IVIG not working
AnonymousSeptember 29, 2010 at 1:40 pm
My husband was diagnosed with GBS in July and underwent 5 IVIG treatments. Nothing happened, actually a couple of weeks later he started getting worse. He was upgraded as CIDP and went through another 5 IVIG treatments, still nothing. That was 3 weeks ago. Now his legs seem to be going completely out on him as he has been able to walk enough with a walker to get from a chair to a transport chair or to the toilet but today I’m not so sure. Last night he slept in his recliner and I slept on the couch to be near him in case he needed anything. This is so frustrating:confused: The doctor mentioned chemo last week but we don’t have another appt. till the end of the month. What now?????:(
AnonymousSeptember 29, 2010 at 4:19 pm
Are you sure that your husband has been correctly diagnosed? I had 5 plasmapheresis treatments and didn’t plateau….3 more treatments and was still getting worse. It wasn’t until I had 5 IVIG treatments that I plateaued and began to slowly gain strength. I don’t know why IVIG works on some and not others…….perhaps your doctor should consider plasmapheresis. Seems a bit early to diagnose CIDP…….
I know that this isn’t easy on either of you…….do your best to remain positive. Healing when it begins takes it own sweet time…..be patient, savor each small success and don’t give up. Wishing you peace and the resolve to make it through this day.
AnonymousSeptember 29, 2010 at 5:29 pm
The way things are going, we’re really not sure of anything right now. Just wish we could see the slightest improvement to give us a ray of hope. Right now he is very discouraged and I feel very helpless. Just taking one day at a time and doing a lot of praying….
AnonymousOctober 10, 2010 at 2:29 am
[QUOTE]My husband was diagnosed with GBS in July and underwent 5 IVIG treatments. Nothing happened, actually a couple of weeks later he started getting worse. He was upgraded as CIDP and went through another 5 IVIG treatments, still nothing. That was 3 weeks ago.[/QUOTE] You state that Norman has underwent two 5/day IVIG treatments since diagnosis of GBS in July. I am assuming that one of the 5/day treatments was when he was diagnosed as GBS. Is this correct? What condition was Norman in when the GBS diagnosis was made; was he paralyzed in the legs or just weak in the legs, or what exactly was his condition? Did the neurologist do an EMG/NCV (electromyography and nerve conduction velocity test)?
When CIDP is diagnosed the neurologist will [U]USUALLY[/U] give the 5/day IVIG treatment, followed with a regimen of scheduled IVIG treatments like one treatment every week…and if that is successful, then reduces the treatments to every 2 weeks…and if that works, then reduces the the treatments to every 4 weeks, etc. until the neurologist and patient can tell when the weakness begins, and that is when the scheduled infusions are set.
I am not a doctor, but in my opinion Norman IS NOT GETTING ENOUGH IVIG. It is also my opinion that his neurologist should stay with the IVIG and administer another 5/day treatment followed by regular treatments of once a week for at least 4 weeks to give IVIG a chance to work. If it does not work after the 4 weeks, then it probably will never work.
I ask these questions and express my opinions because of my own experiences, and the research I have done on this subject.
Warmest regards to you and Norman.
AnonymousOctober 10, 2010 at 2:25 pm
When Norman got his first round of IVIG treatments he was actually weak in his legs but could still walk without any assistance. Within two weeks after he was walking with a cane. Six weeks later he was using a walker and went thru another round of 5 day IVIG. Three weeks later he can’t walk at all.
She did do a nerve conductory test and a muscle conductory test before both IVIG infusions.
She did a 1000 mg solumedrol infusion Friday, so now I guess we just wait a while again and see what happens. Seems like his spirits are up some this weekend but that could be because he’s had quite a bit of company that he’s really enjoyed.
I’m getting a hospital bed put in on Monday so that should avoid a nursing home, for now anyway. I feel like I can do just as good keeping him at home as they could and so far he hasn’t had any trouble with his breathing or swallowing. This is just one crazy disease !!!!!
