What are the biggest and fastest gains you’ve received from IVIG or other treatments?
AnonymousApril 20, 2007 at 8:59 pm
When I had GBS back in 91 I only lost control of my lips and had tingling and fatigue all over my body. After some gammaglobulin I was better but weak after 24 hours.
I’m guessing I have a moderate case of relapsing remitting CIDP that went untreated in mild form for 5 years with a few more intense relapses in the past 2 years although not severe -just extra weakness and neuralgia but still able to walk etc. I also am beginning to think I’ve had CIDP since childhood but very mild and my GBS episode was just a severe event and that it went dormant for another 8 years after that.
Today was the 7th IVIG session I’ve had since March 2005. I have some moderate atrophy of my hand muscles and severe atrophy in my calves and peroneal muscles from CIDP which has been going since spring of 2000. The past month has been the second time Ive received IVIG as prescribed on consecutive days in the proper amount but the first time that the brand has not made me sick. My Doc has me on 130gms every 2 weeks over 3 days for the first month then every month. Before I was getting twice as much once a month but the brand and infusion rate always made me sick.
Anyway, I have had bad foot drop so I wear AFOs and Im trying to get some new AFOs and a cane. I dont work, dont go anywhere I have to wait in lines without being able to hold onto a shopping cart and have been kinda sedentary. I was getting weaker until my first session earlier this month and that seemed to stop it. Then I had some more severe nerve pain and tingling but I think that was the nerves coming back to life. Now I suddenly feel the muscles in my feet again and my footing is alot more sure and I can move my toes. Yesterday I was actually moving 80+ lb boxes into the garage 😮
Im still kinda tired and get flushed(elevated BP) when I do a whole lot since Im in bad shape and have been getting up at 7am so I don’t want to overdo it but I am reservedly excited about being able to move my toes on my left foot again!!!!
I’m just wondering how much have any of you guys improved immediately and how long has it lasted?
AnonymousApril 21, 2007 at 9:39 pm
The very first time I had Ivig- it was to be five days in a row. After the very first day, I had tingling in my toes that I hadnt had for a very long time. I also had very slight wiggle to my toes, too. Nothing changed over the next four days except that I got the aseptic menegitis by the end of day four and was unable to do the fifth treatment.
The second regimen, one month later, was again five days in a row. I tolerated all days and had the slight tingle in my toes the first night.
After that, nothing.
I have continued once per month or about ev five weeks of having a “booster” and I notice no improvement at all. All that I get is tired that night, and increased aches for a few days. Each time but once, I have gotten a rash but not until one week later. I got my last treatment this passed Tues and today I noticed the spots starting on my back. By tonite, it’s on my face.
Maybe I’m not the one to reply…I am interested in answers to your question here as well. My dr doesnt think IVIG is working for me and we’re doing another emg next week. I’d like to think it’s working. I’d like to think that is why I had those tingles….but, out of 7 or 8 treatments….it only happened twice.
I wish it was a miracle for us in that by the time they pull the needle out of our arm we could walk right and feel things other than pain.
sorry if I’m not much help.
AnonymousApril 22, 2007 at 11:40 am
From observing Norbert, I can say for certain that about one week after every IVIG treatment his balance and gait improve noticably. Many times, he is able to get around the house using only a cane whereas before the monthly treatment, he would need the rollator.
Also, there seems to be some improvement in his fine motor control. For example, he is steader holding a spoon and fork. He is more able to type accurately. He can more easily open bottles.
I wish I could say that the IVIG results in some fantastic total remission, but after two years, we are both more content with baby step improvements.
Hope this info helps!
Carol (Norb’s wife)
AnonymousApril 22, 2007 at 4:25 pm
Hi there – I get GREAT results from IVIG (so far). My first session, I was so debilitated that I couldn’t lift or hold anything, could not walk, and I was so depressed I thought I was dying. Five infusions of IVIG (in the hospital) and I felt stronger the first night! It took about a week after those infusions to be absolutely normal (other than a broken ankle – from falling, of course!). This lasted about 60 days, and then I went down FAST and furious.
