What to do…?
AnonymousJuly 29, 2010 at 12:24 pm
Hi everyone this is my first post so here it goes….I was diagnosed with cidp in jan. Last year I would have the numbness that traveled up my arms and legs then go away then come back after a few months. Doctor said it’s not life threatning and worse case is a cane in 5-10 years and wheelchair in 10-15 if I didn’t treat it. Was put on prednizone 70mg for a year 2 months into it got a splinter in my finger from building the kids treehouse and spent 9 days in the hospital from infection they said its because I had no immune sys because of the prednizone, needless to say I came off of that drug asap…Now 3 months later I’m just wondering is it worth the iv treatment since a lot of the thing I read is u feel ok during treatment but it comes back after. I periodiclly have the numbness.tremors and now I feel my leg muscles twitching,sudden noises make me twitch pretty hard and most of all weakness and tired. So there it is what to do? Thanks everyone
July 29, 2010 at 1:39 pm
The treatment is worth it without a doubt, you will have to get it regularly, as well, you took the prednisone regularly, this will just be safer it is plasma.
My son gets it every two weeks. It is life saving.
AnonymousJuly 29, 2010 at 1:53 pm
I was diagnosed with CIDP in April, 2007. My doctor at JHH delayed treatment until October to determine whether it would resolve on its own, and when it got worse, started treatment with IVIG. Very positive results were achieved within two months of starting treatments, and after about 14 months of treatments, my doctor started to wean me off of the IVIG. My last treatment was July, 2009. I am and have been at 100% for the motor nerves for quite some time, and approximately 95-98% for sensory nerves. My doctor believes even this will gradually resolve over time. My doctor and I have also become very good friends, and get together socially about once a month. Among other things, we talk a great deal about his research, a lot of incorrect information concerning CIDP on the web and elsewhere, accurate diagnosis, etc.. I have never heard from him that once IVIG treatment is completed, CIDP returns. You do not say where or by whom you have been diagnosed or treated, but there are now 7 Centers of Excellence (as designated by the GBS/CIDP International Foundation, and more are probably coming) which can help patients with diagnosis and/or treatment. My doctor is a leading peripheral nerve physician (along with being a professor of neurology) at Johns Hopkins. JHH is also a designated Center of Excellence. As so many on this site have accurately observed, everyone is different, and what works for one may work differently for another. However, because CIDP is a rare disease, you need proper diagnosis and treatment by a real expert.
AnonymousJuly 29, 2010 at 3:51 pm
I was diagnosed by a neurologist at medical center houston neurology dept…1st one i went to thought it was MS but could never find anything on a mri so he refered me to her she was great seemed like she knew what it was right off, so she scheduled me for the whole day of test spinal tap, emg, blood test you name it. It came back elevated fluid and she said the nerve test indicated that it had already damaged the mylen and was into the nerve in some places. I’m 40 with a great wife 4 kids 15 to 5 and coach my 11 yr olds select softball team, plus i work outside for a telecom company, the summer in east Texas really seems to be draining the last couple of years, so just trying to figure things out. I am leaning toward the ivig but live 2 hours away that’s my only hold up.
AnonymousJuly 29, 2010 at 7:22 pm
It’s got less weight gain [tho you can gain some water weight w/the hydrating] than the prednisones and it’s a less invasive procedure than Plasmapheresis. I Went straight to the IVIG as my option due to other medical issues I had, didn’t lend themselves well to the prenisones or solumedrols. I tried it, it worked! Statistics on effectiveness are ‘iffy’ in that either 30-60% of those treated respond. Response can be dependent on the proper administration, adequate doses, YOUR bodie’s tolerance to these infusions and then any results or side effects. These all come into play. AND, when dealing with infusions? It is NOT PLAY!
Honestly, I feel it is the most ‘organic’ and closest to least invasive process and procedure of all the choices…IF IT IS done correctly! I consider myself very lucky, but do expect insurance & billing wrangling. Especially as to what is covered and what is not! It can be a stressor you may not need. THat plus? There are often up-front $costs regarding meeting your deductables. Once they are met? These days, more new problems can and do arise…things the insurance companies do NOT tell you with each year’s changes.
I’ve had IVIG for six years, and again? The worst problem I’ve had has been between the billing and insurance descrepancies. Those I live with and battle to the nth degree. It’s part of the territory. Stressful? But satisfying when it’s ‘fixed’ -until the next staff turnover.
As for the IVIG? The only problems I’ve had in that area were when a hospital substituted the prescribed brand for another one-with some not-so-good results. Read and get to know the ‘prescribing information’ about the IVIG you get, so you can be alert to any problems that might arise.
A good resource to check out is IG-Living, a magazine for those who use IVIG which is put out by the collective manufacturers. Sign on and read back issues on line… You won’t get junk mail from this site? And if you want you can ask questions about IVIG and actually get ANSWERS!
All I can say? IS..I searched out the options? And for me IVIG was good to try. It worked and it’s key to keeping me mobile and sort of active.
As for getting good infusions? That depends on where you live and how much IVIG you mite need. I hope this helps! Ask questions the more you learn? You won’t know, unless you ask! Nothing is absolute w/CIDP. Nothing.
AnonymousJuly 29, 2010 at 7:33 pm
I do HATE that ‘live with it’ stance some docs take? Does this neuro have any experience with MS patients? Because I’ve found them to me more understanding. Even tho w/MS the demeyelination occurs in the brain, where we get it all in the extremeties. They can do the tests, and respect pain more than some other ‘specialists’. Depends on where you live and what the menu of neurologists are?
I actually had one PN neuro department head say to me a few years ago? That I can’t have CIDP because I’m not in a wheelchair! Don’t you THINK that the IVIG might have kept me from that? That and PT? No response, just a lot of wheels squeaking in that docs’ mind! And ironically? I went to him because of another possible CIDP s/e w/vision. Turned out to be a non issue so far! Whew!
Each neuro has biases based on their training. Web up each doc and see where they seem to stand w/PATIENTS in their diagnostics. Some docs relate well? Others don’t! Shows up in their papers. Just something to think on. Don’t always go for the department heads. Sometimes #’s 2 or 3 are better? They try harder! Just my experiences to that all.
Good luck and keep us up to date!
AnonymousJuly 30, 2010 at 5:50 am
It’s worth it, I get subcutaneous Ig, rather than IVIg, and the side effects are much less but the treatment is more frequent. Until now I have never heard of anyone being “cured” from IVIg treatment – as in never needing another treatment – but it gives me hope that one day my body will reset its immune system and I will also no longer need treatments. Congratulations ajgeb, I am happy for you that you no longer need treatment! 🙂
I also agree that getting the right doctor is essential – I also go to Johns Hopkins and have never been disappointed with their treatment or service.
AnonymousJuly 30, 2010 at 11:01 am
The treatment gave my daughter her life back! It is totally worth it!
Yes you have to be on a regular treatment schedule & make time for that but in between you can live your life!
The sooner you get started on a treatment regime the better because the longer you wait the more damage is being done.
AnonymousAugust 4, 2010 at 10:17 pm
Check into home infusions. Walgreens bought a home nursing company and they do home infusions for IVIG. I use to drive 1.25hrs to and from the Infusion Center, two days every three weeks until I learned about this. It has cut down five hours of driving for me. I am in the Dallas area. I would think the Houston area would have the same thing available.
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