Author Topic: Running out of options?  (Read 5829 times)

mistyrain

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Re: Running out of options?
« Reply #15 on: November 18, 2013, 12:45:31 PM »
Carolina:

This professional question and answer article may be of help to you:

Avoiding Adverse Events with IVIG

"What are some of the serious adverse reactions that can occur as a result of IVIG use?"


written by:

Jerry Siegel, PharmD, FASHP, is the former senior director for pharmaceutical services at The Ohio State University Medical Center, where he worked for over 35 years. He graduated from The Ohio State University College of Pharmacy with both his BS and PharmD. Jerry also served as assistant dean of medical center affairs at The Ohio State University College of Pharmacy. He remains clinical associate professor at the College of Pharmacy there. Prior to this, Jerry worked as a clinical microbiologist and as a clinical pharmacist in transplantation and hematology/oncology before focusing on administration. He has lectured extensively on immunology, infectious disease, and pharmacoeconomics, and is a fellow of the American Society of Health-System Pharmacists (FASHP).

He provides a time lapse in determining what some of the adverse reactions might mean.


http://www.pppmag.com/article/677/February_2010_IVIG/Avoiding_Adverse_Events_with_IVIG/

I surely hope you will feel better soon.
Edith




Carolina

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Re: Running out of options?
« Reply #16 on: November 18, 2013, 01:14:31 PM »
Hi mistyrain,

I looked at the article and it covers most of the issues with IVIG, for sure.

I'm not having IVIG, which is a long IV administration of IgG, into a vein), usually lasting 4-6 hours, and done once a month.

I have a smaller amount of IgG infused into my body, under the skin, once a week.  And it takes about an hour and a half.  I can do it myself, with a syringe and pump and four lines with needles, infusing the product under my skin. It is called SubQ, for subcutaneous.

It appears that my reaction is probably to something in the way the IgG is prepared.  It takes about 1000 people donating blood, to make a month's worth of infusions for me.

The donations are extensively filtered and treated, to separate the IgG.  Other parts of the donated blood are used for other products.

The IgG is then suspended in a solution, as well.  So there are many parts of the processing that could involve something that my body is reacting to.

I think there may be one or two more possible products for me to try, for subcutaneous home infusion.

I could also try IVIG, if some of those products are formulated differently.

No one knows yet why I am having this problem.  And the condition I am treating is (CVID) relatively rare (1/50,000 people) and the treatment is outrageously expensive ($120,000-$150,000 a year).  So I don't have lots of options for different products.

The nice thing is that I haven't been sick this fall, and usually by now I'm on my second major illness.
But the hard part is that I've had extended flares every week for 10 weeks, with a break of about 3 weeks recently between products.

So the addition of IgG to my body is giving me better health.  But the reactions make continuing with the infusions impossible.

Most people have these infusions without problems, as the doctor said in that article.

I wish I could be more like most people!

Hugs,  Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

mistyrain

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Re: Running out of options?
« Reply #17 on: November 18, 2013, 01:22:17 PM »
Ok Elaine: I am getting my education - thanks for the explanation.  It doesn't seem right that you should have so many problems, and hopefully they can come up with better explanations when it is SubQ.  All my very best to you - how very frustrating after the good attitute you have had for such a long time.
Edith

anita

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Re: Running out of options?
« Reply #18 on: November 18, 2013, 06:16:57 PM »
I'd be interested in hearing from others here that get IgG (whether SubQ or IV), but in my experience over 9 years from 1997-2006 and in the last 6 months, MOST people have some sort of reaction (even if tolerable).  Fatigue, weakness and headache top the list.  Actually, I knew very few people that did not have a reaction. 

For example, of the four people posting on this thread alone that have had IgG, ALL of them have had a reaction (Elaine, Gurs, Warmwaters, and myself).  I haven't seen any post here where someone had NO problem.  I actually have significant headache, weakness, fatigue, and quite annoying/bothersome pharyngolarynegeal pain...BUT my infection problems are far greater then the symptoms I endure for 3-4 days each month after infusion.

I really don't think it's the product in your case, Elaine...only because you have itching with everything.  I'm hoping your immunologist has some ideas about why you have an uncommon itching reaction to this (and everything else).  If you can get to the bottom of your itching reactions to everything, then you probably can find a way to take IgG without a problem.