AnonymousOctober 10, 2010 at 9:09 pm
I hope that your husband soon turns a corner…….Since you are bringing him home, will physical therapy still be available for him? (I feel that I improved as well as I did by directly benefitting from physical/occupational therapy). Rest, patience, therapy, family, and faith are all needed for his recovery.
Since you are his chief caregiver, don’t forget to allow yourself some “me” time for yourself.
I agree, GBS is a strange animal……..may good things start to happen in your husband’s recovery. Take care and don’t lose hope!
AnonymousOctober 10, 2010 at 11:25 pm
Tom, I have been doing physical therapy with him each day by moving his legs up and down and his feet and arms and massaging his muscles. Mostly stretching exercises to keep his muscles from getting stiff. I’m not bringing him home from anywhere because so far (knock on wood) he has never been in the hosptial or nursing home, I’ve just been taking care of him here.
I’m sure hopeing that these steroids will start kicking in and we’ll see some kind of improvement. Just doing a lot of praying these days. I know the good Lord has a plan in this, I just wish I knew what it is. This is just a big bump in the road for us and I’m ready for it to smooth back out.
God Bless everyone of you that are going through all this…..I know it will get better, just wish we knew when.
AnonymousOctober 11, 2010 at 7:30 pm
Dear Norman’s Wife,
[QUOTE]When Norman got his first round of IVIG treatments he was actually weak in his legs but could still walk without any assistance. Within two weeks after he was walking with a cane. Six weeks later he was using a walker and went thru another round of 5 day IVIG. Three weeks later he can’t walk at all. She did do a nerve conductory test and a muscle conductory test before both IVIG infusions.[/QUOTE] Thank you for answering my questions. I do have one more question: Did Norman’s leg weakness begin over a period of a month or longer; two weeks or longer; a week or longer; or a few days or longer?
I also have a couple of suggestions: 1) While Norman is bedfast he should be wearing Ted’s (special type white silk stockings) that help prevent blood clots while inactive. 2) Buy a CHEAP pair of high-top tennis shoes and put them on Norman…this will help prevent foot drop.
You asked earlier in one of your post if there was any suppliment(s) that may help. There are three that I think will help Norman: Fishoil 1500mg/day (omega-3 for the myelin sheath); vitamin B-12 (Methylcobalamin lozenge type) 2000mcg/day; vitamin B Complex. B vitamins are good for the cells/nerves. You can get the fishoil (read the lable – make sure the oil is from real fish), and B Complex at discount stores like Kroger, Meijer, and Walmart. You will probably need to get the B-12 Methyl lozenge at a health food supply store.
With warmest regards for you and Norman.
AnonymousOctober 17, 2010 at 12:33 am
Jethro, You asked about the weakness in Normans’ legs, his symptoms started in July and he started using a cane on Aug 12 (2weeks after his first IVIG) then started using a walker on Sept 11 (first day of his second IVIG) started using a transport chair along with his walker on Sept 24 and lost his legs completely on Sept 28. So I’d say the weakness came gradually within 2 months time.
I massage his legs and feet every day but I do think it would be a good idea for me to get the hose for him to wear too. I’m going to the store tomorrow to get the supplements for him to take along with his asprin and mutivitamin. I appreciate the suggestions and hopeing that something will change soon. He had a bad night last night with his hands and feet feeling like they were on fire but his constipation has gone away and it seems like he might be getting some of his taste back. Just looking for the little things and hopeing bigger things are just around the corner.
AnonymousOctober 17, 2010 at 2:11 am
Thanks for the information concerning Norman’s leg weakness…and it does sound like CIDP: Chronic Inflammatory Demyelinating Polyradiculoneuropathy. Chronic refers to the gradual course of the illness; inflammatory means there is strong evidence that it is inflammation that causes the nerve damage; demyelinating means there is evidence the damage is primarily to the insulating myelin sheaths around the nerve fibers; and polyradiculoneuropathy: poly means many, radiculo means nerve root, neuro means nerve and pathy means disease; so, polyradiculoneuropathy means a disease of many peripheral nerves and their roots, which are the points of origin of the peripheral nerves from the spinal cord.
