Hizentra TO Gammagard: will it help?

[elained]

Hi Phoenix friends,

I've been infusing 10 grams of Hizentra (a 20% product here in the USA) Sub cut weekly for 8 infusions. And I've had increasing unpleasant symptoms, NOT at the time of infusion, strangely enough, but about two or three days later. The symptoms are like an inflammatory response: profound fatigue, pain, depression and itching burning and tingling skin, lips, tongue, palms of my hands.

Also of course like an allergic reaction. So the decision to stop my Hizentra infusions and switch to Gammagard has been made. Of course, since I'm in the USA, it is the insurance company that will decide what and when anything is possible. Weird, right?

My last infusion was 10 days or more ago, but I'm still having the last of the symptoms, and taking the antihistamines to try to reduce the itching and burning.

I know the infusion products probably have different names in the UK. I just wonder who else has had to change, and how that worked out. Part of me is a bit tired of all of this, mostly the part that's depressed.

I know the reaction, the inflammation, is causing the depression, but everything seems a bit bleak..... yep, that's the depression for sure.

Basically I'm pretty up beat. OK, I just need patience and perseverance,

Hugs, Elaine

[s162216]

Hi Elaine,

The products are named the same in the UK; IgG preparations are notoriously patient selective due to the different purification techniques, stabilisers, buffers etc that are used in each product type. A lot of patients will be fine on their initial one (I've been having IV Privigen ever since I was diagnosed 3 years ago), but some may have to try several ones before they get the one that 'suits' them best.

I hope that your feeling alright and remember to get in touch with your immunologist, nurse etc if they don't go soon or get worst.

Sam

[elained]

Thanks Boss, aka Sam,

I've been talking with her (well, emailing) and I also have two Epi Pens and a vial of Benadryl liquid on hand. And we live 5 minutes from a major hospital so basically I have my bases covered.

Oh my husband is also a research immunologist (yeah, irony upon irony) who did organ transplants in medium sized animals (dogs and goats) for his research. He could do an emergency tracheotomy for me if push came to shove. But of course it won't.

Oh, and he HATES talking about my immune deficiency. He wants me to read an immunology text book first. He teaches immunology, Sigh. So I do lots of online research and talk to the knowledgeable people here.

I think he just hates that's I have this deficiency, and he thinks my interest in it is obsessive. Since it was first diagnosed as CVID in March, and first treated at the end of August, I think I'm just playing 'catch up'.

But we've been married 51 years, and I'm not changing his mind! Nor he mine, for that matter.

Hugs, Elaine

[john]

Strangely enough I was speaking to a young guy at the clinic on Wednesday, who has just changed onto subcut, and he was telling me about itching that lasts for three days after each infusion! I grabbed John, our specialist nurse and asked him if a product change was in order and he surprised me by saying that skin itching was VERY common, and that I was fairly lucky not to get it myself!!!
Our partners often don't like the idea that we are unwell, and sometimes deal with it by appearing to be uncaring and unsympathetic. If you guys are st ill together after all those years it shows you he DOES care, and you know that he will be there for you!
I get tetchy and cross with Sue, and immediately regret it, and blame it onto my PID or meds. She gets hurt that I can seem so unkind, but always forgives me, after all we've been togetherr for a heck of a long time too! Hang on in there, keep playing our dratted games, and offload to us when you need to...Uncle John's agony page !!

[s162216]

About the only side effects that I get from my IVIG is tiredness afterwards (which most get), and oddly I actually get sort of like 'motion sickness' for a while from it. I could never work out why I almost never got headaches when I had it at the QMC, yet when I have it at Addenbrookes I always get headaches. Thinking about it I didn't have an hour and a half bus journey back from the QMC, which I do every time from Addenbrookes, and on occasions where I had to go anywhere in the few hours after having it at the QMC I would get headaches as well.

Its nothing exactly serious and, only lasts until the next day or so, so I can live with it.