I completely agree with you that it must have something to do with autoimmune reaction.  I believe my very unusual severe reactions (mucosal/airway blisters) to ALL antibiotics is the same thing...autoimmune.  The pharyngolarynegeal pain reaction is something I get with both antibiotics and IVIG.  It's quite uncomfortable, but must have something to do with my immune system response, since it does it with both.

Are you feeling better at all?  Has it subsided?
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Carolina

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Re: Running out of options?
« Reply #19 on: November 18, 2013, 07:13:49 PM »
Yes, Anita,the reaction has subsided.  I feel pretty good!

I had three good weeks after the last infusion of Hizentra and before this first infuse of Gammagard.

And the first reaction to the Gammagard, which was infused on Thursday, the 14th was not that bad, and only lasted about 24 hours really.

That's how the reaction started with the Hizentra, and then the reaction just kept increasing in strength and length.

All the opioids have the same reaction.  But only for a short period.  The thing that I find interesting is that I wonder if it is the ACTION of the new Gammaglobulin in my system…..it is delayed by two days, at least, after the infusion, before I start getting symptoms.

With the opioids the reaction happens as soon as I take them, and stops when I stop taking them. 

I really think it is a reaction to the foreign Gammaglobulin, or else something included with the GG that is in the infusion, left from the donors.   The part that is confusing is that the reaction is so delayed.

That's why the idea of the Herxheimer reaction makes some sense.  But then I wouldn't think that the reaction would INCREASE with each infusion.  I mean the infused GG would be killing off long term bacteria in decreasing amounts, not increasing with each infusion.

And you are right, I think most people are affected by the IV process, perhaps more than the by the subcutaneous process.

I looked at a website the compares the two: IVIG and SubQ

SubQ:
Most common side effects are mild-to-moderate injection-site reactions; others include headache, vomiting, pain, and fatigue   

IVIG:
Most common side effects are those occurring throughout the body, called “systemic” side effects; headache, pain, nausea, fatigue, and chills are common

I don't think I have itching with everything, Anita.  Or maybe I don't understand what you mean by everything.

I take lots of meds and supplements with no problem.  It's only some meds and then this SubQ.

And the itching was really unpleasant, but the fatigue and depression are the most tiring.  I do itching and pain OK.

Although one of the symptoms of the Herxheimer reaction: Bone Pain, really hits home.  Even the long bones of my arms hurt.  I don't think my legs and feet hurt because of the nerve damage.  But I really don't know.

That is the heart and soul of the entire matter.  I just don't know.  I don't know why I have autoimmune symptoms and test negative for every condition.  Why I have reactions to some drugs and the IG infusions tried so far.

I don't know why I have profound peripheral neuropathy. My neurologist is now going to test me for a copper deficiency, among other things.  I suppose anything is possible.

Just feeling stumped.  And tired.

And so glad to have this forum to voice my concerns.  It is a joy.

Hugs, elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

gurs

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Re: Running out of options?
« Reply #20 on: November 19, 2013, 03:45:54 AM »
My doc told me that a lot of the IVIG reactions are normal..even that nasty meningitis type headache. He said its the combo of all
the antibodies in your body just fighting together..like a war inside..ha ha! makes sense.

Maybe a lower dose more frequent, another brand, etc..so many options to try I guess.

Glad your feeling a bit better. I know it took me a few months to get back on track. It seems those of us with autoimmune issues
have extreme trouble with medications and reactions. It makes it almost impossible to get any type of treatment? then what?

Soooooo frustrating..I cant take anything. Ive been through all the autoimmune meds just about...Imuran, metho, Arava, cellcept, cyclosporine, rituxan, IVIG....now what?

take care

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Carolina

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Re: Running out of options?
« Reply #21 on: November 19, 2013, 04:44:57 AM »
Gursie you can't take anything?

I woke up around 4 with the burning, itching and pain again.  So the reaction is still going on. 

Well, I rather suspect that I will be one of those.

I was just hoping for a real 'turn around' in both illness and possibly autoimmune flares.

In fact I think I need to take the Benadryl again, as the Claritin isn't doing the job on the itching and burning.

Pooh,

Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

anita

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Re: Running out of options?
« Reply #22 on: November 19, 2013, 06:47:22 AM »
I didn't mean 'everything' in the sense of everything...LOL  You just listed 8 different meds/items that caused you the itching reaction.  And I know there are quite a few posts here from the past about your itching (not even knowing what was causing it).  My point was simply that you have a significant 'itching' reaction to many substances...therefore look at the way your body responds in general (loosely, to everything else), not at the IgG. 

