Need A Little In Put
AnonymousOctober 6, 2009 at 1:31 am
I was diagnosed with CIDP in June. I have been in the hospital once for plasmapharisis exchange, I had little to no improvement. I have recently changed nuerologists. My new doctor’s plan of action is IVIG. I have noticed that several of you have also had IVIG. I have been reading everything I can get my hands on about this disease and the plans of attack that ae curently available. If I choose IVIG I take the chance of contracting other serious diseases. Has IVIG worked for any of you that have been treated with it? Does anyone know the success rate on IVIG for CIDP? It seems so odd to me that so few people have ever heard of CIDP, even people in the medical profession. Thanks for your help.
AnonymousOctober 6, 2009 at 3:47 am
I have been on IVIG for 17 months. I would have to regard it as successful. I was initially given what is considered a load dose and I had improvement. I had reached the stage prior to treatment of not being able to rise from a chair, could not raise my arms above my shoulders, fell down if I lost my balance and then could not get up. After the first dose I improved some. The next two months we went to a maintenance dose and I had no improvement. I was then put back on the load dose every four weeks. I seemed to lose strength in the fourth week. So, we went to a load dose every three weeks. I made very slow but steady improvement with both strength and energy. We tried to go to four weeks back in June, but I seemed to lose stength. We do not know if it could be because of the hot weather so we went back to every three weeks for the summer. This month, October, we are trying to wait four weeks.
I am not back to 100%, and I may never be. But, I am very functional. No one can really tell anything is wrong. I still have numbness of the face (like I have had novocaine), numbness at the tips of my fingers, a very, very small amount of numbness in legs and feet. I feel like I have maybe five or ten pound weights strapped to my legs so I do fatigue with too much walking. Other than that, I can pretty much do everything. The doctor thinks my improvement is amazing and has stated no one would believe how much I have improved.
I have been told that 18 months is usually as good as it gets and I am there. I am hoping someone will tell me they got even better after 18 months of treatment. But, like I said I am very functional and very thankful for how much I have improved. My doctor has told me he cannot tell me if I will have anymore improvement. I think our goal now is to increase the time between the infusions and eventually discontinue.
I hope this offers encouragement. I know all I wanted to hear were success stories when I first started treatment. I really thought when I first started I would be back to 100% normal after three treatments (three treatments is what the insurance company originally approved). I understand now that was to see if it would work for me. And as I stated above with the correct dosage it has worked.
Again, I hope this helps.
October 6, 2009 at 10:06 am
I have been on IVIG for 13 years. Works fine for me. I am not totally symptom free but I have very little in the way of symptoms. I have had one reaction to IVIG but we went to a sucrose free (gammunex) immune globulin, do a pre-medication and slow the rate way down to 50 per hour. No more reaction and no more headache, tiredness etc. with the IVIG.
I am not aware of any real dangers of catching anything else from the IVIG. There may well be but I am not aware of them. I do not that the process of preparing immune globulin is long and expensive and mainly directed toward making it safe.
Hope this helps.
AnonymousOctober 6, 2009 at 11:23 am
Donnam and Bill THANK YOU so much for your replies. While “Success Stories” are indeed the best stories to hear I just want to hear truth and honesty…..thank you for that.
Donnam, you have come so far in your healing process, what a great sucess story! Truly a wonderful story.
Bill, they have Gammagaurd ordered for me, I have read that headachs and flu like symptems are possible, I’m planning to drink a lot of water, I’ve heard that helps.
October 6, 2009 at 1:39 pm
Regarding your IVIG questions, Bill is correct about Gamunex being sucrose free. It is the only IVIG product processed using glycene instead of a sugar base. The FDA approved Gamunex for the treatment of CIDP in September of 08. I was diagnosed in 1996 and have tried unsuccessfully over the years other IVIG products, but when we switched to Gamunex, brand specific, I experienced improvement very quickly. So based on my experience, brand did make a difference. Pre-meds (benadryl and prednisone)and a slower infusion rate seem to minimize side effects.
As you will read on this site, we all seem to have varying results from same or similar treatments, so what works for one may not be effective for someone else. Communicate with your doctor and discuss the various treatment protocals out there and keep searching until you get the one that works for you.