Sam

[elained]

I could manage a sort of regular side effect, but this one was increasing in intensity and length, so it was looking like it would spill into bad territory.

Heavens, we all manage all sorts of things: we just find a "new normal' and ride with it, until the next wave sweeps something over us!

We're adapters and survivors, for sure.

Hugs, Elaine

[elained]

Just heard that the Gammagard was approved, waiting for approval of the nurse to get me started. Wouldn't you think that would be a given? Sigh.
Last infusion was October 8. And as bad as my reaction to Hizentra WAS by the end, the interesting thing to me is that I haven't been SICK ONCE with an infection this Fall. And Last year I was well into my second 3 week misery.

So bring it on. Who knew I would be eager for IgG and Sub Cut? How far I've come. With so much help from all of you.

Hugs, Elaine. (new picture taken by my own iPhone this week! I think my nose is taking over my face as I age. Oh well)

[glowing]

Fingers crossed it suits you better.

Glo x

[john]

God Luck Elaine!!

[elained]

Everything approved, starting next week (Monday is a holiday, and I got the message at 7 pm, so I imagine it won't be until Thursday or so).

Onwards and upwards!

Elaine

[elained]

First infusion this morning. It's twice the volume, but only about 1.5 times the infusing time, because Gammagard 10% isn't as thick as Hizentra 20%.

Everything went well, No burning eyes ( like the first time with Hizentra), and much much smaller bumps at the infusion site even with 2x volume.

So, I'm on my way again.

Had the EMG yesterday (Nerve conduction study) and my peripheral neuropathy is the same as it was 3.5 years ago. The neurologist is totally stumped as to why I have it.

So I'm going to have some more blood tests just to rule out weird thing like heavy metal poisoning. But since my hands and arms aren't affected, that's unlikely.

I think it was either the antibiotic I took, or is caused by my autoimmune condition(s).

Anyway, I'm getting 'used to it', and am just relieved that it turns out not to be progressing, which was my original concern. We didn't know why I had it, so we didn't know what it would do in the future.

Back to the GAMES!

Hugs, Elaine

[glowing]

Fingers crossed that all stays well for you this time.

Glo x

[john]

I'm very pleased your first gammagard infusion has gone wel Elaine, and I hope it soon has you feeling better.
The neuropathy, well mine is as misterious as yours, it came, it hasn't progressed and apart from treating it as diabetes, no_one really seems to have a clue!
At least the games are doing their stuff and keeping us amused and hopefully sharpening our brains, so, back to the games, and may the best MAN win!

[elained]

Dear Support Angels,

Well, sigh.

Very tired yesterday, wondered why. Fingers hurt.

Woke up at 4 AM this morning itching, itching, headache. Took Claritan, no help. Took Benadryl and Tylenol. Back to sleep.

Waiting to see what lies ahead when the Benadryl wears off.

It might be possible to have a reaction and then have it subside as time goes on, I hope.

The Hizentra reaction increased with each infusion.

How many products do I have left to try, I wonder?

Even with the Benadryl I itch slightly, and my face tingles. NOT A GOOD SIGN.

My system just 'does not play well with others;' Or even with ME.

Hugs, Elaine

[john]

OK, here's my subcut experiences so far,
Fingers and other joints hurt from time to time, my right hand is killing me as I write this, I had my last infusion on Tuesday!
Itchy, I get really itchy skin on my face and scalp for a day or two after infusing? Haven't tried an anti histamine, it's a bearable itch that I just scratch!
I do believe with all new medications that I have to give it time before it's happy with me anfd I'm happy with it. Hang on in there Elaine!!!
There are plenty of other manufacturers products to try, so don't despair,
Clue to my last music quiz, Paul Simon!

[elained]

So, my doctor is calling off the Sub Cut, and going to try IVIG.

I think I just reject the foreign IgG. But we'll give it one more try.

That's what my doctor told the Specialty Pharmacist at the Infusion company.

