Author Topic: Running out of options?  (Read 5873 times)

Carolina

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Running out of options?
« on: November 17, 2013, 06:10:19 AM »
Dear Angels,
 
Well, sigh.  How many products do I have left to try, I wonder?
 
My first infusion with Gammagard 10% Thursday morning, went well.  Thursday night and Friday night were fine.  I had a little itch in my nose on Saturday.  But then doesn't everyone get an itching nose?  And I was very tired on Saturday, wondered why.  Fingers hurt.  I went to sleep at 8:30.  EARLY for me.
 
AND THEN:  Woke up at 4 AM this morning  itching, itching, headache, ache all over.  Took Claritan, no help.  Took Benadryl and Tylenol.  Back to sleep.  Oh, no, this is not a good sign.
 
Waiting to see what lies ahead when the Benadryl wears off. But  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
 
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.
 
I will alert everyone today (my doctor, the specialist pharmacist, and my infusion nurse).  Might as well cut this off earlier rather than later.  But I would say to give it maybe another infusion? 
 
Hizentra is out, Gammagard 10% is looking 'iffy'.  What next?
 
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

Joe S.

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Re: Running out of options?
« Reply #1 on: November 17, 2013, 07:44:47 AM »
Before taking any new medication or supplement, check for interactions, side effects, and counter indications. If your doctor does not believe you, throw the PDR at him or her and tell them to learn about the drug before the prescribe it.
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finallyadx

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Re: Running out of options?
« Reply #2 on: November 17, 2013, 08:59:42 AM »
Elaine - so very sorry to hear you are struggling with the new treatment.  I will hope that the interaction is slight and improves with time and additional treatment.  If not, aren't there other medications?  And I apologize or asking - I truly do not know how many, if any more exist from what you have tried.  I am in the beginning stages of medication so my knowledge is lacking severely.

Be certain to call your dr and get checked out if it continues.

Sending positive thoughts and prayers your way.
Hugs.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

Carolina

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Re: Running out of options?
« Reply #3 on: November 17, 2013, 10:39:09 AM »
finalldx,

If you have chronic UTIs, take D-Mannose.

It works a charm.

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

finallyadx

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Re: Running out of options?
« Reply #4 on: November 17, 2013, 12:17:56 PM »
Thanks Elaine for the D-mannose info - I took it last night and one other time - it makes me feel funny...but I have strange reactions to medications and supplements sometime.  I will give it another try.  Thanks for the advice.

Sending healing thoughts your way that this medication works and the adverse reaction stops.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

SjoGirl

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Re: Running out of options?
« Reply #5 on: November 17, 2013, 12:43:37 PM »
So sorry. What are they giving you the med for?
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quietdynamics

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Re: Running out of options?
« Reply #6 on: November 17, 2013, 01:55:37 PM »
It is possible that your are experiencing Herxheimer. And in that case you just may have a 'winner'.

"...the price that must paid in order to get well
The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms. The important thing to note is that worsening symptoms do not indicate failure of the treatment in question; in fact, usually just the opposite."  posted by SF Mom, on the Neurotherapy forum.
 
Only time will tell. Then there is the possibility these symptoms have nothing to do with the med...rather start of a flare (hoping minor) or "something" else.

Dr. has your history, so we are only speculating along side you.  ;)

"... throw the PDR at him or her and tell them to learn about the drug before the prescribe it."

???   All things considered I am 99.999% sure "t's " were crossed and "i's" dotted to Rx this type of med for a patient and get it through insurance. AND then rechecked.

Drs. do not have a crystal ball to predict how a patient will respond to med...or have mild - severe reaction. If only even this part were that easy...I am sure patient and Dr. would love to not have juggles those complexities.  Add on other medical variables..., age, overall long term if any effects on the disease state absent Immunity ...quite the mix. And yes, there is the patient psychological state, regarding condtion/meds/ personality.

