Ivig- it doesnt work for me.
AnonymousMarch 29, 2007 at 9:29 am
I went to the neuro for my follow up appt on Tues. I’d had Ivig the week before. We’ve been doing monthly boosters after doing the five day in a row treatments three times. This was my third booster and the plan was to have one more and then he’d do an EMG to see where we’re at. I’ve already had two EMG’s. One in Sept and the other in Nov. The second one worse than the first.
I have said all along that I have a mild case. I can still walk. I still work full time. I just have limitations and dont walk really well but unless you really look at me, you cant tell I have slight drop foot still. People probably just think I am slow.
I have more weakness in my hands but am able to still use them. On the outside, I appear quite healthy. Inside my skin, I’m not so good.
The pains I was having have almost stopped. Just a few here and there and nothing that “jars” me . I have the pain from the ovarian cyst…but, that’s another dilemma for another day.
But, I am wondering…what really is a mild case. The dr didnt tell me that, I said that. Who am I to think of this so lightly ?
Getting back to my dr appt. My neuro told me he does not believe the Ivig is working. He said comparing my exams montly, the change isnt significant. He said comparing my exams to three or four months ago, the change IS significant. And, for the worse. He told me it’s time to consider other treatments. Plasma exchange or high dose steroids. I already have an appt for the next IVig late April and asked what he thought if I just did one more.
He told me not to be hopeful but that we could try it. The EMG is scheduled for late April and I am supposed to prepare myself for deciding what treatment I want to try. BUT,
But…he said one of two things are happening. He said there is a chance the attack has stopped and what I have are residuals and likely permanent.
Or, the attack is progressing and we need to try the other treatments.
He said he didnt know and he was so somber. Said we’ll know when we do the EMG.
I have a rash like you cant believe…I get one every time I do Ivig…got it every time but once. It itches like crazy and is all over my face, neck, arms, back…and its ugly. It happens one week after infusion, every time.
I think stress this time is realllllllllly making it bad.
Some have read my early posts and I talked about denial. I’m so back in that boat again. This really cant be happening. If I have to try other treatment, I very very much dont want to. I am so selfish to not to want to do this anymore. I’ve never been selfish. But, I feel bad when I cry…like I dont have the right b/c I’m not so bad off. Or am I ?
I have seen what prednisone has done to my mother…she has breast cancer…had the mastectomy, etc…but, the steroids…she shakes, her mouth even tremors when she talks and her poor little face looks like a moon.
Plasma exhange ? I dont have the kind of time off to take from work.
I dont want to have CIDP. I know none of us do. I feel like I’m sinking very very slowly.
Yesterday the Ob dr’s office called for me to come in right away for a CA125 blood test. I’d had an ultrasound and exam last week and they decided they werent going to do surgery right away. But then the call yesterday and I was told he wants to follow up sooner than the original plan. I was told, “but dont worry, this blood test is just to rule out.”…yeah, rule out…cancer.
I’ll know about THAT today.
sorry to write a book. I’m just feeling really bad and needed to vent. Cant talk without crying today. Yesteray, my sister was crying all day. My family is scared. I’m trying to be strong.
thanks for listening.
AnonymousMarch 29, 2007 at 11:11 am
I am so sorry that you are having to go through all of this. There are many other options beyond IVIG and Steroids. Immuno suppressants and Plasma Pheresis for example. Someone else can tell you what the other immuno suppresants are as I haven’t been treated with them for this. Best of luck, you are in my prayers. Please keep us posted.
AnonymousMarch 29, 2007 at 11:37 am
Hi Stacey – sounds like you need a big, ole hug. Just imagine that all of us on this site have our arms around you! The biggest problem I have with this disease is the emotional downs that come with it. Physical symptoms vary from person to person, treatment too, but the emotional part is the worst! Just try to take things one at a time. I know, easy to say, huh? I’m sure there are others who can give you more info on treatments on this forum, I just wanted to say hang in there and we’re praying for you. Good luck and good health!
AnonymousMarch 29, 2007 at 12:28 pm
I’m so sorry you are going through all of this. Sometimes I don’t understand why we have so much on our plate, it just happens.
I’m the mother of a 2 year old with cidp. We are doing our 4th and last treatment of a once a week plan. He’s been getting ivig for over a year but they started not to work.
We have experimented with this once a week and it has really worked. He’s not 100% better (100% means his strongest ever) but we are getting there. The dr. wants to put him on a 9-10 day regiment after this.