That I"m probably just rejecting IgG, itself.

Pooh.

Elaine

[glowing]

Will you be able to treat yourself at home with ivig? At my hospital they don't allow it but I know there are some people who do ivig at home. Are you very disappointed? Hope it all goes better for you.

Glo x

[elained]

Hi Glo, I think it will be in an infusion center to start.

I'm not very optimistic at this point. But what do I know? As soon as the Benadryl wears off the itching starts again. And when I take the Benadryl I get really sleepy. But the Claritan won't touch it, so it has to be Benadryl.

Yes, I'm disappointed for sure. Maybe if I can overcome the reaction one way or another, I can go back to Sub cut.

My immune system is just very uncooperative it seems!

Hugs, Elaine

[perfectlypeg]

Elaine, I have tried to follow you on this topic but don't know exactly where you are at. I have pretty much exactly the same results as you have had, at the same rate.
I also tried the Gammaguard to no benefit. So I went back to the Hizentra. I didn't have low IgA at the beginning, just low IgG. but after twelve years I now also have low IgA and low IgM as well. I wonder if it is just an effect of the disease. Part of the process in a way? Maybe the inflammatory process eventually causes all of the immuneglobulins to become deficient? I'm just guessing.
I also assume that the subcultaneous serum is slow release over the course of the week long infusion period. That would account for the side effects to be extended during that period rather than immediately during the infusion. The only symptom that I have immediately is a stinging at the injection site when I begin the infusion. Otherwise my side effects don't begin until about the 36 hour mark.
Now when I was participating in the IV infusion my side effects began immediately when the needle was inserted. When the serum hit my veins I would become rendered unconscious and would not be able to be roused until they would remove the IV. The nurses told me that I was their only patient that lost consciousness during the infusion, but I am sure that someone else also had this side effect somewhere. During the IV treatment I also would enter into a "sleep fest" for three days afterwards by which I would sleep for three days which I would not wake up to participate into regular daily activities. I had hoped that the subcultaneous treatment would alieveate this side effect and it has not been quite as severe, but it has not completely gone away. I sleep for only a day or two and am just dragging arse for another couple of days. But this is every week instead of every month. The only benefit of receiving the gamma globulin treatment and it makes the treatment worthwhile is that it keeps me out of the hospital. I haven't been hospitalized since being on the protocol. Before being on it I was hospitalized at least twice a year, so it does make a difference. I still find I am on a lot of antibiotics though for sinus infections and UTI. If only I could find a decent immunologist that actually knew their stuff, I'd be in hog heaven. I find it amazing at the amount of doctors who practice medicine that don't know beans about the field in which they preach. It is actually shocking. If you were in business, you'd be run out of town.
perfectlypeg

[elained]

Oh dear Perfectlypeg,

I didn't see your response until today. Your remarks are fascinating! I have low IgG and IgM, but my IgA is right in the middle of normal.
I have only been treating my CVID starting at the end of August.

I haven't had IVIG, but am supposed to try the Gammagard as IVIG when it is approved. Administered with prednisone.

I have NOT been sick since I started the Sub Cut at the end of August, and usually I've had at least two illnesses by now.

BUT, I've been miserable with continuous and increasing reactions: Profound fatigue, pain, depression and intense itching/burning/tingling all over my body, especially face and hands and forearms.

I am very old to be starting all of this, 71. And have a couple of other conditions, since I have the autoimmune conditions that go along with CVID in many cases.

I am lucky to have a marvelous research Immunologist on the faculty at Duke University here in our area. Her area of research is CVID, and she really wants me to succeed with IgG treatments.

So I will keep trying. I'm willing, but not highly optimistic at this point, I have to say!

Keep me posted on your progress. My reaction to Hizentra kept getting longer and stronger until it lasted through one infusion to the next….and was impossible to deal with.

I however, have not been hospitalized with infections the way most people have, so I'm perhaps not as motivated!

Hugs, Elaine