IVIG Treatment question
AnonymousSeptember 18, 2009 at 8:02 pm
Hi, I am new here … with what seems to be CIDP. No official diagnosis, because bloodwork is normal. EMG nearly normal but showed nerve problem in right arm [which doc thinks is demyelinating]. Clinical exam shows weakness in both hips, both pinky fingers and both thumbs [and big right toe]. I’m seeing an excellent neuro doc in NYC, who I have been seeing for “issues” like this since beginning of ’08. Never had weakness before until last month, though — which is leading him to believe it’s CIDP but he cannot give me an exact diagnosis.
However, he believes that I should start IVIG treatment. I am nervous about doing that — starting a treatment [with some risks] before I am even diagnosed. Yet, I realize I may never be officially diagnosed with this, as other folks out there seem to be in limbo land for a long time. I’m also worried about the risks with IVIG, most notably blood clots or stroke. I see risks like that and I shudder. The doc did say they are rare, but they do exist.
I’m going for a 2nd and maybe 3rd opinion about this, but don’t want to wait too long, either. My doc has ordered the IVIG treatment, even though I told him I want to think about it a little bit — because he said that it takes a while for insurance to approve it and to schedule it.
Is anyone else out there concerned about the risks of this treatment? I realize it is quite good for many. Perhaps I shouldn’t worry about it so much. My doc is also ordering for me to have the treatments at home. That’s okay, and more convenient, but somehow I feel a little bit better doing it in a hospital, just in case something happens. What is everyone else doing and does it really matter?
I appreciate any help. I’ve been getting over the initial emotional trauma of having something serious or chronic to deal with and now just want to do the right things to get better.
Thanks and so glad to have found the group.
AnonymousSeptember 19, 2009 at 1:29 am
Welcome, I am glad you have found the site to be able to ask questions and get support.
I have CIDP. I had the nerve tests as well as the doctor took spinal fluid out to see the level of protein. If it is high that is a marker for CIDP.
I also had a nerve cut out of my leg and sent it to lab to check for demylation.
I have monthly IVIG treatments that have helped with electrical shocks and improve my quality of life. It is all very scary.
Hopefully you can get the answers you are needing and then you can make the decision about treatment.
You didn’t mention if you had any pain…I take gabapentin for the pain.
Take care and good luck
Rhonda from Canada
AnonymousSeptember 19, 2009 at 8:20 am
Sorry to hear that you’ve had to join our group………….
It took 8 months to get a diagnosis, and yes I opted for a 5 day IVIG treatment done in the infusion unit at the hospital. It took a month to get the insurance to approve it, probably because of the back and forth paperwork from the drs. In that month, I went from using a cane to being in a wheelchair. However, the docs had a diagnosis that they were positive of.
I have had no side effects from the IVIG, and thanks to this site, learned all about the infusion rate, amount, etc.
I had my last 5 day last November, had a 1 day a month for Jan and Feb and didn’t need anything until a little relapse this month which a 1 day took care of. BUT, I was put on prednisone also, and don’t know if that helped or not………..I had more side effects from the prednisone and am now down to 3 mg and still decreasing, hoping to get off it all together.
Hope this helps in your decision. Good luck!!
AnonymousSeptember 19, 2009 at 9:24 pm
And, secondly, you are very lucky to have a doc willing to try IVIG [I]before real damage is done[I][/I][/I]! Many doctors are only willing to try this as a very last resort! I’ve even had one neuro dept head claim that I can’t be receiving IVIG, because I would have to be in a wheelchair to qualify! Not so!
And I sort of provoked him by stating ‘Have you ever thought that I’m NOT in a wheelchair because of the IVIG? Your doctor is way ahead of many others.
IVIG is one long standing treatment that has been used for over 30 years for many medical conditions. However only one brand has been recently approved for use on CIDP. While many insurances can and do cover it? Risks are no better or worse than the long term use of pill-type medications such as Prednisone.
I went thru what you are going thru rite now several years ago and I concluded that in many ways the pre-testing for certain IG components in your blood can ‘match’ you to one brand or another as some of us aren’t ‘compatable’ with some brands. Do keep in mind that there’s a 50-60% chance it will work-I took that chance and am soo much better for it!
