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  • March 6, 2020 at 7:34 pm

    I’m on Privigen, 3 days every 4 weeks. Next week will be my 4th round of infusions. My neurologist has been stepping down my dosage of Prednisone since starting IVIG to where I’m now down to 20mg/day.

    Since starting IVIG, I’ve notice some slow improvement in some areas while others feel worse. I’m regaining sensations in my feet and ankles, but as my steroids have reduced, I’m starting to feel itching again in my hips, thighs and back. The very symptoms that sent me to seek medical help in the first place. I have not noticed the drastic and immediate changes others have described. Regardles, I’m still experiencing a lot of problems with dexterity.

    I flushed the Gabapentin months ago after I was diagnosed and put on Prednisone. It made me feel awful.

    As far as side effects from IVIG, I’ve had none other than a very slight fever. I’m supposed to be taking Tylenol and Benadryl before the infusions but I often forget because I never quite know when to expect the nurse.

    March 6, 2020 at 7:23 pm

    I’ve never had a flu shot, or any other vaccines beyond the usual stuff I got as a baby.

    After reading all these posts though, the timing does coincide with some Minocycline I took after an ophthamologist prescribed it for my RCE. I first noticed the CIDP symptoms in late 2018 when they got severe, but in hindsight there were some minor symptoms a couple years earlier than I ignored.

    February 26, 2020 at 11:40 am

    Is it the CIDP causing or the steroids being used to treat the CIDP?

    February 26, 2020 at 11:37 am

    Before I was diagnosed, I had the same problems with sleep.

    The only thing I found to work on the nerve pain in my legs and lower torso was Lidocaine, which I found out quickly needs to be used very sparingly due to the effects elsewhere after it’s absorbed.

    February 5, 2020 at 10:48 pm

    It’s good to see a somewhat positive story for a change. The stories do vary wildly from what I’ve been reading. It does seem to help greatly to get a proper diagnosis early on before the damage is too far gone.

    Currently on 30mg of Prednisone daily, plus 30g x 3 Privigen every 4 weeks. So far after 2 rounds of IVIG, I’ve only noticed minimal improvement but a little is better than none. Ready to start the third round next week. I have been experiencing a lot of fatigue lately though, to the point I sometimes take a couple naps during the day. I’d like to get over it and start working out at least a little to regain some strength.

    February 2, 2020 at 4:51 am

    I am getting my infusions at home, which is much more convenient. Is set up the pump next to my recliner and watch prolefeed while the IV is running. It only takes about 2 hours but the nurse has yet to show up at the scheduled time due to various reasons given so it does make it nearly impossible to count on being able to plan any types of activies for those days. Also the last time, they neglected to send out the Privigen on time so had to put it off a day, then another day when UPS delivered it to the wrong house.

    January 31, 2020 at 8:18 pm

    I brought up Cellcept to my neurologist and she wasn’t fond of the idea. She claims to have patients on it but for some reason prefers to push IVIG. Currently I’m on 30g x 3 of Privigen every 4 weeks, plus 30mg of Prednisone daily. Due to the shortage, I’ve only just began IVIG in December so only 2 rounds so far. As I mentioned already, I’ve only noticed minimal improvement.

    It did take months before the doctors could figure out what my problem was and get a diagnosis. I’m sure a lot of damage has been done though I’ve never reached the point where I couldn’t walk or drive when I have to. At worst, I’ve only experience a bit of wobble in my legs during the early morning before taking my steroids.

    At this point, I’m not looking forward to the huge inconvenience of 3 days of IVIG every month. I’m hoping to find a trial somewhere for stem cell therapy.

    January 31, 2020 at 8:11 pm

    I lost a lot of weight too. From December ’18 up until around June when I started the Prednisone, I went from a healthy 180 to 145. I’ve only just gotten back close (178 this morning) to where I was but have to say it’s mostly flab whereas before I was in fairly good shape. Protein shakes do help some to get calories without loading up on carbs. The best, cheapest, ones I’ve found are the Equate ones they sell at Wally World.

