ema

    Ema Senior Member

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    I only had 3mL syringes so that was what I used. A larger needle would surely have helped if I had had one.

    I did put the air in first but it was still really hard. I ended up warming it up a bit in my hands and that helped a little, but honestly, I'm so fast with the pump setup now after a year that it took longer to fill the syringes than it does for me to just use the pump.

    One of my friends that does multi-weekly admin uses the pump (she also has years of practice with it and is fast) and the other friend uses the butterfly and multiple syringes. Both will work just fine.

    I think honestly it is just a matter of preference and whether or not you find the whole pump setup intimidating. It looks intimidating at first because there are more parts involved but it actually boils down to about 4 steps.

    I should video it one day this week so people can see how quickly it can be done. But that really might be a boring video and would focus on my rear which might not be appropriate for the forum. :D

    @Rrrr, you should have better luck with Gammagard as it is much less viscous. But make sure to let it come fully up to room temperature before you try to work with it.

    The maximum you can typically put in one site is 20-25mL. So you should be fine with the butterfly...I'm actually planning to try it myself that way too at some point. I just will never do it with multiple syringes/sticks again!
    heapsreal likes this.
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Ema

    You can get BD Luer-lok syringes with no needle and then buy separate drawing and injecting needles as this type of syringe lets you swap them easily. I use their 3 ml syringe but the probably have larger ones.

    You probably know all about this though! ;)

    Sushi
  16. Ema

    Ema Senior Member

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    That's what I should have done but it was sort of a last minute decision to experiment.

    The supplies actually come with this white thick poker thingy that draws it all out really fast. I think it's called a spike. But I think it only fits the 60ml pump...

    Looks kind of like this.

    http://www.bbraunusa.com/service-la...US&s=0f4d2e4253887ed7b763d880305d3ba5&max=400
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  18. Ema

    Ema Senior Member

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    Hahaha. You take it off before you infuse. It's just to get the med out of the vial!!
  19. lartista

    lartista Senior Member

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    Hi there everyone and Rrr,
    I just had my meeting with Dr. Nancy Klimas this week. Since the last time I have seen her, I was diagnosed with CVID by another Immune specialist. Since I was off of Dr. Klimas' three drugs since Feb 2014, then my heart ablation April 2014, it is now one year off of all 3 drugs: Valtrex 3 g, LDN 4.5 mg and Imunovir. I started IV IGg treatments three times in the summer of 2013 and twice the winter of 2013/2014 in Colorado. Since I come back to Italy where I live, Italy would not do the treatment cause by their standards I did not have CVID. I waited to see what Dr. Klimas thought about all of this YES OR NO to CVID?... I was suprised.... she said "start the LDN and imunovir, skip the VALTREX and DO NOT DO the GcMAF". My third sister got estrogen type breast cancer and she said we don't need GcMAF getting any cancer rolling in you! Odd, no? So we shoudln't joke with this stuff.

    The first treatments which occurred every three weeks cost around $5000 to $7000 per treatment depending on the dosing. It was a fight at first with my Medicare supplemental plan but they did come through. My co-pay was 10%! So it would end up being $700 every three weeks! Yikes... I did it just to try it. Just the 5 or so treatments left me paying a co-pay of about several thousand dollars!

    Dr. Klimas is going to try to get her home health care company to work with my insurance. She is going to try to switch me to INJECTIONS. I watched the video and it scared me a bit... I will need time to adjust to the idea of doing it myself. Italy said I needed to be at 400 or below. Where as Dr. Klimas and Dr. Melamed did not agree because the healthy IGg range needed to be 800 to 1200 in Rome and I was 600. Then another test after getting a few treatments placed my IGg1 below the acceptable levels. Dr. Klimas said she saw right away the process Dr. Melamed did to find the CVID. So I will be getting her letter in this next week setting it all up...

    Rrrr, How is it going? Any negative reactions yet? I had one after this last treatment... all viruses got activated high, even ones I never had. Dr. Klimas did not think it was because of other people's antibodies but she feels it stressed my immune system some how and wants me pretreating with predisone... I think this is what Klimas may have been trying to say to me:
    http://www.nufactor.com/Blog/post/IVIG-Side-Effects-Immune-Globulin.aspx
    "When undergoing IVIG therapy, some mild side effects are expected. An infusion consists of large amounts of antibodies being infused at once. When infused at a higher concentration, you can exhibit an immune system response to those concentrated antibodies. That’s why premedications are orderedbefore your infusion and why increased oral hydration is very important."

    AT first, at the first three treatments, I felt CURED... its a stupid little game my mind plays on me... I even hiked in New Mexico and did so many things. No naps even! This was June 2013. Then 2 more treatments at Xmas and the following week the worst crash that has me down to a 2 to 4 on Dr. Martin Lerner's "Energy Index Point Scale". Klimas said it might be a reaction to the IV IGg and it triggering my viruses. I was shocked if I understood her correctly... the treatement may have done this relapse? So we shall pretreat with steriods and continue like planned...

    ANY ONE UNDERSTAND ALL THIS, CAUSE I DON'T But I love and adore Klimas... so I TRUST her with all my heart...
    Francesca
    Ema and heapsreal like this.
  20. Ema

    Ema Senior Member

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    @lartista, If Klimas is talking about getting you Hizentra (SCIG) to infuse (is that the video you watched?), you may not need to premedicate with steroids. Some do, but most do not.

    It infuses much more slowly into subQ than right into your veins and most people have fewer side effects with it that way.

    Have you asked Klimas about re-starting the antivirals in light of the new test results? Possibly the stress of everything (including the IVIG) has allowed your infections to re-activate?

    Hopefully her letter next week will be helpful in explaining her plan more fully!

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