Your Replies

  • September 20, 2018 at 2:17 pm

    Thanks for the reply. I am certain now a few more sleepless nights later it is the Benedryl I take at bedtime. Seems this has the same effect as the prednisone. I’m 61 and it has not gotten any worse, or any better either. The opioids I was taking previously, Had the time lost effect on me also. I have much less with Gapentin, and Alpha Lipoic, combo I make due with now.

    Doc wants a sleep-study. I want to Sleep. Watch me go, and saw wood all night! I am taking 12 plus a Neupro Patch. I single finger peck, single handedly. No speed awards are coming for either us it appears!

    Best of Wishes with the hearing.


    September 12, 2018 at 12:07 pm

    I take a supplement of methylfolate (S6)MTHF)- 1/ 10mg a day half morning half nitely. If taken at once it makes me jittery.

    Does it help. honestly I think it does. I fell I have slightly increased hand strength. For if I miss a dose, I can’t open doors or take off a lid, ect.

    There is a bunch of B–vitamin info. I now the form, and mg, matter im my case.

    September 12, 2018 at 10:01 am

    I take a supplement of methylfolate (S6)MTHF)- 1/ 10mg a day half morning half nitely. If taken at once it makes me jittery.

    Does it help. honestly I think it does.

    June 21, 2018 at 12:10 pm

    Me too, both benedryl and a250 mg of steriod, slow push, prior to IVIG. I found the same result. I did notice if I drink any Caffeine, even hrs before or after. I’m nasty as can be. And no sleep, that night.

    April 9, 2018 at 4:58 pm

    Thank you for sharing!

    both my glucose My A1c, have gone up slightly, The A1C is 5.2 was 5.0 My exercise routine is really gone down hill. I need to get back on my program. The winter makes it difficult, I joined the Y, but right after had car problems and then Snow hit. So I gotta get off my duff.

    I’m pretty sure I am going back to every 3 weeks. I’m hoping that will help too. I’m also going to ask about my carnitine levels.

    Well it is nice to have a place to go and compare notes!

    Thank you

    April 9, 2018 at 9:10 am

    Great news. I only get 40mg with my infusions. it is a rough 2-3 days for me with little sleep and I give cantankerous meaning!

    April 9, 2018 at 8:55 am

    I got through the loading-dose okay. on my second infusion 3 weeks later. I started noticing small bumps on my forearms, shins. This was a sign that I ignored. They got a little worse and were itching pretty bad. I was afraid to say anything about a little bumps and decided I will see if it gets bad. Well the next infusion it went into high gear.

    I had to do a 3 day course of prednisone. They next tried stretching the interval to 4 weeks with a lower dose prior to my infusion, in my IV.

    I have been on that for 6 months now and am slowly getting better every month.
    I takes time and the treatment are kinda tailored to you condition and results.

    I been to 3 neurologists before finding out about CIPD. So keep informed and don’t be afraid to ask questions.

    There is a wealth of information here as well as support. Hope all goes well with you treatments! This is a long haul, but you CAN get through it!

    April 8, 2018 at 8:27 pm

    I’m curious. How is your blood sugar? I asked My Doc, if this may be a player in my CIDP. He checked my blood work and I am High normal, just under 95 for the last 5-6 tests. He kinda inferred My A1C would be low, not border line High.

    I been receiving IVIG along with prednisone, for almost a year now. I have kinda hit a plateau. I am better than I was. But still looking for improvement.

    March 28, 2018 at 5:05 pm

    I have had good success with Gabapentin 1500mg a day, R Alpha Lipoic Acid 1 x 300mg 2 times a day. I too had similar results with Cymbalta. I also tried lyrica. I had significant weight gain, dizziness & severe blurred vision on the effective dosage Lyrica. And to a much less extent, also with Gabapentin. Although Lyrica, was best relieving my neuropathic, hand & foot Pain. It was the severe blurred vision, from Lyrica, that ultimately prompted me to stop taking it.

    Gabapentin, has some of same issues. But for less a time span. I can take less of it. Or time it, so as to my advantage. (delay the dose to get myself home, ect). Anything to get around the severe blurriness. Where the Lyrica is so long lasting. It was a troubling problem. Particularly to drive at night. Or need to read medicine bottles, seriously can CVS write any smaller?