    January 30, 2020 at 9:12 pm

    Initially before sending me a neurologist, the doctors were saying my problem was spinal because the MRI revealed a compression fracture and stenosis (L5/S1). I was sent to physical therapy but it didn’t help much. Eventually I was sent for a nerve conduction test which indicated demyelination, then later a spinal tap that confirmed CIDP.

    I started IVIG in December. I have noticed a small improvement, but nothing that gets my hopes up.

    FWIW: During my whole ordeal, I was online searching for *anything* I could find that might help. Eventually I ran across CIDP which described the condition perfectly. I contacted my doctor and he pushed to get me into the neurologist quickly rather than waiting several months. If I had to wait those few months, I may have deteriorated to the point of not being able to walk.

    January 30, 2020 at 9:03 pm

    I had similar symptoms though not that extreme, and it didn’t come on that quickly but still quickly enough. The worst was the itching/burning sensations in my legs and rapid weight loss. After being diagnosed and starting Prednisone, I was feeling much better within a couple days. At least enough that I could sleep and take care of daily things around the house. I’ve since also been put on IVIG, but after 2 rounds of treatment, can’t say I’ve seen any significant improvement however enough to be noticeable.

    January 4, 2020 at 7:07 am

    I know one a couple hours away (Oak Ridge, TN). Apparently neurologists are in short supply so hard to get into around here so don’t be surprised if there’s a long wait. I only got in because my PCP pushed hard to get me in earlier. I’m glad he did so I could be treated before too much damage was done.

    December 20, 2019 at 5:59 pm

    I just had my first loading dose of Privigen last week. So far I’ve noticed little difference except a little sensation in my feet and legs, and a great improvement in digestion. I’ve also suffered minimal side effects, mainly a bit of fever.

    I’m still on 30mg of Prednisone daily but also noticed my sugar levels are not quite as bad as they were before the IVIG. Could be just a coincidence. I saw major improvements within a couple days of starting the steroids.

    I think I need to give the IVIG a bit of time to work. I have to see the neurologist in early January then start my next infusions a coule days after. I expect some changes by then. If not, it may be time to look at other alternatives.

    December 13, 2019 at 9:43 am

    So I finally started my Privigen infusions after months of waiting. I’ve had 3 days so far, leaving 2 more. It’s been taking a little over 2 hours per infusion.

    No real side effects except being drowsy from the Diphenhydramine. I always make sure I stay well hydrated.

    It’s difficult to tell at this point but I do seem to be getting some feeling back in my lower legs and feet.

    December 6, 2019 at 12:51 pm

    Don’t get me started on the guitar thing. I finally figured I’d have the change to pick mine up and learn to play. My fingers couldn’t even hit the frets! It’s very frustrating.

    I haven’t worked in about 7 months now (was only just diagnosed as CIDP in July, right as my FMLA ran out). I’ve been waiting to see how the IVIG goes before I give up completely and go on disability but I think it’s inevitable given that constant infusions required. My old boss did call about a month ago to see if I wanted my job back after the new guy didn’t work out but I just can’t do it in this condition.

    I did a *lot* of work around the house when I started the Prednisone. It made me so restless I just couldn’t sit still. As the dosage was reduced, so went my energy. Now I find myself napping during the day.

    December 6, 2019 at 8:48 am

    I haven’t lost any strength, just loss of sensations and dexterity.

    When I started Prednisone, it was only a couple days before I noticed a huge difference and was finally able to sleep at night. Before I had a burning sensation that was so bad I could hardly come in contact with anything and not feel pain. Gabapentin helped some, but it made me feel awful so I quit it after going on the steroids. So far the twitches and tremors have been getting better until recently. I don’t seem to be getting any worse, just no longer getting better.

    I too have mentioned things to my neurologist. She seems to be a huge fan of IVIG, and shoots down the other options I’ve been reading about likes stem cell or Cellcept.

    You are right to be impatient. This is something that needs to be addressed quickly before it causes more damage.

    This has destroyed me. I lost my job/income. Most of the things I once enjoyed, I can no longer do. About the only thing I have left is shooting pool which I do not so much because I want to, but to get out of the house but it’s turned out to be some of the best therapy for me too. Being on my feet for a few hours helps the condition, and helps keep my glucose down. Even so it’s something I can only really do maybe once a week.