I’ve also found that yes, there are risks…and sometimes side effects, but that the results have always been worth the risks! Go web up the ‘full prescribing information’ on the more common brands used: Gammunex an Gammagard and read all of the fine print. IN the end? It’s no different -risk-wise [IF prepared and infused properly] than having dental surgery [same thing? IF done properly]. Just learn as much as you can about HOW infusions should be done and give it a try. To me? IVIG is a processed blood product – and you really can’t get much more organic than that in the pharmacy world.
Talk to your doctor about reactions, and the doctor should be able to pave the way insurance wise to make things easier. And, it can take a while, depending on your insurance too. Read lots of past posts here and learn about the ‘veterans’ and about others who are new to it all as well. Just never ever be shy about asking questions-and right away.. if you get a headache, spots before your eyes, flu-like issues and other things outlined in the pres. info. Pre-medication such as tylenol and benedryl help avoid these problems a LOT! Also, prepare before infusions by drinking LOTS of water. As if it’s going out of style. I usually start by seriously hydrating about two days before my infusions.
It’s a whole strange experience at first? But you can meet some wonderful people who are in similar circumstances and it’s really comforting to know there are real humans who are similar to you! Once the novelty wear off tho? Bring a good book and prepare for some serious napping!
Don’t hesitate or be afraid to ask questions of your doctor, the infusion staffs or from folks here. I’ll be crossing my fingers until I find out how things really went! Take care!
February 19, 2010 at 4:47 pm
What did you mean by electrical shocks?
I’m just curious.
AnonymousFebruary 19, 2010 at 5:36 pm
[FONT=”Microsoft Sans Serif”]hey there– for what it’s worth, a friend of mine who had received ivig in the last 6 months came up positive for hepatitis b [B]core[/B] antibodies… although ivig is typically considered safe, it is a blood product (from over a thousand donors) and therefore has some risks (unknown viruses not yet identified, etc). while one might argue that hep b or c core antibodies are not dangerous– they do have the potential of being reactivated. this you can google to read the different ways that can and has happened. (fwi, the friend to which i refer tested negative for these antibodies prior to the administration of ivig, hadn’t been exposed to any other possible means of infection, and then tested positive; also, he is now going through the stem cell transplant program that i completed 4 months ago.)
also, know this– while ivig does wonders for some, it does nothing for others, like me. in my case i had a stem cell transplant that, thus far, has cured my cidp. i realize many don’t believe in the word cure here– an earlier debate of no consequence. but just as an example, combination chemotherapy is one of many ways to potentially reactivate core antibodies.
my 1st neurologist, jonathon katz, who is recommended by this foundation as the guy to see in the area i live, states that ivig is only efficacious in approximately 40% of cidp cases.
i didn’t spend enormous time googling but did find this abstract for your benefit: [url]http://www.jpeds.com/article/S0022-3476(05)83296-2/abstract[/url]
best of luck to you!
AnonymousMay 21, 2010 at 8:43 am
I agree with what homeagain wrote. Maybe you’ve had your treatments by now. But, the next new person hasn’t. I’m sure there are ‘new’ members constantly joining who are facing the issues you describe.
I also had to make the decision to IVIG or not without a cast in stone diagnosis. As for the side effects, well, driving your car has side effects too. But, we all keep driving. homeagain nails it on the head with his advice to learn all you can about infusions, rates, and pre-treating with benadryl, tylenol and lots of water.
I had 5 days IVIG in the hospital. The hospital pharmacy kept the infusion rate very low because I had a minor allergic reaction which was facial flushing and a ‘funny’ feeling in my throat.
The first week following that infusion my hand grip strength dramatically improved on both sides. This was documented by the p/t-o/t the doctor sent me to. Unfortunately, the improvement faded over the next several months.
For me, the decision is a simple one. Try the IVIG because it is proven to work. The bigger concern you need to have, based on my experience, is the competence, or incompetence of the nurse who comes to your house. I’ve had multiple treatments at home. Some nurse’s couldn’t stick an IV if they had to. Others have no clue about drip rates, or how to calculate the drip rate based on the needle and tubing size. Worse yet , when using a dial a flow meter, the IVIG fluid is too thick so it makes the dial a flow metering numbers useless.
