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Stiff Person Syndrome: Want to connect with others

Brain & Nervous System | Last Active: Jun 9 10:56pm | Replies (210)
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@ess77

@sheeva888, and all...Thanks so much! Great info for us. May I ask about the IVIG infusions...I had them several years ago in 3-day sessions as well, for what was believed to be Myasthenia Gravis. I don't have it, but do have double vision and other symptoms. The infusions actually helped me a lot even though not for MG. What are they using them for in your treatment? Helpful? How?

Also, is Gabapentin helping you and why are they using it for you? I also took it for years for pain and such. I'm off it thankfully, as it caused brain fog and some other issues, but I was grateful for the drug. It makes sense for my son to take it as it addresses nerves directly and his new doc mentioned he may try it.

I was also on Lyrica and several other heavier drugs that I'm now tapered off for a couple of years. I deal with pain with Medical Marijuana, as does my son, and steroid cream/Voltarin/magnesium creams....using more topical medications now to avoid my gut and absorption issues. With Robaxin, Duloxitine, Xanax, and CBD gummies. A good cocktail of various types of relief...(no alcohol.)

Thanks again and be well, be blessed...Elizabeth

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Replies to "@sheeva888, and all...Thanks so much! Great info for us. May I ask about the IVIG infusions...I..."
sheeva888 | @sheeva888 | Aug 12, 2023

Studies show that IVIg may slow the progression of SPS. My neurologist recently published a study that shows IVIg is typically effective in patients without allergic reactions and tolerance for about 3 years. After that time, some patients notice a waning affect, which I have. However, I know it helps because my dose was cut in half as an experiment for 3 months and I started to need a mobility aid. It allowed me to stay up a bit later, walk better, and generally improved quality of life. It took 5 months before I noticed a difference.

If patients can’t tolerate IVIg, doctors may try Rituximab and/or Plasmapheresis/PLEX. These are a bit more serious and may require hospitalization. Most insurance companies require trying IVIg before applying for other IV treatments. Even then it might be a battle for approval.

My neurologist likes to do an oral med combo of Diazepam and Baclofen or Diazepam and Gabapentin. I am on all 3 as he doesn’t want to increase the Diazepam. I am on 20 mg total a day without an increase for several years. Most patients I know take 30-40 mg per day along with other meds and IV treatments. I don’t find the Gabapentin to be very helpful.

I know one patient that uses Robaxin and she finds it very helpful.

I suggest trying things one at a time to evaluate effectiveness and side effects. Every day is basically about self-care for me. Everything I do is to help with pain, tightness, anxiety, fatigue and depression.

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