IVIG Treatment – To Continue or Not
AnonymousMarch 10, 2011 at 1:02 pm
I was diagnosed with CIDP the beginning of March this year. They caught it early. I walked with no aids into the neuro’s office and straight into the hospital where 4 daily infusions of IVIG was waiting. I was discharged and started a 6 week regiment of weekly IVIG infusions with Solu-Medro. I just finished my 6th infusion yesterday. I stumble now walking with a cane. Now my GP wants me to go to Physical Therapy, when I can’t hardly walk. I feel like a golden goose with a rich HMO in my back pocket. I don’t know if I am expecting too much too soon or have too much time to feel sorry for myself. As far as talking to my GP, he is a great guy but knows zero about GBS or CIDP, my neuro has about 45 seconds to answer any questions (if that) I ask and off to the next patient; she is very intelligent and knowable of GBS and CIDP. However, I haven’t seen her in almost 2 weeks and not scheduled for another 4 weeks, no contact for 6 weeks during O/P treatment. I don’t know what to do and who to talk to. I am 68 years old and have always been very active even after GBS in 2002. Should I push not to waste any more infusions and progress to the next treatment option.
AnonymousMarch 10, 2011 at 1:28 pm
A few thoughts…
You should not be getting worse while on IVIG. I would make an appointment with the neuro & ask for further testing to be done. It is possible you have been given a wrong diagnosis or the IVIG just doesn’t work for you. Either way, you need more than 15 seconds.
I know how you feel about the dr doing that though. My daughter’s neuro is the same way. I actually had to stand in front of the door once to keep him in the room & I didn’t move until I was done asking questions. (I should note it was not done in a hostile or threatening way. We were just talking & I stood in front of the door to prevent him from getting up & walking out…which he’s famous for)
Also…another thought is your weakness symptoms could possibly be from the steroids. I Googled solumedrol side effects & this came up:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); bloody, black, or tarry stools; changes in body fat; changes in menstrual period; chest pain; fainting; fever, chills, or sore throat; increased hunger, thirst, or urination; mental or mood changes (eg, depression, personality or behavioral changes); [U][B]muscle pain, weakness, or wasting[/B][/U]; seizures; severe nausea or vomiting; shortness of breath; slow, fast, or irregular heartbeat; slow wound healing; stomach pain; sudden, severe dizziness or headache; swelling of the feet or legs; tendon, bone, or joint pain; thinning or discoloration of the skin; unusual bruising or bleeding; unusual skin sensation; unusual weight gain; vision changes or other eye problems; vomit that looks like coffee grounds.
(underlining & bold done by me)
I got this info from this website:
AnonymousMarch 10, 2011 at 3:42 pm
Thanks for your comments, appreciate it. I am seeing my GP tomorrow. I have a few of the side effects from solu-medro mentioned in the link. I seem to be caught between the rock and the hard place. My GP says the nuero walks on water. I talk to the nuero and she tells me about all her credentials and experience with GBS and CIDP, plus the fact she specializing in these disorders. Additionally, she has given lectures all over on these 2 disorders. If I could move fast enough I would block the door but she is small and fast. I am just wondering if the IVIG is not working for me. I am at the mercy of these EXPERTS. I wonder if things would change if we only paid for the medical advice that worked.:)
AnonymousMarch 10, 2011 at 9:28 pm
First off, when you make your next neuro appt? Be sure to state that you have many questions to discuss that mite extend beyond the normal ‘short office visit’ – so the doc sets aside time to talk to you. Bring a friend or spouse with you to listen to both your questions and the docs’ answers. I’ve found that w/some types of docs? Having someone ELSE there makes them pay more attention, and avoid the phone calls and other distractions. It lets that doc know you mean business and have questions. Further? What YOU hear may not be what is SAID? Ergo, another person can help you get clear all you’ve HEARD.
Usually, insurances allow a trial period of IVIG for 3-6 months and evaluate any results after that time frame to ‘assess’ if therapy is worth continuing.
Truthfully? You got diagnosed and treated SOO FAST! Tell your doc he mite have set a ‘speed record’ for CIDP! CONGRATULATIONS!
Make it clear, that while she is the expert? She’s not educating YOU the patient, therefore doing both of you a disservice. At times such as these, a #2 doc is often the better choice? Less impressed with self and more eager to learn from YOU the patient! Any doctor that cannot spend time explaining a few ?’s to ease you and your treatment is a foolish one IMHO. I come into any appt w/a note pad with no less than 3 and more than 10 questions.. IF I get out w/ 3 answers? I’m doing good! I get a lot of ‘get back to you’s’ but am never gotten back yet on… That’s ok, the biggies are addressed. Chip away at these questions when and as often as you can…and expect the proverbial “I don’t know” often. Because they DON’T know! Scary but true in many aspects. That a doc is honest enough to say they ‘don’t know’? Is fairly honest.