I’m on Medicare. Medicare will not pay for IVIG at home. Further, you must be considered home bound. Apparently, if you are home bound you cannot be home bound and attend physical therapy regularly. This happened to me.
After the home bound issue caused my home care provider to drop me I started receiving the IV at the local Cancer Oncology treatment center. Guess what? Medicare will pay for that. Go figure.
AnonymousMay 24, 2010 at 8:25 pm
And WHY oh WHY do docs ever read the prescribing INFO??? It spells it ALL out there clearly and almost in normal [not medical] English!
THAT is why it is KEY to know what you are being infused WITH and web up the ‘full prescribing information’ of each brand. Each ‘side effect’ I encountered [not many BTW?] was listed, A lucky trip to my dermatologist for the different sorts of ‘ITCHES’ did the trick, but getting to see the doc while I was in ITCH phase was trickier? Then I got lotions, potions and cremes to put on the ITCHes and VOILA! There are also ‘headaches’ of a super scale, which can be horrid… ask only if you get one? Otherwise be super hydrated before an infusion and sleep after one! After all, you’ve gotten an invasion of immune stuff into you doing war with your bad ‘program-error’ stuffs! That war monthly takes a bit out of you, or more?
Substituting the ‘prescribed brand’ the doc ordered? Be sure you make a copy of the orders before handing the original OVER? IS a FEDERAL LAW No-NO!
Check out IG-living magazine for all sorts of good information [it’s free, and your name is only on their and one other web link….period. That part I love]
I subscribe to the magazine [Free], but hand it out to friends or family or others who STILL don’t get it!
OK as to IVIG treatments? I’ve had them for 6+ years now, with only one bad reaction and that was in a hospital to boot! THEY didn’t know things weren’t right – I HAD to TELL THEM? They got retrained. I’ve had them at home for the last 3+ years and it’s the easiest on me and simply requires a bit of planning and coordination to get IG delivered and then weather cooperating so the nurse can get here to get the line in and ‘infuse’ me.
I couldn’t do steroids, at my onset I was almost w/Osteo; I was at risk due to other issues later for plasmapherisis. Really IF prudent sterile procedures are done [even at home?] infusions can be done safely. AND you are merely putting new immune system fighters into your body w/a bit of stuff that helps it get into you. I FELT IT WAS THE SAFEST WAY? And, I STILL DO!
Further? It’s really been an ‘off-label’ practice to use this for the last 30-40 years! It’s only been in the last 4 years that Talecris, the maker of Gammunex conducted a clinical study for approval. Prior to that the attitude was ‘why go thru the testing if we can give it w/o?’ Thing is, insurances are getting more picky about such things?
Do keep in mind that w/o good insurances this stuff is not just ‘dear’ but RICH! It IS special stuff. But for some of us? It works, and well. Some others? Don’t notice a difference. BUT, if you don’t get your prescribed brand consistently, How are you going to know? I knew when Id gotten substitutes and I really suffered at the lack.
You are likely suffering from ‘overload’ now? I understand this, yet these are key things to learn about from the get-go! Not to know is a worse problem.
Keep learning and hoping for improvements, some come fast? Others dreadfully slowly! But they can and DO come if you persist! Hope and good things!
Please don’t be afraid to ask questions? Not ONE is too silly or insignificant to ask. All are important, and many here have experienced any question you mite have had more than once?
We’ve been THERE! Done THAT! too many times to count? Keep smiling? A sense of humor can help you thru sour periods. And many of us here have had the sweet and the sour! Personally? I much prefer the absurd or silly! :}
AnonymousJune 1, 2010 at 7:59 pm
Lori, you asked about ‘electrical shocks’? Well, it’s like you’ve been walking thru a carpeted house [ideally wool] and then touch something metal….ZAP!!
But the shocks of nerves dying and or trying to reconnect can and do HURT! Often BIG TIME! It’s somewhat like being attached to a live wire? Only the wires are your nerves. When they die, they just hurt soo bad, numbness and deadness, all nerve endings feel as if you’ve been burned at worst, or really sunburned [and gonna peel] at best. This sort of pain when it happens is a CONSTANT one. IF it affects the muscles? It’s like you’ve slept wrong on a leg or foot? And when you get up you can’t feel it and it doesn’t work. You take a bit and just ‘work it out’ and things are OK, but with GBS/CIDP it does NOT work out.
