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
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.
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.
finalldx,
If you have chronic UTIs, take D-Mannose.
It works a charm.
Elaine
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.
So sorry. What are they giving you the med for?
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.
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
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?
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
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?
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!
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 :)
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
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
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
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
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
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?
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
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
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
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?
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
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
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.
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
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?
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
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
I'm glad they are doing the IVIG with steroids by IV.
I certainly hope they can start sooner then Jan. BUT, you need to be over this reaction BEFORE you try the IVIG.
Have you ever taken steroids (By IV or higher dose oral)? Did you find it helped with flares (particularly itching/burning)? If so, then it might help you get through the IVIG.
My best advise for your first IVIG is fluids, fluids, fluids...and BTW, did I mention fluids...LOL I'm serious though. Extra fluids in your system really help. There are many articles about fluids being very important to help avert reactions with IVIG. Also avoid caffeine, since it's a diuretic.
My protocol is to take the benadryl & Tylenol, then infuse the IV steroids....then wait 30 minutes. During this 30 minutes, I get steady IV fluids, and I drank more fluids. Then at the end of my infusion, I get yet more IV fluids for a good 20-30 minutes. And I drank fluids throughout the infusion.
Have you ever discussed your itching/burning with your neurologist? I don't know about other treatments he could offer, but would be important to tell your neurologist about this very significant part of your medical history...since it happens frequently, with numerous meds, sometimes by itself, with flares. The most telling sign of it being neurological is the burning...that is classic (PN) neuropathy, which you have!! It might open doors for him to try other treatments.
Of course Sjogren's is associated with depression...most AI diseases are. I just caught your mentions of this when you have flares or with these reactions...both of which is when you take benadryl. It also stops when the flares/reaction stops...and you stop taking benadryl. May be a coincidence. I know the reputable drugs.com reports for health professionals that benadryl "nervous system side-effects include depression with drowsiness and sedation in NEARLY ALL patients treated". Just a thought.
So exercise would be a good thing....anything to take your mind off this for a while. Bake some cookies, make some popcorn and watch a movie, do some light exercises or go for a short walk. You need a break...what ever works best for you!!
Have a great day, Elaine.
Actually I always take Benadryl at night.
So I never don't take Benadryl (yes, that's a double negative!). I always take Benadryl is a better way to put it. To help me sleep.
I took lots of oral prednisone when it first came out, in the late 50's actually, when I was 18.
It cleared up my severe eczema, and made me anorexic and paranoid. It was interesting, to say the least.
I haven't had it since, except twice as a pulse pack for allergic reactions: Once to Sulfa, and once to an insecticide my husband had used in the attic and cellar.
The palms of my hands are throbbing with itching and tingling right now. my face burns like a sunburn.
It's probably a form of neuropathy, but when I recently had the EMG on my arms and hands, they're OK. It may be another kind of neuropathy.
My doctor does not think I have Sjogren's since I test negative for Sjogren's. The Neurologist.
I am having the worst brain fog of my life, and I'm in the worst possible mood. All of my family in in the kitchen and living room getting ready for a big dinner. and I just want to stay here in the bedroom.
More people are coming...there will be 11 at dinner I think.
I have to go out and join everyone eventually. But not right away.
I took two Benadryl and three Tylenol a few minutes ago, so I hope they kick in soon.
This is like a very very bad flare, and I feel like a witch.
Hugs, Elaine
Oh, Elaine sweetie. I hope you feel better soon. Well enough to enjoy your big gathering and feast.
You are not a witch dear one. You are a precious angel. :-*
It's the ones that take long term benadryl that have the most problem. Do you take 'more then usual' during your flares? Does the 'more then usual' coincide with your depression and flares?
Do you remember if the steroids helped with the sulfa reaction or insecticide? Was it the same type of reaction (itching/burning)? If so, I bet the steroids will help what you are experiencing now. Do you think a pulse pack of steroids would help this, based upon your past experiences?
It does sound like neuropathy (itching/burning). I know you've had EMG's, but have you have a skin biopsy for small fiber neuropathy? The itching/burning are more like small fiber neuropathy...damage to the unmyelinated fibers. It also goes with the autonomic dysfunction you have (because autonomic is small fiber nerves). Treatment for SFN is different then the large fiber PN, that you have. You should definitely bring this to the attention of your neurologist at Duke. If you research the itching (especially burning), you will see so much on SFN...it is the hallmark symptom of SFN. And SFN can be just legs, just arms, or any combination...including common full-body or sporadic places like face, ears, hands, etc.
I hope your dinner went well and that you were able to enjoy the company and put some of this out of your mind for a while. What type of hobbies do you enjoy? I think you would benefit from a few days of 'me time' to enjoy your favorite things.
Just know that we are thinking of you and hope you feel better soon.
Thanks Anita,
Your ideas are all so good.
BENADRYL: I doubt if it's the Benadryl, really. When I was flaring with the IgG I took Claritan during the day, not Benadryl, so I didn't add to the Benadryl until this last time when I felt desperate.