Gammagard 10% has a 43 pages on FDA site. Manufactures site it is 47 pages.
http://www.fda.gov/downloads/BiologicsBloodVaccines/BloodBloodProducts/ApprovedProducts/LicensedProductsBLAs/FractionatedPlasmaProducts/UCM070010.pdf

Hizentra has 32 pages on the FDA site.
 
Part 7...shows list of other IVIG (Various Brand names)...?
https://www.healthnet.com/static/general/unprotected/html/national/pa_guidelines/immunoglobulin_for_myasthenia_gravis_natl.html

CVID "Common Variable Immune Deficiency (CVID) is a frequently diagnosed immunodeficiency, especially in adults, characterized by low levels of serum immunoglobulins and antibodies, which causes an increased susceptibility to infection. While CVID is thought to be due to genetic defects, the exact cause of the disorder is unknown in the large majority of cases."
http://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/common-variable-immune-deficiency/

Brief overview of: Autoimmunity in Primary Immunodeficiency. 12 pgs. See end sect, on expectaions
http://primaryimmune.org/wp-content/uploads/2013/06/Chapter-28-Autoimmunityin-PrimaryImmunodeficiency.pdf

So I am going to be positive for a good outcome for you...you have notified the Dr/Nurse..try to rest.



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Carolina

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Re: Running out of options?
« Reply #7 on: November 17, 2013, 02:50:08 PM »
OMG quietdynamics!

Those are exactly my symptoms (and also the symptoms of a flare for me).  AND  I have NOT BEEN SICK this fall.  So my antibodies  are clearly stronger.

Here are the symptoms of 'Herxing" which is such a STRANGE term.  Like Hexing and Jerking or something weird.

The most common symptoms reported include increased fatigue, joint or muscle pain, skin rashes, photosensitivity, irritability, paresthesia, dizziness, sleep disturbances, asthenia, muscle cramps, night sweats, hypertension, hypotension, headaches (especially migraines) and swollen glands. Also reported are heavy perspiration, metallic taste in mouth, chills, nausea, bloating, constipation or diarrhea, low grade fever, heart palpitations, tachycardia, facial palsy, tinnitus, mental confusion, uncoordinated movement, pruritus, bone pain, flu-like syndrome, conjunctivitis and throat swelling.

Ok I'm gonna hang in there for this one.

I will ask my Immunologist if she knows about this.

I am dazed and amazed at the endless amounts of fantastic ideas and information that my Sjogren's Angels have for  me.

Hugs, Elaine
« Last Edit: November 17, 2013, 02:58:18 PM by Carolina »
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anita

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Re: Running out of options?
« Reply #8 on: November 17, 2013, 03:10:44 PM »
Quietdynamics comments are very interesting and I wonder if this is possible. 

I do see in the links that itching is NOT something common in adverse reactions for subQ administration...not even for site problems, which is not even what you are experiencing.  But you have always had some sort of itching reaction to most meds discussed if I remember...not just IgG.  Am I right?  You take a lot of benadryl...do you think your histamine triggers/sensors are out of whack?

The fatigue, headache etc are normal type reactions and should subside pretty quick. 

Gosh, I hope this works out for you.  Have they tried any steroid pre-med? 

I certainly understand your frustration.  I have a strange serious reaction to EVERY antibiotic (in every drug class there is).  I get fluid filled blisters on all mucus membranes (including down throat/airways).  No doctor knows why and they can't figure it out, but it happens with every antibiotic. 

Don't you get itching with other meds?  Which ones have caused this type reaction?


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 #9 on: November 17, 2013, 04:10:44 PM »
The opioids
Oral Estrogen
topical vaginal estrogen
sulfa
Emiron (Pentosan polysulfate sodium) which is a drug for IC, and a sulfate, so no surprise!
Lamictal
Tramadol
Topomax
(the last two I had itching, but once I realized a flare also caused itching, I'm not so sure about them).

Everything started with about the second infusion of Hizentra, and each week was stronger and lasted longer until it went right through the last infusion and lasted another 10 days.

At the TIME of infusion, nothing.  No itching infusion sites, no bumps that were red, nada.