The type of itching you describe is NOT a common side-effect...or one I even see listed in the lists I've read.  I'm thinking, if you didn't have the itching with other things, you wouldn't have the itching with IgG.

Itching with opioids is very common...one of the most common.

The reaction I get with IVIG is delayed as well.  The headache starts late that night or next day and the pharyngolarynegeal pain is profound but doesn't start until day 2 or 3 and goes for several days.  Fatigue and weakness gets bad day 2 as well.    Also, I may do better one month and worse the next. 

If you notice, Gurs, myself and warmwaters had reactions AFTER the infusion, not during.  My understanding is that allergic reactions occur immediately, infusion related reactions occur after the fact.

The fact that yours subsided is the key and best news!!  I think you said it started Saturday.  When did it stop?  If you did not have the itching component, would you say the fatigue and headache were "tolerable' for the duration they lasted? 

Personally, my 2-4 days post infusion that are rough are worth it for just once a month...BUT I don't know if I would say that if I was doing it every week and had 2-4 days down time...that is up to 50% of the time...TOO MUCH in my book.   

Have you been in touch with the doctor, or are you going to do another infusion this Thursday?
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Carolina

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Re: Running out of options?
« Reply #23 on: November 19, 2013, 10:33:26 AM »
Oh Anita, I got it.

My reaction started Saturday, and I thought it was over, but I have low level itching and burning skin, fatigue and depression, and pain.

Only Benadryl will really help, but then I have to take a nap!

I wonder if heavily medicated IVIG, before and AFTER for a few days, would work?  I started on SubQ Hizentra in August.  Since I don't have trouble at the time of infusion, maybe if I just do IVIG and medicate like mad for the first week I would have three weeks without misery.

I haven't been SICK. I mean,that's wonderful!   

I see the Immunologist in early December.

I do know that the infusion company (Coram) is trying to consult with her how to proceed.  My guess is that I won't get another infusion this week.  It was supposed to be tomorrow, but here is it Tuesday and I'm still in the reaction from last Thursday.

I hate it when the insides of  my ears itch and burn. 

And the depression isn't overwhelming, but it just dampens down my mood.  I feel like such a big baby complaining so much.

I just had such high hopes for this treatment.

What do YOU do now, Gursie, just get sick a lot?
sigh
Elaine
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Carolina

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Re: Running out of options?
« Reply #24 on: November 19, 2013, 11:26:13 AM »
Dear Angels,

So, my doctor is calling off the SubQ infusions 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
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

anita

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Re: Running out of options?
« Reply #25 on: November 19, 2013, 11:45:43 AM »
Well, sort of figured this would be the case.  I hope they choose to pre-medicate this time...with steroids, benadryl and tylenol.  That is the "standard" pre-med combo for IVIG.  I have never got it without steroids.

Something tells me you will still have the itching...which is actually the most concerning (because it's a direct sign of reaction).  Fatigue, headache etc is normal as long as not too severe.   

I have a question or two (or three--lol) about your itching.  Is it on the surface or down inside type itching??  Neuropathy can cause deep inside itching (kind where you cannot even reach to relieve).  Is this the type of (drive you nuts) itching you have?  Are the locations of the itching ( I noticed you mentioned inside ears) places you have had before (for other meds causes)?  Does it always burn where it itches?

I'd be interested in hearing all the places that start itching...and whether burning is in the same location at the same time.



52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Carolina

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Re: Running out of options?
« Reply #26 on: November 19, 2013, 12:39:04 PM »
Ahh Anita,

I PRE-MEDICATED with Tylenol and Benadryl for the subcutaneous infusions at home.  Every time.

Just no prednisone.  And I had NO PROBLEM at the time of infusion, anywhere, including the infusion sites.  No redness, no itching, no swelling to speak of even, with the Gammagard.

The itching is below the surface.  It is a stabbing sharp itch flashing all over  my body. Vulva, neck, head, face, etc.

Then my hands tingle constantly and burn.  The insides of my forearms, from the elbow down burn and itch.  My face burns and tingles, my lips buzz and tingle, my stomach and back are ok pretty much. My ears itch on the outsides, and sometimes deep inside.