I think this is the depression that is part of the flare syndrome for me. I take Cymbalta regularly, 60 mg, which an antidepressant but I really take it for pain. The depression clearly just comes and goes with the itching, profound fatigue, headache and bone pain.
DEPRESSION: I just find the depression so interesting because I can't separate it out as easily as I separate out the other symptoms. My negative attitude seems to be a logical evaluation of what is going on instead of severely skewed by my flare state.
It's like I have to split my brain and talk to myself in order to deal with the depression part of my brain. I don't know if that makes sense, but It feels like sitting in the light, and telling your eyes, no it's not really dark in here, while your eyes keep saying It's SO DARK. And all the time, because of the flare your eyes are closed to the light. And you just cannot open your eyes no matter how hard you try.
I'm in several book clubs, and on the board of a large Newcomers Club. Right now both my sons (43 and 49) are visiting and staying with us, and the three local grandchildren will be here for the weekend.
It was a family dinner last night. Usually I have an event like that organized down to the last fork. But I just couldn't do it, and was made crazy by the chaos of the event.
This morning I'm cleaning the kitchen, running the dishwasher, and I do feel better. The itching and burning is much less, all the flare symptoms are subsiding now. It's a week from the IgG infusion on last week.
I think underlying my current feelings is the rather clear knowledge that I probably won't tolerate the IVIG either. I have to stop focussing on that, since I don't really know that yet.
AND, when all is said and done, if I cannot take IgG it won't be any 'worse off' than I was this time last year when I didn't even know what my Immune Deficiency meant. And I will probably just have several infections during the winter, and deal with them as they come.
And soon my Neurologist will give up on his quest for the cause of my Peripheral Neuropathy. Yesterday I got the results of part of the blood tests I had at noon. I don't have Hepatitis C. Well, I didn't think I did. And I'm doing a 24 urine collection to see if I have a copper problem which I"m quite sure I don't have, either. There are two genetic conditions that involve copper: Wilson's Disease, and Menkes Disease.
THe intense focus on my health has produced one clear piece of information for me. Underlying all of my health issues is my Immune Deficiency. My immune system is not protecting my body. Everything else has risen from that, including the chronic infections that led to the routine ingestion of the antibiotic that most like caused my Peripheral Neuropathy. And 25% of those with my Immune Deficiency have autoimmune conditions. Mine are never found on tests, but I know I have them.
So I now have what is called a Unifying Diagnosis. Something that explains all of the conditions and symptoms that plague my health. It is Immune Deficiency.
It is very possible that my deficient immune system will not tolerate the one treatment that would help it: addition of IgG to my blood.
If that is the case, then I will have to accept it, as I accept my intolerance of opioids. As I accept my Peripheral Neuropathy and attendant disability. As I accept my osteoarthritis and that my knee and neck and hands will never work properly and will always hurt. As I accept my fatigue, periodic flares.
Today the depression is much less, and therefore I can contemplate accepting those things and still having a worthwhile and interesting life.
Hugs, Elaine
You know, I was reading your last post and for some reason looked back at the subject....Running out of options? I'm sure you feel you are in fact running out of options. But as I see it you are just now opening the door to the bigger picture...which has MORE then just options.
Please don't let your neurologist give up his quest. He doesn't know he's missing anything, because he doesn't know about some of your symptoms. Go out of your way by giving him the tools he needs to find the answers...tell him about the profound itching/burning. Ask him about small fiber neuropathy.
This is treatable in many cases and can open all those doors you feel are closing. It can explain why your body responds to IgG the way it does and you might be able to find a way to stop this itching/burning AND control your infections with IgG.
There is more then one type of PN. Once they found your profound PN by EMG, they never looked further. BUT there is small fiber neuropathy (SFN) that is just as profound if not worse then your large fiber neuropathy. You have talked about your autonomic dysfunction as well...this is a part of SFN!! You have the all the classic symptoms. Search this forum for SFN...go to the PN forum and ask there.
I hate to see you right at the doorway of possible answers/treatment, and not open it. I know this entire road has been draining, frustrating, and full of uncomfortable symptoms. I hope you find the strength to pursue this. When do you see the neuro again?
You should focus on your book clubs, and enjoy all the pleasures in your life...every chance you get. Distraction is a great tool to escape the pain and symptoms of our conditions.
Take care, Elaine. I hope you have a great day today!! Please keep us posted.
THANKS, Anita.
I will send this neurologist a list of my additional neurological symptoms. I can send him an "in the system' email which he will read. I will write it carefully before I cut and paste it into an email in the Duke system.
You're right, he probably doesn't have all the information he needs, although I don't even know for sure that he isn't going to proceed beyond this level of tests. I've just made that assumption.
Really it is the depression that goes with my flares that makes me negative! My heart goes out to those who suffer from depression on a regular basis. It is such an insidious condition, clouding everything in such a convincing way.
My family refuses to talk with me at the level you've been willing to help me, Anita. They hear "problems" they feel "depression' and they tune out immediately. I don't blame them exactly.
This is the place I've found the greatest support in my entire life. Amazing.
Hugs, I'm off to write my neurological symptoms in a creative concise way.
Elaine