AnonymousOctober 6, 2009 at 2:20 pm
My 8 year old daughter has been getting IVIG for nearly 4 years. She was dx’d with GBS in Dec 2005 & CIDP in March 2006. I have read EVERY thing I could get my hands on about IVIG.
IVIG has been around since the 1950’s, it was first used to treat immune deficiencies. It’s been used to treat autoimmune diseases since the mid 1980’s, if I remember correctly.
In all of that time there has been ONE bad batch of IVIG released & that was in 1989. There was a small group of people who contracted Hep B from it. IVIG manufacturers took the IVIG off of the market & came up with a new cleaning process. Since that time there has been NO reported incidence of contracting ANY disease from IVIG.
IVIG works for most people. It is extremely important to make sure you are getting the right amount at the right frequency for you. It’s often said here that treating CIDP is an art form & it really is. Each person is different.
Your treatment should start off with a loading dose which is 2 grams per kilogram. I think you multiply your weight by 2.2 & that’s what your total load should be. Then you divide that by 5 days & that is what you should get every day for 5 days.
Keep in mind that math may not be correct because I often get it confused.
Now some people will need multiple loading doses while others need just one & then can go on a maintenance dose.
Some people can go on a monthly maintenance dose while others will need weekly infusions.
You see…each CIDP’er is different. It’s important to find a dr who recognizes that & will treat you accordingly.
IVIG has been a life saver for my daughter. She gets to live a normal life.
AnonymousOctober 6, 2009 at 3:31 pm
I have been on IVIG to treat my CIDP for about 14 months. It is really a lifesaver for me. Without it I would no doubt be unable to walk. At my worst state, a little more then a year ago, I was not able to get around without some help and could not even grip a fork. Without IVIG I am sure I would have been wheelchair bound by now. My legs and arms were numb and I had a real difficult time walking.
My first treatment was a slow 5 day infusion for 6 hours a day. On the fourth day my numbness had decreased significantly and I was able to get up the stairs again. By about a week after my treatment I felt almost 100% again.
I am now on a plan where I get a 2 day treatment every 8 weeks. It works for me and keeps the symptoms at bay. The only side effects I had during the treatments were the headaches. Just make sure to take some Tylenol (ask your nurse about that before you take it) before your treatment and drink lots and lots of water. That will help.
While I know that not everyone gets the results I have, I cannot stress enough the importance of IVIG for me. This last August I was able to fulfill one of my lifetime goals and climb Mt. Rainier. Last year at this time I thought that I was going to have to scratch that goal off the list.
Wishing you luck, and a speedy recovery.
AnonymousOctober 6, 2009 at 4:05 pm
I have been receiving IVIG for about two years now. I began treatment three months after my first symptoms appeared and with the diagnosis of “maybe CIDP,” but the first treatment had a disappointing result with no effect whatsoever. My neurologist then referred me for a nerve biopsy and consultation with a specialist in neuromuscular disorders who indeed thought it was CIDP and had me continue with monthly IVIG at the loading dose of 2g/kg. My condition still continued to deteriorate, however, for three more very long months before it finally stabilized. Since then, I have been getting IVIG at the maintenance dose of 1g/kg, Gammagard, the same brand you say has been ordered for you.
As I understand it, the IVIG has kept the inflammation in check, which has allowed my nerves to heal, although very, very slowly, and I have made considerable gains in sensation and muscle strength and functioning. Eighteen months of weekly physical therapy has helped greatly, but I still have much room for improvement. Neither of my neurologists will say whether my progress will continue or not, because this illness is just not predictable. Following my treatments, I sometimes have minor headaches or flu-like symptoms, not as often as I did in earlier months, but they are very minor, hardly worth mentioning. I pre-medicate with hydrocortisone, tylenol, and benadryl. IVIG is probably the “cleanest” treatment for CIDP, with the fewest side effects and the lowest potential for complications. Still, I had one very weird episode of visual hallucinations one evening after my treatment – 45 minutes of brightly colored, pulsating, geometric shapes in one eye – that were diagnosed as an ocular migraine, due to a blood vessel spasm in the brain, a benign event most likely caused by the IVIG. So, though you never know entirely what to expect with this illness, IVIG has helped many people as it has helped control my CIDP, and I hope it works for you, too.
