Myasthenia Gravis News Community › Forums › Healthcare and Treatments › Port to Help Ease Myasthenia Gravis Treatments › Reply To: Port to Help Ease Myasthenia Gravis Treatments
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Member<p style=”text-align: left;”>I think the need for ports is really related to the evolution of your case of myasthenia gravis. In my case MG has been an ever present and relentless traveler in my life’s journey since 2014. The neurologist and team that support me have been positive, helpful, and forward-looking. I have been what I hope is a good natured, knowledgeably informed and compliant patient. On top of that my spouse has been tireless and equally relentless partner with and for me. I share all this to tell you that plasma Apheresis treatments have been part of my life on a schedule ranging from 2 times per week to now when they are once every two weeks. To get me to this reduced schedule, we finally found an add on therapy in Soliris and moderate doses of oral prednisolone and pyridostigmine. In the mean time we’ve trialed IViG, Rituximab, cyclosporine, tacrolimus, and mycophenolate mofetil and I had a thymectomy. It has been exhausting at times so after 3 years of very frequent needs for access for treatment we discussed having access ports installed. So in 2019 when Soliris was the better part of a year from approval for use in the United States, we looked at trying to make this one part of my a little easier. After some research I had Bard Powerflow ports implanted in my chest. Oh my, what a difference it has made! It speeds up treatment, access is always a breeze and as painless as can be. So, a long story, but if the frequency of your Apheresis treatments is anything more frequent than once per month, then I would seriously consider this option to allow access for your treatment.</p>