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  • Port to Help Ease Myasthenia Gravis Treatments

    Posted by Jodi Enders on June 15, 2022 at 12:23 pm

    Columnist Shawna Barnes recently published about her new port. A port is a device implanted beneath the skin and helps eliminate the need for IV needles to the vein to receive IVIG treatments. 

     

    Do you have a medical port to help with the ease of MG treatments or other purposes? Does it help you physically and mentally to be more comfortable? Would you recommend it to others? If not, what precautions do you advise?

    Winston D Roden replied 1 year, 11 months ago 5 Members · 4 Replies
  • 4 Replies
  • Charles Karcher

    Member
    June 15, 2022 at 8:06 pm

    When I was on IVIG my infusions took 3-4 hours to complete.  The infusion center was able to give me a room to myself so I had peace, quiet and privacy.  The only side effect was fatigue.  I soon moved on to Soliris which only takes 35 minutes to infuse.  In some cases I spend more time waiting on the pharmacy to mix the solution.

    I am now awaiting approval to switch to Ultomiris which is only administered every 8 weeks.  Fortunately I have very good veins.  Switching to Ultomiris hopefully will preserve my veins even longer.  Right or wrong I see not getting a port to be apart of my battle to preserve my way of life and refuse to give in to this disease.

  • Douglas Manning

    Member
    June 16, 2022 at 3:54 am

    <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>

  • Lou Venema

    Member
    June 22, 2022 at 7:54 pm

    Getting a port was the best thing I did! Getting an IV started was beginning to be a real problem.The veins usually used became weakened. Very few IVs started and worked for the whole infusion. Either the vein could not be accessed of the vein would blow and we had to start over again.

    I have only had one problem with the port. The end of the tube accumulated a small “flap”. This would not affect an infusion, only the push/pull to verify good vein access. The push worked fine but the pull would close the flap. That was easily corrected and it has been fine now for several years.

    I recommend that if need infusions get a port right in the beginning.

  • Winston D Roden

    Member
    June 27, 2022 at 7:38 pm

    A simple statement: I agree a port is the way to go.  After some time my veins were failing and a nurse mentioned a port.  I have never regretted it.

     

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