When nerves reconnect or try to? The zeeps and zaps [what I call them] are usually short term [rarely longer than 5 minutes] and are intermittent- for lack of a better word. I much prefer the ‘reconnect’ types, while they can be sharp- enuf to take your breath away? I keep THINKING HARD that this is GOOD! Not bad. At times it’s hard to keep thinking that? But it helps.
Of course, to make things worse? Trying to explain this all to a doctor of any kind? Well they’ve got those 30 second attention spans? Makes a person want to bring along their ‘Robin Hood’ Staff and start swinging! Honestly, you can see what you’re saying go in one ear and out the other!
More to come later, as I get my brain in gear. Hugs and hope to all!
AnonymousDecember 3, 2010 at 8:01 pm
Thanks – Yours is the first post I’ve encountered that connected the zinging, zapping feelings I have in my hands with healing. I imagine the hypersensitivity to picking anything with edges up is related to nerv re-growth as well.
I have heard that the healing occurs exactly opposite the onset of GBS – at least, within reason. Does your experience follow that pattern? I was diagnosed 9/26/2010. My toes and feet were involved first and then my hands, shoulders and parts of my arms. Now my feet are coming back altho without much zapping pain, and I have an actual reflex in my left leg again. My hands still feel like I’m wearing gloves with needles attached to electrodes run by a random electrical generator. I imagine a tiny Nicholas Tesla asking a dimunitive Igor to “throw the switch.”
In any case, thanks for that ray of hope, and my heartfelt best to all of you.
AnonymousDecember 5, 2010 at 9:42 pm
Just be prepared for the ones that will make your eyes go WIDE OPEN and make you take a sharp breathe of WHAT?
Either way, I take them as ‘healing’ charges. Not destructive ones. New nerves sending out signals asking where, what do I do now? NOW!?
My humble opinion is that any nerve that either hurts or feels is a good nerve? Those dead ones are a real disaster! And the scariest of all. But… as long as the muscles keep working? Keep them working! Your instinct is to ‘keep still’ -normal and sensible to a degree, but if they don’t work/aren’t working? Gotta work them to keep them in shape and their ‘patterns and memories’ going. P’s & M’s being how we keep moving and circulating the rest of ourselves. They remember as long as they are worked… Web up the basics and start from there…[muscle memory]
ASK for PT, and I hope to heaven that you can find and get a good one? It can and does soo much to make a difference…such as getting one out of the ‘duck walk’ dilemma…. Where you waddle more side-to-side? Than forward…
Keep at it, there IS hope! Hugs!!!!!!!!!!!
AnonymousMarch 26, 2011 at 3:12 pm
Welcome Kate, This is my first post so please excuse any errors.
Insurance can take while, but by being courteous, but persistent, you may be able to speed up approval. I have just completed my initial 5 treatments in early March. I explained to the insurance people that I was allowed to speak to, that I was literally losing function each day. I went from completing a 16 mi. hike to and from a mtn. lake in 9 hours in November, to requiring at least 3 days to even think of making this same trip. This apparently helped as these people, who are just doing their jobs, then found ways to provide more information about what they needed and from whom to move the process along. My advice is, be polite, but ask questions and politely persist until you get answers. Re, other issues.. ask about treatment and drug side-effects and which ones may be serious. I learned over a week after the 5 initial IVIG treatments (which I believe have made a big difference), that fatigue and swelling at the ankles is normal. Why I wasn’t told to expect that before treatment is still not understood, but realize that medical personnel are all very busy and are pushed to efficiently treat all their patients. So we, as patients, must understand this, and be highly involved with the process, try to anticipate potential problems or delays and ask lots of questions on the front end of treatments and newly prescribed medicines. Remember to ask you pharmacist about side-effects and interactions as well.
I actually called the hospital where the treatments were given to be sure they had the IVIG plasma available and it would be prepared (warmed or otherwise prepared) to begin administering on the 1st through 5th days.
Good luck to you Kate, My prayers are with you for great success both medically and personally. It will be quite a journey.
