Plasmapheresis cessation
My wife was recently diagnosed with MG and had a thymectomy two and a half months ago. My expectation was that she would be on medication to control symptoms from then on. I was pretty shocked when my wife’s neurologist ordered plasmapheresis and there doesn’t appear to be an expected date when these treatments will stop. My wife had a port implanted in her chest in order to get these treatments and it really bothers her. I am hopeful that she will no longer need the Plasmapheresis treatments in the near future. Does anyone have experience with this? Will it end?
Thank you.
while in hospital Ihad 10 treatments go plasma aphersis did not work at all still had double vision slurring speech I couldn’t walk to far my head was dropping could not hold it up and had trouble swallowing I needed thicket also a cough Brain fogfor16 days in hospital couldn’t pick up my arms and needed to be fed! . It took about a month after being on steroids and mestion being able to walk without a walker I even fell out off bed couldn’t get up my muscles wouldn’t work . Hello
thank you for reaching out to us on your wifes behalf. I got a thymectomy last month. So far I'm on reduced medication but I still get monthly IVIG. My reason for sharing this is because many patients react differently to the surgery. It can also take our bodies awhile before we see any changes. My neurologist told me it can take up to a year before I see any results from the surgery. Trust me, I understand your frustration and concerns for your wife. My husband is the same way when it comes to me.
Continue to support her and reach out to us about any updates on how she's feeling and on how you're feeling. Best of luck to you guys. - Jazmin (team member)Thank you Jazmin. I am hopeful that she experiences some benefit soon. It is such a rollercoaster. She just went to the ER and was admitted last Thursday night. I’m Thinking she had a myasthenic crisis. It is very traumatic for her, me, and our young daughters. She was discharged on Sunday night but the neurologists never really pinpointed what happened.
Hi Jodi, thank you so much for responding to my post. My wife is getting plasmapheresis because IVIG caused some issues and it also seemed to require her being hospitalized. I guess they decided on a port for some reason. I don’t really know if her Neurologist is the most qualified to carry out her care. I am definitely interested in my wife getting a second opinion and have mentioned it to her. I have even tried to connect her to a support group that can provide their experience and offer advice. I can’t force her though. Thanks again for your reply. I hope things will work notice soon so that she can not require so much of the Plasmapheresis.
had10 treaments did not help me. Couldn’t try IVIG cause I had thymona cancer stage 3 would not give to me for that reason.
, hello! I love to see you advocating for your wife. I had a thymectomy myself six months ago. She is still feeling no improvement yet, is my guess? But I hope to hear she is doing okay! Your frustration is heard loud and clear! I give you my deepest sympathies and understanding.
I have not personally had a similar experience. However, I have read hundreds of patient experiences with MG, and everyone responds uniquely to treatment!
This article, https://myasthenia-gravis.com/treatment, explains some about MG treatments. And this one, https://myasthenia-gravis.com/plasma-exchange-ivig, specifically covers Plasmapheresis and IVIG. Did she happen to receive a port due to the threat of vein collapse? If not, what was the reasoning if communicated to you?
Does her neurologist have previous experience with a range of MG patients? Have they been taught by someone who has? If you are concerned with the neurologist, this is very common with MG patients and healthcare. However, sadly, part of this is limited research on rare diseases and MG. Thus it isn't always clear which treatment route is best for a patient in certain circumstances.
It can take a while (several months to a year and possibly longer) to get in with an MG specialist. Someone who actively researches the disease. You could go ahead and try to schedule a second opinion if this is feasible. This may require traveling some distance as well.
I am sending positive vibes! Please let me know if there are any specific questions I can help you with. - Jodi, Myasthenia-Gravis Team Member
