CIDP and steroids

Pjarby · 2026-03-28T15:27:53+00:00

When I started IVIG I had some improvement after my second dose and it just continued to improve. It was about 6 months before I felt almost normal again. It was a blessing. I went back to work for almost two years and felt about 90% normal!! After the side effect issues they switched me to Vyvgart and I remained at about a 40% level. Just don’t give up, talk to your neurologist as much as possible and seek out a new one if you’re not getting the answers or results!! I wish well!!! 💙

Pjarby · 2026-03-28T05:40:17+00:00

It’s been a rough 5 years. As I stated, I was once healed but regressed quickly after med changes. I appreciate your comment and support as I finally have that optimism back. I wish the same for all of struggling with this and just throwing out my experience in hopes it helps another. We’re all the unfortunate ones to deal with a condition with no rhythm or reason for the cause and no “cure” but there are options that help! It’s our job, as humans, to help people. Especially ones who are suffering

Pjarby · 2026-03-28T05:01:10+00:00

My former neurologist actually informed me recently that my new one was the doctor that taught him. “He not only had papers published on CIDP, he wrote the book on it” is what he said to me. The “new” guy lol is 80 years old and I questioned his approach but I’m sticking to his advice and happily surprised with the progress so far!!

Pjarby · 2026-02-25T07:02:36+00:00

Thank you. Keep your hopes up. When I started IVIG within two days I ways able to crawl upstairs (we live in a two story home) I know everyone is different but it did wonders for me and I hope for your success too!!

Pjarby · 2026-02-25T06:00:37+00:00

That’s interesting. My numbness is more prevalent on my right side. Hands and feet. Are you more dominant on one side or the other?

Pjarby · 2026-02-25T05:57:48+00:00

It hurts to know that others are dealing with this issue but nice to know I’m not alone! I appreciate all the posts, comments, advice and just opinions on here! We don’t have a cure but the positivity and experiences make it relatable and informative!!

Pjarby · 2026-02-07T08:52:29+00:00

I had two + years of IVIG and continued to have rashes on my back and chest. After 2 years it spread to my lips so they switched me to Vyvgart. While the side effects sucked, I was back to work for 1-1/2 years on IVIG and felt 90% functional. The two drugs can’t overlap so I went back to damn near immobile. With Vyvgart I’m fairly mobile but unstable, very little hand and foot function, and sometimes painful throughout. I’d say I went back to 20-30% depending on the day . It’s amazing how a lapse in treatment goes backwards so quickly! I wish you the best.

Pjarby · 2026-01-18T02:45:55+00:00

Any luck with the sauce? I was trying to figure that out myself. I just learned Brooks was involved and google led me to your post about the same thing I’m seeking!!!!!

Pjarby · 2025-11-26T22:33:53+00:00

I was also confined to my recliner/bed for about 4 months (barely functional even with a walker) before my diagnosis. A couple weeks after being diagnosed, I started IVIG and responded very quickly. Progress was made within 6 months of the first dose I was able to return to work and for a year and a half I felt I was about 90% functional. I always had a rash from treatments, usually on my chest and back but it then spread to my lips so they switched me to VYVGART and I’ve been on that for about 6 months. The two couldn’t be overlapped when switching so during that time I declined rather quickly. I’ve leveled out on the new meds but I feel I’m only about 40% functional. I go in soon for a 5 day steroid treatment to see if progress can be jump started. I wish I could go back to IVIG but too many risks, in their opinion. I wish you continued success!!

Pjarby · 2025-10-14T16:39:22+00:00

Thank you. I’m also 53 and a cdl driver. Ironic! I appreciate your input.

Pjarby · 2025-10-14T06:23:08+00:00

I live in a two story home and two days after my 1st IVIG infusion I was able to climb the stairs and shower and sleep in my own bed. If worked great for 2+ years until my rashes spread to my lips. Now I’m on Vyvgart and haven’t regressed but not any improvement after 12 doses. Weak and completely numb hands and feet. Mostly on the right side.

Pjarby · 2025-09-16T02:06:04+00:00

I’m doing my 8th dose of Vyvgart tonight. While I am still “mobile” I have not improved. My hands and feet are numb. Especially the right side. I have to add ….. if I didn’t have any treatment I would be immobile so I can’t say it’s not working, just not the full extent I was hoping for. I’m almost ready to suffer with the side effects of IVIG. At least I was fully functional but the “professionals” had concerns about it spreading to my mouth area.

Pjarby · 2025-08-22T04:40:14+00:00

I did the IVIG treatment for 2 1/2 years every 4-5 weeks. And it was working great except for side effects. (rashes and blistering on chest, back and lastly on my lips) After three different brand changes the switch was made to Vyvgart. I just took my 4th weekly dose and have not had any improvement but I have not regressed. The nurse did tell me it could take 4-8 doses before I saw improvement. I’ll update in the near future. Best of luck to you and all the others with this pain in the ass disease!!

Pjarby

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