Again, I couldn’t lift or hold anything or walk. I had another five infusions, and by day five I could walk, although haltingly, by myself. Another week and I was again “normal”.
This time it lasted 38 days and I had three infusions. I could drive myself so I felt I was gaining somewhat.
Then I got cocky- talked my neuro into experimenting with just two infusions after 34 days and I was still doing great, but noticed symptoms started on day 19. Luckily, I had an appointment with my neuro and I went in for another session of three infusions. I was down far enough that I couldn’t drive to those, and could barely walk. Four days after infusions, I was not quite as “normal” (noticed it was harder walking), but still ok.
Being tired has become a warning signal to me – SLOW DOWN! I overdid it the other day, and the next day I was afraid I was becoming symptomatic again, but rested all day yesterday (and most of today) and I feel much better. I’m not due for next round until the first week of May, so I am hoping I can stay stable until then.
The first infusions were slow (don’t know the rate, but it took 6-8 hours) and since then we have been “pushing” the rate to 2-4 hours. Wonder if that is why my symptoms have been coming on sooner? Anyway, my tinglings, weakness, foot drop, etc. seem to almost disappear after IVIG – but always come back! Know this is long, but I hope it helps you a bit. Hang in there! Good luck and good health!
AnonymousApril 23, 2007 at 11:51 am
I had relapsing/remitting CIDP for a year and a half before I was treated. By the time I got my first IVIG — 3 infusions over 3 days in August — I could barely walk, couldn’t get myself out of a car or a chair (forget a low toilet!), was having trouble with everyday stuff like brushing teeth, feeding myself, etc. My muscles had little or no resistance when the doc applied pressure. After 3 infusions, I was more steady and faster walking, got out of the car myself when coming home from hospital, was even able to open a water bottle. The improvement continued to where I felt almost normal a week later. I then received 2 more treatments (1 infusion, 4 week interval), and continued to gain strength. My neuro lengthened the interval to 6 weeks at that point, but it was a bit too long — started feeling week before the infusion, but then recovered. My last 3 infusions were at 5 week intervals with little/no return of weakness inbetween. I’m trying 6 weeks again, with my next treatment in May, so don’t know if symptoms will return before that time.
I still experience significant fatigue, have some numbness in my feet and “burning” soles of feet, muscle twitches, and intermittent shooting pains (mostly in feet) — the IVIG does not seem to help the sensory symptoms, but it has helped greatlty with weakness and, in fact, I have continued to get stronger over the time of the treatments. I have not had any other treatment besides the IVIG (at least not for CIDP, but that’s a different story!).
I hope the gains you’ve had last and that you continue to see improvement!!
AnonymousApril 24, 2007 at 9:40 pm
Wow. Today I got on the stationary bike and did 11 miles over 35 minutes. I thought I might fall down or something when I got off but I was fine. I might be sore tomorrow but I actually have a spring in my step. Im dropping 75 pounds and starting back to school in the fall. Whether this lasts or not Im not going to allow myself to be sidetracked ever again.
AnonymousApril 27, 2007 at 2:34 am
Biggest improvement?? The pain became tolerable. My good friend had actually told me she’d understand if I decided to not to go on living. She’d seen the horrible pain that never stopped I had to endure all the time.I happened to find this entry in my diary-had forgotten it.
I can walk without my walker and crutches but must be careful of any distances.I even have a flower garden this year.
I still have bouts of pain that have no words to describe it.I know that with a diagnosis help can be gotten.The fatigue makes me a couch potato for days if not careful.
I was so very glad to be diagnosed and find out there were treatments for CIDP.All the years of awful doctors telling me it was in my head or just a case of Fibromyalgia.From talking to others I found this happened a lot-especially to women.
I am thankful for how far I’ve come.
I still do way too much.
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