The reason I suggested Norman wear high-top tennis shoes is that they will keep his feet straight upward – preventing his feet and toes “dropping forward”, or “foot drop”.
Norman may not feel or notice any difference taking the fishoil and B vitamins, but they are good for the myelin sheath and nerves.
I remember (nearly 14 years ago) when I got GBS the taste in my mouth – sort of a salty metal taste, but it didn’t last very long. I hope the steroids kick in too, and Norman starts regaining strength. But if the steroids do not work, in my opinion it would be advisable to try IVIG again with a weekly infusion after another 5/day treatment.
With warmest regards.
October 17, 2010 at 12:27 pm
I had immediate treatment of IVIG, followed by Plasmapheresis and it did not matter. The attack went right over both treatments like a steamroller. But that is the treatment available right now. Maybe it helps, but it is NOT apparent at the time. You have to wait this out. Gear down and have patience because this can be a long term illness. If you are lucky, you will get out of this sooner than later.
AnonymousOctober 17, 2010 at 9:49 pm
[QUOTE]I had immediate treatment of IVIG, followed by Plasmapheresis and it did not matter. The attack went right over both treatments like a steamroller. But that is the treatment available right now. Maybe it helps, but it is NOT apparent at the time….If you are lucky, you will get out of this sooner than later.[/QUOTE] If a patient gets both treatments of IVIG and plasmapheresis, the plasmapheresis treatment should be first because it cleanses the blood by removing the plasma – where all the bad antibodies are located, and would also remove the good antibodies received from any IVIG treatments prior to plasmapheresis; thus limiting the benefits of IVIG. However, this choice is made by the neurologist, but I sometimes wonder if they really understand this. AND, as you stated, you’ve got to give IVIG a chance to work…and the IVIG must be admistered properly in order to work properly.
Since there is not a cure for CIDP, only treatments, you are right: If you are LUCKY, you will get out of this – BUT NOT sooner than later. It mostly depends on what type of CIDP we have. The most common form of the disease is the chronic relapsing form largely due to the beneficial effects of treatment. About 80% of patients have this form of the disease. With the ‘chronic relapsing’ there is more than one episode in which symptoms progress and worsen for a period greater than four weeks. This is the type CIDP I have.
About 10% of patients have the subacute type CIDP which plateaus and then disappears spontaneously. The ‘subacute’ is where symptoms continue to progress and worsen for at least four weeks, but not more than eight weeks before levelling off or improving.
Then some patients only have a single ’bout’ of CIDP lasting for several months or years, after which a spontaneous recovery MAY be made. Others have many bouts in between which spontaneous remission and recovery occurs. After each bout patients may be left with some residual numbness and weakness and sometimes discomfort. For many this will not seriously interfere with their lives, and they are able to continue with or resume their normal occupation. However a small number are left severely disabled and may be dependent on a wheelchair or even bed bound. There are an unfortunate few for whom the disease continues to progress without remission. The majority of these would be ‘chronic progressive’ type, where symptoms continue to progress and worsen for a period exceeding eight weeks.
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IVIG not working??
AnonymousJuly 5, 2006 at 7:08 pm
I’ve noticed a big difference in the last 8-10 weeks. My nerve pain and the fatigue are coming back. I started Lyrica 75 mg. at night a week ago but no effect yet.
Has IVIG just not worked for anyone after 12 months? I’m getting 50 grams for 3 days every 2 weeks-it was 40 grams 3 months ago. I keep a detailed journal and it is coming back… what do you suggest??? I’m having trouble driving a few miles now and the sofa is about all I can do. I WANT to do things.I was doing so much better. 😮
Rituxan and Methotrexate have been mentioned-have you had these added to your IVIG or separately??
Now to post on Medicare/IVIG Shortage….
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