Morgan
Forum Replies Created
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Hey @ashleygregory757!
I hope you’re enjoying your much needed vacation!
I started CellCept (mycophenolate mofetil) this past July. Tacrolimus ended up not working out for me. I seem to be doing better on CellCept along with Prednisone and IVIG infusions.
I hope you’re able to get your IVIG infusions at home. I’m thankful we have that option. Like you, I’m trying to get insurance to approve Rituxan infusions. The long-term use of Prednisone has caused vision problems and my neurologist doesn’t want to wean until I have a backup.
That’s great how much Firdapse has helped you! That was a big improvement in just 2 months! I have not tried a TUG test. In the beginning when trying to figure out a diagnosis, physical therapists had me doing timed sit to stands. My balance, I’m afraid, would not be stable enough to do a TUG test without using a walker.
Morgan
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Early on when my symptoms first appeared I started having falls. As much as I hated to I knew I needed an assistive device for safety. I thought a walker would be the best option. I started with a standard then upgraded to a rollator. I relied on it pretty heavily in the beginning. After starting medication I could take short shopping trips without using it. Unfortunately, my symptoms came back and I had to use a wheelchair for a short time. I am now back to using the rollator again. I hate the vanity part about it, too, but safety is more important.
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Yes, @ashleygregory757.
I’m currently taking Tacrolimus along with Prednisone and IVIG infusions for my LEMS treatment.
I was doing well just taking IVIG and Prednisone but as my neurologist slowly weaned the Prednisone my symptoms came back. He first suggested adding Cellcept but after blood work he decided to try Tacrolimus.
I think the Tacrolimus has helped a little but I’m not back to how I was when I was on the high dose of Prednisone. I have to have blood work every 4 months while taking Tacrolimus to check levels. I’m currently taking 4mg but I’m not sure how much it can be increased as long as the level remains low. I was hoping I would get a “boost” from the last IVIG treatment being on Tacrolimus but unfortunately I have not.
Thank you for the topic! I hope I answered your question.
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@ashleygregory757
Yes, thankfully! It has only been two days on the increase but I think I am a little better. When I increased prednisone the first time in 2021 it worked fairly quickly.
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Hi @pricewool,
Great topic! I decided to kick excess sugar about 2 months ago. I always heard about how toxic sugar is but I had no idea! My one vice is coffee. I didn’t realize how much I was consuming in my creamer because I bought the “natural, healthier one.” Then, I started reading the sugar content on dressings, sauces, condiments, etc… Yikes!
I was watching TV and came across Dr. Fuhrman’s Nutritarian program. It’s more plant based but the foundation is eating GBOMBS (Greens, Beans, Onions, Mushrooms, Berries and Seeds) everyday. I still eat lean animal protein and dairy but incorporate GBOMBS in my diet. What a difference it has made!
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Hi @ashleygregory757!
Yes, my neurologist increased the prednisone to 25mg for 2 weeks then to 20mg. I was on 15mg before the increase but started out on 50mg in August 2021. I was on 50mg when I started IVIG and continued to do well while slowly weening until the last couple of infusions.
I’m sorry to hear you may be having some of the same issues I am.
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@ashleygregory757
I had a televisit with my neurologist yesterday and if my labs turn out to be okay I will start Rituxan. He first mentioned CellCept but I had questions so he suggested Rituxan. Thankfully, I had read Lori’s column so I was a little familiar with it!
The IVIG infusions are not as effective as they were in the beginning since my neurologist slowly lowered prednisone. My leg weakness and fatigue is back.
I’ll continue IVIG for now and hopefully I’ll hear back from him soon with a plan.
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Thank you, @ashleygregory757, for this forum post.
I asked my neuro to run this lab and thankfully it came back negative! I am P/Q type antibody positive.
Yes, I think this is a good test to repeat in the future. Correct me if I’m wrong but from what I have read SOX 1 is to detect SCLC (Small Cell Lung Cancer)? If so, I would still get a PET or CT scan to make sure I rule out everything out.
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I am currently taking 50mg of Prednisone and I started IVIG October 1-4. My Neuro is hoping to wean me off Prednisone if I have success with IVIG. The medications for LEMS I can’t take because I have epilepsy.
I’m newly diagnosed with LEMS but I was first diagnosed with MG. I was put on Mestinon but it didn’t help. I started having breathing issues and could barely put one foot in front of the other so one of my neurologists put me on Prednisone. It helped immediately but I hate the moon face & weight gain. 🤦♀️ I hope the IVIG helps.
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Hi @pricewool and @ashleygregory757!
Those articles and forums are great! Thank you! Yes, it can be overwhelming.
The first IVIG treatments at home went really well. The loading dose was 4 days, then it will be 2 days every 4 weeks. The brand I received is Gammagard Liquid. I was thankful I didn’t have any side effects. Price, I read you didn’t have a good experience with that brand but I know like with all medications it affects everyone differently. I’m curious if the high dose of prednisone I’m taking possibly kept me from having any side effects?
The great news is today is 2 days post last treatment and I seem to have a little bit more strength! I noticed I haven’t had to use my walker as much around the house. 😀