My legs below the knees and my feet are pretty numb, and I only notice that the bottoms of my feet tingle very sharply once in a while.

My eyes burn and are red.  I have two levels of the stabbing itch, very deep and then a bit lighter towards the surface

All the while my face burns, rather  like a medium sunburn. My tongue tingles, it feels a bit like the start on the end of Novocain. My nose itches like an itchy nose, but not constantly.

I have a strong ability to block out most of it, most of the time.  I had SEVERE eczema as a a child, before Benadryl or PRednisone, so I can deal with this.  Severe eczema is scary because it weeps and bleeds, fluid drains from it, and you get crawling skin and like chills, but not from being sick.  UNTIL you get a secondary infection in the eczema and have boils all over your body, popping out.  I lived with that for 27 years.  So this is a walk in the park compared to that.

It's really the depression and profound fatigue that make it the hardest for me.  I know pain and itching seem worse, but I just sort of 'check out' with the other two symptoms.  I feel very sad that I flunked IgG treatments.  I am not optimistic about the IVIG.

Just now I have a terrible itch in my lips.  All of this while my ears are buzzing extra loudly, like several loud bee hives and tree frogs.

And my head aches.

Mostly I am very sad that I can NOT tolerate something that will help me.  I learned to live without any of the opioids, at least for the past 8 or 9 years.  Home from knee surgery on Tylenol, the same with hand surgery.

But this could keep me really healthy, and I can't do it.  I don't get any diagnoses from my autoimmune tests, and yet my body is CLEARLY playing havoc with the IgG.

Because of the depression I just want to whine!  And that is so NOT ME.   

Pooh,

Elaine




« Last Edit: November 19, 2013, 12:40:42 PM by Carolina »
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

anita

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Re: Running out of options?
« Reply #27 on: November 19, 2013, 05:25:43 PM »
Using steroids has nothing to do with whether you have problems during the infusion.  It is to help avert reactions period...and most reactions come after the fact not during.

It is not oral prednisone that is given.  It is IV solu-medrol or dexamethazone.  Since you are going to IVIG, you should inquire about this...especially since you have already had reactions to SubQ.

It really sounds like your itching might be neurological.  Have you ever discussed it with your Duke neurologist?  Does he know that you have this type of itching? 

I know you have taken a lot of benadryl over the years.  Is your dose higher then 25 or 50 mg?  Long term use of benadryl is known to be associated with depression.  Do you notice it being worse (the depression) after taking it?

I don't know about IVIG causing depression. 

Frankly, you have every reason to be depressed with the stress in your life and struggles to just get through these treatments so you can possibly feel better.  It must be very frustrating and therefore depressing.

I will be keeping your in thought that the IVIG goes well.   Any idea when it will be done?
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

gurs

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Re: Running out of options?
« Reply #28 on: November 20, 2013, 03:45:12 AM »
In the meantime Carolina, I would ask the doc for some prednisone or Medrol..I know the Medrol 4mg tabs really helped me get
through the side effects etc. Prednisone did nothing???

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Carolina

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Re: Running out of options?
« Reply #29 on: November 20, 2013, 05:26:04 AM »
Ah Anita,

The depression just comes with the flare, and goes with it, too.  It has been interesting to watch it start as the other symptoms (profound fatigue, pain, itching/burning/skin skin) began, and then leave when the flare is over!

I am not a depressed person by nature.  I take Cymbalta mainly to manage the pain of my osteoarthritis and Peripheral Neuropathy.

I'm sure you've seen the extensive list of things that go along with autoimmune conditions.  For me, depression is just part of the flare.  And part of this reaction to the IgG infusions.

The doctor wants to try the IVIG with the steroid administered IV, as well.  That really might help!

My itching might be neurological, but I don't know what that would mean in terms of treatment or cause.

I just got the email from the doctor that she will recommend IVIG with steroids.  It took over a month to begin Gammagard when I stopped the Hizentra.  So I rather expect it might be  in January 2014.

I just want to get over this flare.  I took three Benadryl at 4 am, and am tinging, itching and miserable now, 4 hours later.

Gursie, I should ask for Prednisone or Medrol now   I'm always reluctant to ask for meds.  Weird eh?

I'd like to get some exercise today, even with the whole thing of my side effects. I'm sure I"d feel better.

Hugs, Elaine



Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3