Will I ever be better?

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    • #116406
      robing
      Participant

      I was diagnosed with CIDP April of 2016. I began the loading dose of IVIG also in April of 2016, I then went to once per week for a year, then every other week for 9 months or so. My doctor tried to space it out to every 5 weeks and weakness, falls came back. I am now on every three weeks, I can tell when it’s wearing off as the pain worsens. I was on gabapentin but the side effects I had were worse than dealing with the pain. I’ve tried cynbalta and other pain meds that off the top of my head I can’t remember. I guess my question is does anyone ever get back to their old self, totally? I used to walk 15 miles a day (I worked in a warehouse) I also used to lift 20-30 pounds all day long. Now I need two hands to lift a gallon of milk and my arms still shake. Guess I’m just looking for a happy ending.

    • #116412
      Mark Robichek
      Participant

      I’d like to offer you a little bit of hope. I was misdiagnosed with GBS in September, 2016, but when symptoms returned in March, 2018, I sought out a better doctor, and he confirmed that I really had/have CIDP. I was put on a regimen of Prednisone and IVIG in July, 2018 and by November, 2018, I was pretty much back to normal (whatever that is!). In January, 2019, I switched from IVIG to SCIG, mainly so that I could travel if I wanted to without worrying about getting IVs everywhere. I’ve been slowly backing off of the Prednisone, and everything is still hunky dory; my symptoms have not returned.

      If you’re not improving at all, you might want to seek out a doctor who specializes in GBS/CIDP. For me, it made all the difference. Good luck!

    • #117583
      Peanut-WI
      Participant

      I’m with you. I was diagnosed in April, 2018 and still need a walker around the house and a wheelchair when I go anywhere. I think everyone is so different and they don’t have the answers yet. I’ve had good doctors and even went to Mayo Clinic. I’m still not getting better.

      Hang in there!

    • #117619
      BryanF
      Participant

      I wish I could offer you some hope, but I’ve been dealing with this since January 2017.

      On my good days, I’m 85% of my old self, but mostly I hover around 60-70%.

      I go to work everyday. Lifting is chore and when I get home, I’m exhausted most of the time and go to bed by 7 or 8 pm.

      And, it always seems like there are setbacks. Anytime I get sick or hurt, it seems like my immune system kicks in and my CIDP symptoms flair up.

      My strength and stamina are still way below where they should be and I get winded at times.

      On my off days, I’m a zombie and my body just needs to recover.

      I just can’t imagine how this will turn out as I age.

    • #117626
      vgau863
      Participant

      Mark, how many milligrams of prednisone were you on and how long. I understand it depends on your weight? How much did you weight at the time?

    • #117629
      Mark Robichek
      Participant

      I was taking 60mg of Prednisone for a couple months, backed it off to 30mg, then 20mg, and then every month, I decreased the dosage by 5mg, ultimately settling on my current (permanent) dosage of 2.5mg per day. My weight is about 155.

      I hope this helps!

    • #117630
      David
      Participant

      I know everyone is different, but I can tell you I have had amazing success with immunosuppressant drugs, specifically Cellcept. I went through the 6 month prednisone program, topping out at 100 mg for 30 days, I weigh over 200 lbs. Tapered 10 mg every 2 weeks. I’ve been on Cellcept for one year now, and only Cellcept without Prednisone since mid-October and I feel probably as good as I could ever be. I’m 50 years old and today I was out digging a 2 foot deep trench in a friend’s yard. I was running on a treadmill this past January.

      I know my CIDP is not in remission. I know this because when COVID hit I was concerned and asked my doc if I could cut my Cellcept dosage in half. He agreed and for the first 2 weeks all was good, then I started to get very mild tingling again so I immediately went back to my regular dosage and shortly felt back to normal again. So for me, I know the exact dosage that works for my body now.

      I have not once used IVIG, I elected to go this route from the moment I was diagnosed, and I am glad I did. I am happy to have a more detailed conversation about this if anyone needs help.

    • #117636
      Maylo
      Participant

      Hi robing

      Also here to spread hope.
      I got diagnosed with GBS in 2001 to the extend, that I was completely paralysed and I got back on track 100%. I took me 5y of intensive physical rehab but it was worth it.

      At the end of 2019, I got diagnosed with CIDP, which put me back to the wheelchair again.
      Today, straight 7mt later, I am at 80% of my physical abilities.
      I am getting IVIG (PRIVIGEN) 80g every 2 weeks to ease the sympthoms and inflamation.

      I heard a lot of stories from different people in different ages diagnosed with CIDP and I really think, that even when IVIG is IVIG, the effect really depends on the brand.
      Here in Switzerland, the low cost version is called “KIOVIG” which causes A LOT of side effects and doesn’t help that much.
      From what I have experienced myself and heard from others so far, PRIVIGEN is in regard to side effects and efficiency very good. Of course your doctor wouldn’t agree to it, since it is basically all the same stuff but I was able to persuade a couple of people to try switching from KIOVIG and get PRIVIGEN and they went from “why am I doing this” to “please more of this”.

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