AnonymousOctober 6, 2009 at 4:19 pm
I have been told that 18 months is usually as good as it gets and I am there. I am hoping someone will tell me they got even better after 18 months of treatment. Again, I hope this helps.[/QUOTE]
I am still getting better after [SIZE=”7″][B][U]32 months[/U][/B][/SIZE]. Each and every month I can tell I am getting better despite setbacks from H1N1 and other illnesses I am still getting better from IVIg. The weekly doses work much better for me than the monthly loading dose and I am getting better FASTER now.
[CENTER][SIZE=”7″]DO NOT ACCEPT ANYONE ELSE’S LIMITATIONS FOR YOUR IMPROVEMENT![/SIZE][/CENTER]
AnonymousOctober 6, 2009 at 7:13 pm
And, I’ve had IVIG for FIVE years Plus! It not only seems to help my body? But somehow in the helping of the body it also helps clear the mind…of Pain, of fear? Of WHAT? Dunno… It’s pretty ‘organic’ if, you consider ‘pasteurized processed’ blood product to be organic…But, [yeah another but?] It HAS lots less additives/side effects than lots of other drugs/meds/treatments.
IF I had to NOT have IVIG for the future? That not having it would have been a ‘death sentence’ for me per-se? Had one neuro say I couldn’t have CIDP ’cause I wasn’t in a wheelchair, and I’d replied, were not for the IVIG, ever think I would now be in one? DUH? But the s/e’s of alternative treatments wouldn’t be well, ‘good’ for me in the long run. And, now that other immune issues are popping up? It was the BEST choice!
There are a LOT of IVIG info resources out there, but the best one seems to have evaporated into internet ether! I am working to try and get it back? And am willing to share any key sources I have found about it all with you. PM me for key references….
Do keep in mind, that many docs have different attitudes/altitudes about IVIG. Some are extremely cautious in dose therapies and others are generous. To a degree, I put that to past training and training biases, and often, whether you and that doc are in sync in any way. Further? IVIG has a 40-60% success rate…and I’m sure that variable is predicated by the amount dosed for any patient and/or the brand prescribed. Some of us just cannot accept substitues! I had that experience ONCE and reported my ‘essential aseptic menigitis’ reaction to the state medical board…they investigated, folks went thru retraining and I no longer go to that place. I get it more safely at home. I got a doc who’d gone on the generous side, and I feel It’s saved me from much other possibly worse [?] immune damages. New immune issues are popping up like ‘puter viruses? and The IVIG maybe the only thing keeping things from well, ‘exploding’?
I have to say that I made amazing progress, and was leading a sort of normal life w/a cane, but I got a flare up [hatching slowly since the new year] and now I’ve fallen and am starting over in the ‘mobility quarter’. Just NOT HAVING IT GET WORSE is a blessing, and don’t you ignore that aspect? Progress can and is slow. Nerves die rather fast, but it can take months/years for those nerves that died in minutes to re-grow. AND when they do? They can hurt a bit or a lot as well, in that regeneration process. That part docs nor researchers understand…yet?
I agree with Julie?
[B][SIZE=”5″]ONLY YOU CAN DETERMINE HOW BEST TO DEAL WITH THIS?
FIGHT W/ALL YOUR MIGHT IS MY MOTTO AS WELL![B][SIZE=”2″][/SIZE][/B][/SIZE][/B]
However? You have your choices…and with it all comes pain and mourning [for your past life]. Keep faith in yourself, in your core being, and listen to yourself about your ultimate survival. Don’t think docs are on track? ASK! Challenge, don’t be stupid but informed, this is a great resourse but others can help as well. Back up your questions w/facts. Just cite the ‘sources’ such as NIH or Pub Med etc. but don’t give doc it all -He/she is either gonna look up ‘clues’ for self? or not. YOU will know- via the feedback, if any. No more said.
Just hang in there – THIS can be scary stuffs? But the more you know, the better you can prepare yourself for GOOD and PROPER treatments! Hope always and keep us up to date, please!
AnonymousOctober 6, 2009 at 9:26 pm
Oh my gosh, THANK YOU so much to all of you for your responses!!!!!! Thank you for your knowledge, your experiences and your time to tell me your stories, I have learned so much from your courage. Looks like I will be starting on Monday (10-12) for five days, six hours each day. Then once a month for five months. From what I understand they watch you to see how you tolerate the IVIG and make adjustments from there. I have nothing but positive thoughts!!!!!!
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