    My life got easier when I finally found a competent Neurologist. What I needed was someone to work With me. It ends up I have an autoimmune problem, not Diabetes as was previously thought. So, My ALC which was high, to him. Is actually a normal number for me, for like 20+ yrs. Another point, Why 3 EMG’s in 2 years. On top of all that… When my weight went down 60 lbs, to my previous averaged weight. So did my, so called high blood sugar. My mistake was, I did not have any improvement with my first, 2 doctors, My GP or the 1st Neurologist. I went to a 2nd Neurologist. We had a severe language barrier. All he did was order another complete blood workup, and another EMG. Even though 2 previous ones showed demyelination. And it was getting worse. You need to try different things and mix it up a bit. I Keep records of what works and why. This forum is a perfect example. I send my Doc links all the time!

    It is easy to lose resolve. Keep at it. Don’t overlook any success, even a little. I had to go to a Pain Management doctor to get an epidural procedure on my back. We later tried Nucynta. It was only approved after a step therapy program on Oxycodone. IMO, It was expensive, it had many drawbacks. For one insurance would only approve it for 1 year. And it was a problem every time I would go too refill it. (We don’t have it). I still have 2 scripts that are outdated for they were never able to fill them in the allotted time frame. So there was 2 pain management appointments for naught.

    FYI: I had issues with IVIG. I had trouble with the loading dose, My Doc, lowered the dose, / still a problem. Changed IVIG amount and rate. I now take an IV pre-dose, 250mg prednisone slow push, a tylenol, a benadryl, A gallon of water the day of. And a gallon over the next 2-3 days. This is important. You to flush out your system.

    I could not have typed this message a year ago. HANG IN THERE !

    If you can not find a Doc. Look into the “Centers of Excellence.”

    Are you currently on Disabilty?
    I found out a few thing when shopping for Medicare, on IVIG coverage.

    August 6, 2017 at 12:19 pm

    The text box could be a bit larger. IMO.

    August 5, 2017 at 3:29 pm

    I’m 60. I tried it. I can’t take more than 1,2 step forward. Is this test specifically for neuropathy? I have near zero reflexes, on my lower reflex tests.

    August 1, 2017 at 8:42 pm

    I was very skeptical about continuing after the rash I got. I decided to stay the course, and continue. I can now, 6 months later, I am glad I did. My symptoms have slowly started to improve. Unfortunately not in the order that I would have chosen, but I am finally starting too get some positive results. I am walking much more steadily. My grip strength has easily doubled. I can finally open a jar, (if it is the right size), I rely on my cane less and less. My strength is slowly improving. I have had this a year before I was correctly diagnosed and treated. The one common thread about this disease is it has many symptoms. It is easily misdiagnosed. Keep up the forward motion.

    When I started this I thought I would get the typical loading dose and maybe another or two, and that would be it. That was not the case. I am on #10. The rash, reaction, what ever it was stopped my treatment for 2 months. I resumed with another brand and it is completely different as far as the side effects.
    I get the same after effects as with the previous one. But I am now seeing positive results.
    I do not know about you, but I had this disease quite a while before I was diagnosed, I think this has slowed my recover. I wish you the best.


    May 25, 2017 at 12:03 pm

    Extreme blurred vision, Terrible time sleeping, I was told by family members I would get up and walk around the house for hrs. I would wake up late for work and feel terrible.

    I quit after 3 weeks.

    May 22, 2017 at 5:23 pm

    I got a nasty rash that pretty much affected top of my legs & arms, chest. Called my Doctor. He prescribed me, 4 days of IV infusions of 250 mg of Methlyprednisone. That severely affected my lower GI. The whole problem took close too 2 months. Which interrupted my next 2 scheduled, IVIG infusions. We talked about what to try next. After a few more weeks.

    We changed brands of IVIG medicine, same dose and rate. Except, I now pre-treat, with Methylprednisone prior to the infusion. I have successfully had one treatment and it went smoothly. I am due for my second round shortly.
    Thankfully I have had no adverse reaction.

    Hope it all comes together for you. Have faith and keep a positive attitude.

    May 11, 2017 at 2:02 pm

    The way I am dealing with my CIDP, is I am either moving forward or not. Which means being proactive. This site is a wealth of knowledge. Hopefully you will get results with the IVIG. I had to do a lot to get my insurance to cover me. I was turned down on my first attempts. I then researched Aetna’s coverage. I found with a simple PDF being filled out. I was covered for one year. So don’t give up if you are turned down by your insurance. In my case they needed one more test result.

    I Explained to DR Tabby that transportation is a huge problem for me too. He got me set up with an Infusion service so I only have to go to the office for my usual Examination’s.

    Till you get setup with plan it seems daunting. But if you can keep moving forward you will get a plan in place and hopefully start seeing results.