March 26, 2011 at 4:17 pm
regarding diagnosis, you do not mention if you have had a spinal with elevated protein. If that too came back normal, there is the option of a sural nerve biopsy, it is a puch aof skin removed near the ankle and looked at under the microscope to see if there is an onion bulb affect. Meaning that if there are layers upon layers somewhat like an onion, each layer represents a demylienation which is indicative of polyneuropathy. You mention you have had this since 08, it seems I would suspect the ncv/emg to be more specific to a dx. However, not all people have concrete info from a ncv/emg. As well, the results are dependant on proper administration of the test. Regarding the ivig, I guess if it were me and I had not had the spinal I would ask for that first, if it came back ok, I would probably ask for the biopsy. Or, in between the spinal and biopsy you could ask for a blood test from a specialty lab called atherna, to r/o CMT, charcot marie tooth. Unfortunately, the test takes about 6 weeks and if you have cidp, 6 weeks could make a huge difference. Hope I did not confuse you.
AnonymousApril 21, 2011 at 5:51 pm
I apolgize beforehand for busting in on a thread like this. I have searched everywhere and even tried to contact my BC/BS provider (as I have had insurance with them for 30 years…and could not get one iiota of simply ‘what if’ detail from them) for help. The ‘story’ is as follows: I have a dear friend from Eastern Europe who moved to America a couple of years ago. Due to difficult work circumstances he has been unable to afford insurance (he now understands the necessity of such despite his limited income). As fate would have it he had to check into the local emergency room (and was ultimately admitted to the local hospital) on Christmas Day 2010 and was eventually diagnosed with ITP (Idiomatic thrombocytopenic purpura – which is basically an unknown condition wherein one’s immune system attacks/destroys one’s platelets). Normal platelet levels (I believe) run about 120,000 to 150,000. His were 1000 upon entrance into the hospital (he was bleeding from eyes, through skin, in mouth, in urine, etc)…and subsequently he was administered a 140units (infusion/bag) of Privigen (10/gm per 100ml)…which when the dust settled cost $44,000.00. He also had a number of xrays/test and spent 4 days in the hospital at a charge of $1185/day.
I was able to help him with information about usual and customary (like BC/BS – Blue Cross/Blue Shield) insurance allowances for the hospital room. For instance, when my wife was in the hospital some time ago…they charged about $1100/day for her hospital stay per day…but BC/BS only allowed about $300/day and the bill was considered paid in full. I am hoping that someone might be willing to share with me some kind of similar feedback with regard to how thier insurance (hopefully something like BC/BS) handled the charges from the hospital for Privigen infusion. I don’t think anyone is privy to how these behind the scenes ‘allowances’ are derived. But for instance, when I had achilles tendon surgery last year…the doctor charged over $10,000.00 for the actual surgery and again BC/BS only allowed him payment of about $2600.00. Again the bill was considered “Paid in Full”. I’ve got to believe that there are similar situations or ‘allowances’ with regard to the payment for Privigen through powerhouse insurance providers like BC/BS.
I am requesting this information so that my friend can have at least some sense of usual and customary insurance related/established allowances with which to barter with the hospital. If anyone has information wherein they were administered a similar transfusion of Privigen…and were charged a similar amount (HCPCS billing code for Privigen is J1459 ($275 per unit…140 units = $38500.00)…and then their insurance provider paid fractions of this cost (say 20-35%) and the bill was considerd “Paid in Full” and would share this detail with me…it would be GREATLY appreciated.
My friend’s life was saved with this Privigen protocol and he wants to honor payment. However, he is simply a waitor in a restaurant…and even sends portions of what little money he makes home to his parents in Romania…and will never be able the pay his hospital bill of $62,000.00+. He would like (to offer/negotiate) to pay whatever is usual and customary (like possibly BC/BS would do) if at all possible. Again, any detail and/or helpful information that anyone can share will be very GREATLY appreciated.
PS – Feel free to call me at (334) 324-9687 if it might be easier than posting. A basic idea of what is acceptable payment from a large insurance provider is all that I need to move forward/negotiate with a sense of purposeful accountability.
AnonymousJuly 1, 2011 at 3:57 pm
I was also with the people that received IVIG before diagnose (results from spinal tap) came out. It turned out that I had axonal damage in my right leg and since I already started having problems with swallowing and my face (right eye and right mouth corner) I considered myself extremely lucky. Damage (especially axonal) take for ages to repair and I don’t even want to think what could have happed if they waited until sure.
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