Please call anytime. We are at the hospital now. We have to stay overnight because we do solumedrol and ivig and it is a 23 hour thing. My cell is 228-282-5050 but I don’t have my laptop with me so I can’t answer until I get home. My email is [email]firstname.lastname@example.org[/email]
AnonymousMarch 29, 2007 at 1:20 pm
Hi Stacy. I know what you mean when you say you have a “mild” case because you can walk. There’s nothing mild about this disease. I was in denial for over a year before I sought a diagnosis and treatment. Just kept telling myself that “I can manage this.” That was a lie. My relapses kept getting worse. While I never lost the ability to walk, I was very slow and unsteady. By the time I was finally treated, I couldn’t rise from a seated position, my hands were so weak that I was having trouble typing, and I could barely clean and feed myself. I’m lucky that the IVIG worked for me. But it doesn’t for everyone, and I wouldn’t settle for considering your symptoms “residual” until you’ve tried other treatments. While I’m still not 100% (and never expect to be), my life is sooooo much better now. I still get depressed — it’s not fair that we have CIDP and it’s hard to handle the fact that I’ll be dealing with this for the rest of my life. But the support I’m finding here, along with my wonderfully supportive husband and son, really helps. I’m generally not a “glass half full” person, but I’m trying.
Hang in there and good luck.
AnonymousMarch 29, 2007 at 2:03 pm
I can sure relate to where you are. I am going through a real emotional breakdown too right now. I too, am still able to walk, mostly with crutches. Drop foot starting in left foot. Sometimes I feel guilty because there are so many worse than me. I am still undiagnosed, so ALS is still looming for me. Four months of IVIG didn’t work. Now I’m on Prednisone and no response so far. If I have CIDP it’s the asymetrical variant of it called MMN, but none of my lab tests can confirm it. I have been constantly declining for about a year. Yesterday my wife and I spent most of the day in tears. I get really depressed when I think of the future, but reminded myself this morning that I have to focus on what I have each day and make what I can of that. Living day to day is the only way I get through. Good luck to you. Appreciate what you can do today.
AnonymousMarch 29, 2007 at 3:24 pm
This is another post of support. Adding another virtual hug to the others above. I’m close to the same boat you are in – mild case, never vented and 10 years have gone by and with age I am not any better and maybe a bit worse for wear. I understand how it is waiting on tests – that is where I am now as I go back to my newest neuro next Monday to review all the blood work from a couple of weeks ago and the EMG/NCV that was done then too. I had to change neuros because of insurance. Sure is hassle transferring records, etc. I think you have done exactly what this forum is for – vent to us and we will support you emotionally. Write a few more pages if it helps.
AnonymousMarch 29, 2007 at 5:35 pm
Hi Stacey…thought I would just tell you about my experience with IVIG. I’ve been diagnosed 2+ years and have used IVIG off & on. My symptoms vary significantly over time. Just recently I was paralyzed for 5 mos from the throat down. During that stint of paralysis, I had 30+ rounds of IVIG and it worked very little. I talked to the nephrologist and he said that sometimes people need a holiday (break) from IVIG for it to resume working. We decided to do one round of plasmapheresis (5 days) and then one round of IVIG (5 days). Then, we went on a treatment schedule of 1 day of plasmapheresis & then 1 day of IVIG every two weeks. I’m doing tons better now and can walk a little outdoors. For long excursions I still need a power chair, but the change is a miracle. I’d just encourage you to work with your doctor on various treatment regimes because I’ve found that both plasmapheresis and IVIG can stop working when used too much, but with a break or in combination, they can start working. And as someone else said, if IVIG doesn’t work, there are other treatments out there. Just hang in there!
AnonymousMarch 29, 2007 at 6:15 pm
One thing I would suggest is seeing a therapist or psychiatrist about the anxiety you are feeling. I did this, and it helped enormously.
I dont have any other advice, as I’m in just about the same place as you. Your post makes me wonder if its time to schedule an appt with my neuro and recheck my nerves! I haven’t seen him since November.
Maybe together we can all figure this out. Our docs seem to have such different approaches!
AnonymousMarch 29, 2007 at 9:51 pm
Stacey I don’t have CIDP I had GBS and heard there was a GROUP HUG on this message board. I love to get a hug once in a while too! Hang in there and listen to your body. Don’t over do it, but stay steady! Put yourself up in the #1 spot and look in the mirror and smile! 😀 Now give yourself a BIG HUG! You are worth it! I read all the posts and I don’t have anything to add just that you have got alot of good advice on this thread! Hope you find this kind of support to see you thru any thing you might come across! You know we worry about each other here!
AnonymousMarch 30, 2007 at 1:43 pm
When I came down with CIDP 4yrs ago I was given the 5day treatment once per month for3months and I was ok so we dropped it to 2days per month and it didn,t work so I went to1day every 2wks and it worked. Then I was told the half life of immune globulin was 3wks so I went to 1 day every 3 weeks and 1ncreased the amount to 45 grms.This is perfect.
You may want to run the half life theory past your neuro.
