Kathy

Your Replies

  • February 24, 2023 at 11:54 am

    Thank you Jim for the clarification on Plasmapheresis vs. Plasma exchange.  I knew there was a difference, just didn’t know the details.

    Kathy

    February 20, 2023 at 8:35 pm

    Thank you for answering my questions.  I’ve always been curious about PE. Thankfully I respond well to IVIg.

     

    February 12, 2023 at 9:59 pm

    Hey Bryan – Thanks for sharing your experience with those vaccines. I too have been slightly pressured to get Covid, shingles, flu, & pneumonia vaccines. Hard pass for me.

    I have a couple of questions.  Have you just been on cellcept and no IVIG, prednisone etc.?  If only on cellcept did you wean off of IVIg? Also, if only on cellcept I’m wondering if possibly your bad antibodies are building up, then the vaccines pushed your body into full on attack mode.

    Is the plasmapheresis helping you regain any strength?

    I currently take cellcept daily, IVIg and solumedrol every 6 weeks.  Fully functional. Goal is to only be on cellcept, so we are reducing the dosage of IVIg slowly.  I have minimal symptoms a couple days before infusion.  Also looking in to Hizentra subcutaneous?

    Hope you are feeling better each day.

    Kathy

    October 1, 2021 at 7:35 pm

    Bryan, you might consider asking your doctor about getting IV Solumedrol prior to your IVIG infusion.  I currently take 1500mg cellcept twice a day, IV solumedrol before my IVIG every 5 weeks.  No side effects from the cellcept.  The solumedrol keeps me awake for hours and hours (even with a sleep aid), but no other side effects like I had with the oral prednisone.  Hoping to push the infusions to 6 weeks by the end of the year.  Have to get labs every 3 months, mine come back with no problem areas.  Also – I have chose not to get the COVID vaccine.  I won’t get a flu or shingles vaccine either.

    Best of luck

    Kathy

    August 8, 2019 at 7:50 pm

    Hi Jessica,
    Thank you so much for donating plasma. Whenever I am asked “What can I do for you?” I say, if possible, please donate plasma. So far, I have been lucky with no disruption to my 4 week infusion appointment.

    I hope all goes well. Thanks again.

    July 5, 2019 at 11:59 am

    Hi Debbie,
    I am in Northwest Montana. Went for infusion yesterday, Privigen was available. I am so grateful. I hope your area has IVIG available now.
    Kathy

    June 26, 2019 at 11:28 pm

    Hi Debbie – The day before my infusion last month, my neurologist called to let me know that the infusion center at our hospital did not have my usual IVIG – Privigen. They had Gammagard and he ok’d me to get that brand. I was a bit unsettled about that, just due to some comments from others that did not do well with Gammagard. When I arrived at the infusion center they had my usual Privigen – Go figure. I’m not sure what to think about the “nationwide shortage”. I am scheduled for my next infusion on July 4th. I hope they have Privigen!
    I hope you are able to receive your IVIG and are feeling okay.
    Kathy

    May 6, 2019 at 9:19 pm

    Thank you for the info, GH. Nice to know that some of us can tolerate minimal side effects.
    Kathy

    May 6, 2019 at 9:16 pm

    Hi Bryan,
    Good Luck with the Imuran. I hope you have great success with no side effects. I’m pretty certain I will be trying Cellcept. Will know more in June after my next neuro appointment.
    Kathy

    April 14, 2019 at 10:11 pm

    Hi All,
    The questions are never ending right? I have been dealing with CIDP for three years. Once my neuro figured out the right combination for me I have been mostly stable for almost two years. At the start of my journey I was taking high doses of prednisone (80 mg per day) and IVIG every couple of weeks. I currently go for infusion every four weeks, and I take 10 mg of prednisone every other day. Unfortunately, it appears that the taper of the prednisone is starting to have an effect on my four week spread of IVIG. I start to show weakness a couple of days prior to IVIG. We were hoping to try a five week spread. I experience pins,needles,zaps,twitches at any given time, however I am able to tolerate all of that. The weakness, not so much.

    I’m very interested in opinions on cellcept. I think that is my next step. Need to get off prednisone.

    I also will pay the price if I over exert. It’s a balancing act. I am thankful for a solid 3 weeks of feeling almost normal. Maybe the cellcept – IVIG combo will get me back to a solid 4 weeks.

    It’s a bummer! Thanks for listening!
    Kathy

    July 24, 2018 at 9:51 pm

    Hi Mark – My neurologist prescribed prednisone for me 10 months after my diagnosis of CIDP(March 2016) along with IVIG every 4 weeks. Prior to prednisone I was given IV solumedrol which initially helped me regain some strength. I did the solumedrol while waiting for insurance to approve IVIG. I was in and out of the hospital three times while waiting for insurance approval of IVIG. Throw in a flu shot in the middle of all that which exacerbated the CIDP and in the hospital again. I had never had a flu shot before and was told it was important to get one because my immune system was suppressed. I will never ever get another flu shot!

    I honestly feel that the combination of prednisone and IVIG are what keep me stable, and let me lead a fairly normal life. At my worst I was not able to walk, sit, stand etc. without help.

    I started out on 80mg of prednisone every day. After 8 weeks I tapered to 80mg one day and 60mg the next. Then 80 – 40, then 80-20. Then 80mg every other day. I am currently at 25mg every other day. The goal is to be completely off in 4 months or so. I still get IVIG infusions every 4 weeks. It is my understanding that the taper of every other day gives your adrenal glands the chance to “wake up” and work again. If I can’t tolerate going off prednisone we will look at going on Cellcept.

    Side effects for me are not horrible, but they are annoying. Not a lot of sleep, sweating, moon face, I gained around 20 pounds, and my “fat” sort of shifted to my belly. Boo! I watch my salt intake, and try to avoid sugar. I crave baked goods. I also had to get a bone density test. I try to at least walk 15 minutes a day with a hill involved if possible. For me my hips/legs are the first place that get weak when those pesky bad antibodies start to build up. I also try to do some weight bearing exercise. I was going to structured PT/OT, but I became exhausted and was falling down so I decided I would take what I learned and do it at home at my own pace. Your muscles will atrophy quicker than you think.

    Best of luck to you. I hope my info helped you a little. Take Care.
    Kathy

    May 11, 2018 at 11:34 pm

    Hi Bryan,
    I joined the forum some time ago, but have not posted anything until now. I have read many of your posts. Our situations are very similar. I am a 55 year old female, and was first diagnosed with GBS two weeks after having the flu. GBS soon became CIDP. This all started in Jan 2016. I currently get IVIG every four weeks and I am stable. Now….Prednisone! Yikes. I most certainly have a love hate relationship with it. I am currently on 35 mg every other day. However, my neurologist had me on 80 mg daily for a couple of months. My taper then went to 80 one day 60 the next and so on. I had to show no signs of weakness before the taper began. I was also getting IVIG every three weeks when I was on those high doses of prednisone. It is a very slow process. What a bummer that you have had a set back once you got off the prednisone, but I am glad that you are responding well to the low dose. I am hoping to get to taper down when I see my neuro in June. I hope your adrenal glands start doing what they are supposed to do. I will continue to watch for your posts.
    Kathy