Bill
Your Replies
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November 12, 2012 at 8:53 pm
Attended the 2012 Foundation symposium in Fort Worth. Once again they had an hour long presentation on the flu shot. They presented statistics going back 40 years. Basically they said if your GBS/CIDP onset was more than 6 weeks after a flu shot then get the shot. There was nothing about IVIG being a reason not to get the shot and the presentation on IVIG covered it from top to bottom and inside out and nothing said about the flu shot.
Was also interesting that they pointed out that most people who “have the flu” don’ t actually have the flu but have similar symptoms and the dr. treats them for flu as it is much cheaper than running the tests to determine if the person actually has the flu.
October 15, 2012 at 2:57 pmI get one every year. My neurologist said get it. Flu can kill you. At the GBS/CIDP foundation symposium in 2010 an hour presentation on the flu shot said basically the same thing.
September 19, 2012 at 9:50 pmNot to get into an argument, I was not wise to use “idiotic”, but cellcept is a second line if first line IVIG does not work. If I read the question correctly the treatment was 4 week intervals and when that only worked for 3 weeks instead of moving to 3 week intervals it was changed to 6 weeks. Then when that didn’t work the plan was to go to level two CellCept, which reduces the bodies immune system. It seems to me that it may not be “idiotic” (I apologize for using it) but it does seem unreal to not reduce to 3 weeks. I spent 8 years on 3 weeks and got along really fine. (Am now on 4 weeks and doing great). I was put on a immune reducing medication and the result was 4 weeks in the ICU with an infection. The docs all said I would have been ok if not on the immune reducing medication. Also note that if you become pregnant they want you off CellCept as it affects the fetus. From the CellCept site: Using CellCept can make it easier for you to bleed from an injury or get sick from being around others who are ill. You may also have an increased risk of cancer. Your blood will need to be tested on a weekly or monthly basis while using this medication. Do not miss any scheduled appointments.
Why not just simply go from 4 weeks to 3 weeks.
September 18, 2012 at 7:36 pmI agree with Emilys_mom. When you are sliding backwards after three weeks why in the world wouldn’t a knowledgeable Neuro have you do IVIG every 3 weeks! Then, when IVIG is working, to want to change to CellCept is sort of “idiotic”. You need a neuro who knows what they are doing or at least is willing to do a modicum of research. You need a change now.
Bill
August 16, 2012 at 5:55 pm80 too old? I am 83 and will go in at 8:30am tomorrow for my monthly IVIG. No problems. I have never run across anything in my research of 18 years on IVIG that mentions “too old”.
August 7, 2012 at 5:47 pmYou ask “Can you walk?” I just returned from a 40 minute 2.1 miles walk half of which was up hill and half down. I can hike in the mountains for about 8 miles then I run totally out of gas. I am 83 and have been on IVIG every 4 weeks and if I go without I am quickly nearly unable to walk at all.
I hope you and all who have CIDP wind up as lucky as I am.
August 6, 2012 at 8:13 pmNot me. I have been treated regularly for 18 years, drink about 1 ounce alcohol most every day and so far no effects to my CIDP.
June 11, 2012 at 11:55 pmHi, I am not sure what I meant. Here it is: Advanced Neurology of Colorado, 2121 East Harmony Road, Suite 180, Fort Collins 80528, Phone 970-226-6111
Dr. Jerry D. Nash, MD The other one in the practice is Dr. Miller. I have had both, started with her and later was switched to Dr. Nash. Both did a good job for me. Dr. Nash treats me as if I was an adult who knew what he was talking about. He listens to me and is willing to treat my suggestions as worthy of consideration. He does not hesitate to consult with other specialties. He has twice referred me to Allergy specialists to get a handle on some reactions I had to IVIG. He has been willing to put into effect some info I brought to him from the Foundation’s medical symposiums.
I hope this is helpful. Feel free to telephone me, write, smoke signal or whatever.June 10, 2012 at 8:54 pmHi,
I live in Estes Park and my treatment is ordered by a neurologist in Fort Collins. Both he and his partner have cared for me for 16 years and I highly recommend them. If you are interested shoot me an email and I will give you info on how to contact them.
May 1, 2012 at 7:29 pmI remember at one of the semi-annual symposiums a physical therapist described how CIDP affects the muscle “motors”. She said that this meant that not all of a muscle was working. That this meant when we exercise we are not using the whole muscle and thus throwing more work/strain on the part we are using. That we should therefore exercise but take it easy to keep from over working that part of a muscle that is actually working.
I find that I can do a lot of “exercise” that I used to do but not for as long a time. I tire much more quickly than I used to.
Hope my memory is correct and that this helps you.
April 24, 2012 at 5:48 pmThanks. If I understand it then the number of voices equals the number of members replying to that post. e.g. If I submit 3 different replies to a post I count as one voice.
January 5, 2012 at 7:32 pmWe all react differently to treatment so my experience may be different.
I started IVIG 1994. 5 day load. Then 1 every 8 weeks, lowered to 6 weeks and then to 3 weeks. If I went too long I regressed rapidly. 3-4 days from first symptoms to barely being able to walk. I did every 3 weeks for several years. I am now doing IVIG at 6 week intervals and am symptom free. For me 1 day every 6 weeks beats the $%#@ out of being unable to walk. I suppose I will be on it for the rest of my life. For me, I see this as a great bit of good luck and am “glad” to do the IVIG as the alternatives are really bad. I hope you get your IVIG going right so you are symptom free and can feel like that with the aid of IVIG you will live a long and pleasant life.
Good health to you.
November 19, 2011 at 11:27 amHi,
Right on Kelly!
I have been on IVIG for over 17 years. For several years it was every 3 weeks. If I failed to do IVIG timely I rapidly – 3 to 4 days – regressed to great difficulty walking and any kind of stair, ever 3 inches, was out of the question. With regular IVIG I was NORMAL. Able to hike and run. I am now on 7 week cycle and doing quite well.
IVIG is not addictive. For many of us it is the difference between walking and riding in a wheel chair.
Again. RIGHT ON KELLY YOU NAILED IT.
November 17, 2011 at 10:59 amThanks to the two of you.
My level is now 1.9.
I hydrated for 4 days prior to test. Still was given IVIG and it went fine.
I am on gammunex C due to its lower chance of serious reaction.
I will follow up on the suggestions on drugs as I am on two medications for hypertension.
Again, much an many thanks for your help.
October 27, 2011 at 11:55 amI do not know if I classify as one who found “a solution” and “get well”. I have been on IVIG and plasmapheresis for 17 years with ups (being able to mountain hike 12 -15 miles) and downs (at year 13 spending 8 weeks in hospital 3 of which were in ICU on a ventilator) and now doing pretty darned well.
I read the posts regularly. I do not often post as I find anything I might say has already been well said by some one.
I suspect there are a lot of folk like me out there. We read and comment when we have something to say. We have not left. We know the gleeful and teary moments when a step forward was achieved and we wish the same for all. When we have something to contribute we will do so.
We are here.