My neuro was trained by Dr Hahn .Dr Hahn was recommended bythe leading Dr at John Hopkins hospital in the U.S.A. I weight 200 lbs. good luck.
AnonymousMarch 30, 2007 at 6:41 pm
I never imagined when I wrote this thread that I would get such an overhwhelming reponse of support. All I could do was cry. It is amazing to have so many people that dont even know me…CARE.
Thank you everyone for your support, hugs, and prayers. I cant say thank you enough and all I can do is hug you back and pray for you and be here for you as you have been here for me.
The blood test was cancer free and my sister and I took the day off today to go get pampered. We had pedicures. It was so nice and I actually FELT alot more than I thought I could. The guy I had was a bit rough on my big toe and made the cuticle area bleed a bit…that hurt ! But, I was almost glad that it hurt. silly thinking, I know.
Thank you again and I’ll be around…I go back on the 27th for the EMG to find out what is happening. Until then, I know where to come when I need a lift. I’ll be back in about ten minutes.
I hope everyone has a wonderful weekend. Big hugs, right back.
AnonymousApril 2, 2007 at 8:25 pm
check out my post on interferon its another approach,some of the MS folks are using this with good efficacy. Ive seen reports on positive outcomes with anti-mag in juxtaposition to IV therapy.
Ive also had B-cell depletion with rituxan with limited efficacy.
AnonymousApril 8, 2007 at 8:39 pm
Congrats on the cancer-free diagnosis. And I’m sorry about the “mild” CIDP…
I worked the whole time too, except when I was in the hospital, but it was not mild. I couldn’t walk more than half a block without tripping and falling. And even when I was recovering it was exhausting.
But when I was first diagnosed, I got IV-IG only. And then when it came back I got plasmapherisis only. Eventually I found a doctor who put me on a schedule of 6 plasma transfers, 5 IV-IG, and 60 mg prednisone, and then I got better.
I’ve relapsed a couple of times and then I go back in for plasma and IV-IG. I’ve been on a low level of pred the whole time. The doctor _will_ find a treatment that works for you.
AnonymousApril 9, 2007 at 6:10 pm
I go back for the Ivig a week from tomorrow. Remember, the dr said he doesnt think it’s working for me and I felt like I wanted to go one more time b/c what if this is the time it will work .
I have done the treatments…the “boosters” have been 1 every four or five weeks. What if that is too spread out ? What if I tried it once every two weeks for a month or two ? Do you think that would better my chances ?
I had slight improvement after the first five day in a row course, but, after that, I dont think I have. When you notice it helps, how soon do you notice and how much can you actually tell ? I know some have gone from being in a wheelchair to walking again but my case isnt so severe. I have numbness in both feet now…started with the left. Today I noticed my right foot when I was driving, that it felt like my shoe was too tight and cutting off circulation. That wasnt the case, but that’s what it felt like b/c it was in the “going to sleep” stage of numbness. I cant lose my ability to drive.
So, back to the point…I want to try the IVig treatments like ev two weeks and see what happens. Would it hurt to try ? I know…it’s very expensive and hard to come by. I just dont want to give up that it’s not going to work yet. I am scared of steroids…like you cant believe. And, the plasma exchange…ok, I would try that if I had the sick time to take from work.
I dont know. But, I do think I’m going to ask the dr. What do you all think ?
I have definitely noticed that it does make a difference when I am tired and stressed. I have so much to deal with and only this forum that understands.
thanks in advance for your advice.
AnonymousApril 9, 2007 at 7:16 pm
I am taking IVIG treatments for anti-MAG. My treatments are helpful as far as a little boost of energy goes, but I really don’t see much of a difference between my strength. I don’t fall as much as I used to though so I guess that is a difference. I was told it could take up to a year before you see the effects of the treatment because your body has to play “catch up”. I too get the rash after my treatment. Try taking a benadryl BEFORE the treatment and for the next three days after. I pretty much live on 2 benadryl every eight hours for the first week, but it handles the rash and stops the itching.
For me the steroids didn’t help at all. We did six weeks of prednisone and all it did was made me grumpy and gain weight. It didn’t help the pain or the symptoms at all. In your case it may be different but that’s what happened to me.
Treatments every two weeks may help you. I know one of the ladies who gets her treatment with me gets her treatments every two weeks. She has myesthenia graves (spelling?).
Good luck! Let us know how you do. I get my treatment tomorrow.
AnonymousApril 9, 2007 at 9:29 pm
Hey Stacey – My neuro is very willing to experiment with how many infusions I try. I started with 5, another 5, then 3, and I made a mistake and got 2 – got early symptoms, and just had 3 more last week. Have decided that 3 every 30 days is about right for me at this point. I think it depends on how you respond, and if you start to relapse – and how far/fast you go “down”. Don’t be afraid to talk with your neuro – you are a team in this! Good luck and good health!
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