Glad you got diagnosed, hope you keep working on the IVIG, it did wonders for me and still does! And don’t be a doormat about your treatment and questions! Feel better soon. Truly!
AnonymousMarch 11, 2011 at 12:31 am
Gary I am just wondering if you might have MMN (multi-focal motor neuropathy) as Kelly had some good points about you perhaps reacting to the Solumedrol versus the IVIG with your increased gait weakness. Those who have MMN often experience increased weakness with steroids. I can’t remember all of the details on MMN, but I think conduction blocks are a big factor in diagnosing it, and it appears sometimes that those with it can be misdiagnosed with CIDP. Good luck.
AnonymousMarch 11, 2011 at 11:15 am
I got worse my first several months of IVIG treatment, then I became stable and finally I started to get better. I still have to be aware of the difference between shorter term weakness caused by the IVIG treatments (lasts the next two days or so) and the longer term improvements which happen slowly. That said, this is just my experience and I went untreated for years. Your neuro did good catching it so soon. I think you should bring your concerns to her.
May 28, 2016 at 7:16 pm
I’ve been diagnosed with CIDP and have gotten 5 days of IVIG for the last 9 months. Get the flu and terrible sore throat each time. Wondering if it’s worth it. Still have terrible pain in feet and unsteadiness. Any comments? Bob Lowe. 7709120857
May 28, 2016 at 8:59 pm
It is fairly common for patients to experience headache (which can be mild to severe), stiff neck, and fever during or shortly after an infusion. Patients may also feel fatigued or flu type symptoms for a day or two after their infusion. This is called aseptic meningitis syndrome. These symptoms are manageable and can be minimized or prevented by infusing IVIg very slowly.
Variation in blood pressure, shortness of breath, chills, fever, rashes and any allergic reactions must be closely monitored during the infusions. Discuss your questions about side effects or possible allergic reactions with your physician and your infusion nurse.
The length of time it takes for an IVIg infusion will vary for each person. On average, it is between 4 to 6 hours. The specific dose ordered by your physician, in addition to your own tolerance to the medication, will determine your length of stay at the Infusion Center.
Usually an IVIg dose of 2 GMs/kg is divided into 2 doses which would be infused over 2 days. This same dose may be given on alternate days or even divided over 5 days if side effects become a problem. Treatment is usually repeated every 4 to 6 weeks.
June 2, 2016 at 9:55 pm
I had sudden onset of polyneuropathy after many years of very mild toe tingling. I met with a neurologist (3rd one!) who said that Guillan Barre – or some form of the condition is the number one condition misdiagnosed as idiopathic PN. He said that the markers for the disease don’t show up in blood serum or in spinal fluid after the acute period. So, if you are not tested in the first 4 to 8 weeks you likely will not have abnormal levels to get a diagnosis of CIPD or CIP or any of the alphabet soup of related neuro diseases.
My only abnormal tests are two EMG’s for the Idio PN diagnosis; I am 7 months into this and my condition is worsening. Walking is very difficult because my legs are weak and painful after only a few blocks. Symptoms are now affecting my abdomen and chest when I lie down. If I am able to get a CIDP diagnosis is it too late for IVIG to stop progression? Thank you for any help. This thread and posts from members has provided me with determination to continue trying to get a diagnosis and treatment.
June 2, 2016 at 10:46 pm
IVIg is usually given in a ‘loading dose’ for GBS where you get it daily for about 5 days. I was given it daily for 10 days and it did little to stop the progression for me. After the loading dose, maintenance doses may be given every 1-2 weeks to keep GBS in check.
IVIg stops your autoimmune system from making more bad antibodies, but does not remove the bad antibodies already released into your system, these can continue to do damage. Plasma Exchange (PE) removes the bad antibodies but does not stop your body from producing more. I think, depending on the severity of individual cases, that treatment should consist of 3 days of PE followed by 5 days of IVIg (or SCIg).
Some info about IVIg can be found here: http://www.cidpusa.org/P/ivig.htm
July 11, 2016 at 9:59 pm
Hi everyone & Anonymous
Interested to know how you are feeling now since March.
My dad just started his treatment IVIG yesterday 3 packs 2x200ml+1x50ml. Docs keeping him in hospital for 5 days of treatment to monitor. His BP is high 164/68
Interested to know what to expect and look out for. Is it helpful.
August 1, 2016 at 10:49 am
I can’t help with your question because I have so many of my own? But I hope your dad is doing well.
My question: I had severe hip and leg pain for 8 months since onset of neuropathy but now pain is almost gone! Numb feet and legs up to knees. 2 EMG’s showed axonal damage and waiting for results of nerve biopsy. What’s with pain subsiding like this? I am almost off of all pain meds.
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