I really gave Hizentra a shot, but when I was having such a long time of such awfulness (like a very very bad flare) I was ready to throw in the towel.

No steroid before the infusion.

Well, It could be the benadryl, I mean that I've taken too much?  I don't know.  I'm tired of it all.

Hugs, Elaine
« Last Edit: November 17, 2013, 04:33:02 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 #10 on: November 17, 2013, 05:05:19 PM »
I bet you are tired of it all.

You have had your share of "itching" from flares, meds...everything seems to cause you itching.  Until someone figures out why you have so much itching reactions to everything, I fear you'll have the same for other brands of IgG...whether subQ or IV.  I'm very interested in this Herxheimer and what your doctor has to say about it.  I have never heard of it, but it certainly seems to describe your symptoms.

Are you feeling any better tonight?  Has it subsided at all?
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

warmwaters

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Re: Running out of options?
« Reply #11 on: November 17, 2013, 05:06:19 PM »
If you feel concerned about the itching, etc., please get in touch with your doctors. If I remember correctly, you had problems with a different brand of IVIG?  And so, it would not be surprising to react to another brand. After all, you are intentionally taking the antibody products of thousands of people, and that's a lot for the body to handle.

I had an IVIG infusion, and did ok for the first two days, just some achiness and a headache.  But on the third day, while getting the final infusion, I stood up to go to the bathroom, and passed out. Ended up in emergency care, and took months to recover fully.  It had triggered some histamic reaction, followed by a drop in blood pressure.

So these are meds with serious potential consequences. I know you research things carefully, and I know what it's like to hope that this will be the med that helps!   I even asked my rheumy if I could try IVIG again a few months after this happened. Because I really wanted to feel better. But that was just hope talking, and my rheumy pointed out the dangers.

So don't "hang in there" if you think there is something wrong.

big hugs!
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susanep

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Re: Running out of options?
« Reply #12 on: November 18, 2013, 12:51:13 AM »
Elaine I am so sorry for all you have to keep struggling through. You are in my constant prayers. Life isn't for the weak when dealing with these things.

What is D-Mannose? I keep having kidney infections, but haven't heard of this.

susanep :)
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gurs

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Re: Running out of options?
« Reply #13 on: November 18, 2013, 03:48:19 AM »
I had a problem with Gammagard....I really need IVIG, but when I last had this a few years ago, ended up in the ER with
that nasty headache and just felt super ill. I ended up taking Medrol 4mg tabs, which helped get me through the 2 months after, but then, I couldn't get off them..still on them.....you might need some daily steroids until your body settles to all the changes.

I know we were going to try another brand of IVIG...maybe a much lower dose, much slower infusion rate etc.
Im just so scared...I tried about 3 times and always felt worse after them.

Hope your feeling better soon.

Gursie
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Carolina

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Re: Running out of options?
« Reply #14 on: November 18, 2013, 05:42:55 AM »
Thanks for posting Gurs, and everyone.

It seems that some of those of us with autoimmune conditions have autoimmune reactions to infusions of IgG.

I so wanted this to be a possible treatment for me, as I have been progressively ill with infections and the herpes simplex virus.

Although having IgG infusions/IVIG is a very 'major' treatment, I was eager to try because I have hope of truly feeling better.

It is especially ironic to me since I never test positive for autoimmune conditions (which I clearly have) and now those very autoimmune responses are what are making my infusions so difficult.

It's pretty clear to me that it is just my body shouting NO that causes all the symptoms, not an actual 'bad thing' about the infusions themselves.

Ok, I guess that's what autoimmune conditions are all about, isn't it?  Our bodies producing reactions to completely innocent entities, namely our own body!

Ok, got it.  Well, patience, perseverance and acceptance are my underlying motto.  So that's what I'll try to practice today and every day.

Resentment wants to rear its ugly head, but of course, if I 'resent' this problem I'm resenting myself.

Pretty useless behavior.   

You have all been so helpful through this, and I WILL keep you all posted.

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