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    • #19674
      Jodi Enders
      Keymaster

      Doctors turn to plasmapheresis (plasma exchange) (Plasmapheresis – Myasthenia Gravis News), intravenous immune globulin (IVIG) (Intravenous Immunoglobulin (IVIG) – Myasthenia Gravis News), and sometimes both to help in different situations (Plasma Exchange Plus IVIG May Ease MG Symptoms, Boost Immunity | Combination Therapy Found to Work Better Than Plasma Exchange Alone | Myasthenia Gravis News). When prescribed medications aren’t enough to control an MG flare or crisis, pre-surgery to strengthen the immune system, or to help the body if steroids need to be reduced. 

       

      Plasma exchange removes the plasma from the patient and replaces it with healthy plasma from thousands of donations. IVIG separates the healthy antibodies (immunoglobulin) from donated plasma and delivers them directly into the bloodstream via a vein or port. 

       

      Have you ever received plasma exchange, IVIG, or both? Did it lead to improvement? What was the process like, and did you experience side effects? Does slowing the flow rate into the body help ease side effects for you?

    • #19738
      David S
      Participant

      I have been receiving monthly IVIGs for the last two+ years.

      I do not feel any side effects.

      The flow rate of the infusion, for me, starts at 90 ml/hour and is increased to 190 ml/hr.  The flow rate is increased every 30 minutes  over the treatment period.  I believe the percentage of the solution is 5%.

      The actual infusion last  about 4 hours each.  I arrive at the infusion lab at about 8am.  The IV needle is usually in place by 8:30am and the IG usually starts about 9am.  I am usually detached and on my way home by 1pm.  My Nurse, Rhonda, does a wonderful job and the needle is usually placed with one stick.  I do feel a bit uncomfortable when she is not there to care for me, as the other nurses often miss the first time.

      I do have some needle anxiety.

      Once hooked up and pumping I spend my time reading and napping.  Ibuprofen and Benadryl are administered before the needle is placed.

      I start pounding down water 2 days before the infusion to be sure I am well hydrated.

      Over the years I have tried infusions, 3 days in a row, every other month, but have decided I would rather go every month, as I find it quite uncomfortable to have the infusion needle in my arm for three days and two nights.

      Last year I skipped one of my infusions sessions so they ended up being about 5 months apart and was back to my cane and was pretty unstable.  I decided that IVIGs worked for me.  I understand that many get immediate results and feel noticeably better after their infusions.

      I do not feel immediate improvement when the treatment is completed, but I sure feel the difference when I do not get them.

      I have not had plasmapheresis.

      Scott

    • #19750
      Douglas Manning
      Participant

      <p style=”text-align: center;”>I’ve had both plasmapheresis and IVIG treatments. I am Achr+ and have fun the full gamut of treatment schemes since first being diagnosed and then experiencing my first “crash” about a month after first symptoms 8 years ago. Initially high dose Prednisone and plasmapheresis got me past the first crash without requiring ventilation. I left the hospital with an Rx for Mycophenolate, Mestinon, and Prednisone and received plasmapheresis treatments two times per week waiting for the Mycophenolate to come up to speed. It never really did and I had a second crash and need for ventilation about ten months later. Prednisone dose was increased and plasmapheresis frequency was increased to two times one week and three times the next for two months. During this time a series of scans identified that I still had the presence of a large thymus gland (without thymoma). So, thirteen months after initial diagnosis, I had a thymectomy and the surgeons discovered that the gland had developed ‘tendrils’ that appeared to connect to my parathyroid glands as well as lymph nodes in one armpit. The surgery was extensive to separate the the ‘tendrils’ from those areas; two of the parathyroid glands were removed and the work to free the thymus from other connections seemed successful. At age 59, this was a lot! So, the plan was to stay on a higher dose of Prednisone and the Mycophenolate dose was maxed out and cyclosporine was added. Within three months kidney function quickly degraded and cyclosporine was stopped and tacrolimus was substituted to continued poor kidney function. So that was stopped and my medical profile now lists that class of medicine as a “no-go” for me. So at 18 months post diagnosis I had a third minor crash (without ventilation) and we tried to switch from plasmapheresis to IVIG therapy. For the first month I felt really great, but symptoms returned and despite remaining on elevated doses of Prednisone and Mycophenolate, I became symptomatic after about three weeks. So we went to one treatment each month. At the time, my insurance company made the decision that IVIG treatments at once per month was not cost effective! (You’ll never have to worry about the “death panels” predicted by a certain party in the USA when  we have insurance companies, 😆). So we went back to plasmapheresis at twice per week, Prednisone, and Mycophenolate. At the time retuximab burst onto the seen and it was seen as a possible breakthrough. For many it has been, but for some reason my immune system went crazy and I had my worst crash yet. So, back to plasmapheresis, and continued Prednisone and Mycophenolate. With the help of my neurologist we reached out to a different hospital system for a second opinion. After three frustrating months of verifying once more that I had Achr+ MG they came to the conclusion that we didn’t stick with retuximab long enough. We gave it another round and crashed once more. So, back to plasmapheresis, Prednisone, and Mycophenolate. We at last decided that the Mycophenolate was not doing much so we tapered off and found that indeed I was no worse off it than on it. We also experimented with dose levels of Prednisone and plasmapheresis frequency. I developed a serious infection and crashed again. After the crash though Soliris (eculizumab) became available in the USA and we began to use that. Over the last 2 years we have been able to reduce the frequency of plasmapheresis treatments to once every two weeks. So life is predictable now and I haven’t had a crash since 2019. I tolerated IVIG quite well, as I do the plasmapheresis treatments. As time has passed and I look at the cost of Soliris, it is almost quaint that IVIG was considered too dear (not cost effective). But it is likely more related to the effort and huge number of donors it takes to create IVIG such that it should be reserved for those for whom it is the only workable option.</p>
      Whew! Long winded, but to conclude, both IVIG work well for me, IVIG perhaps a little better, but at a rarity and cost that makes living with plasmapheresis, Soliris, and relatively (at last) reduced dose of Prednisone an option I can live with!

    • #19756
      Charles Karcher
      Participant

      At my diagnosis and first hospitalization Plasmapheresis was utilized along with Mestinon and Prednisone.  After a week in the hospital I was discharged only to be readmitted approximately two weeks later.  Again Plasmapheresis was used and after a week discharged.  The same thing again.  Two to three weeks and back in the hospital.  My doctors apparently love Plasmapheresis for they tried it for a third time.  After that failed I guess someone got that was not going to work.( the definition of insanity is doing the same thing again and again and expecting a different result).  I was given a 5 day course of IVIG and discharged with orders for biweekly infusions of IVIG.  I was on IVIG for only 6 weeks before changing to Soliris.  I had no side effects from the infusion of IVIG.  I did suffer from  great deal of fatigue during the course of taking IVIG but cannot say for sure if it was due to the IVIG or just being in and out of the hospital over the course of three months.  At least from me Plasmapheresis was a near worthless therapy that only delayed the proper therapy from being implemented.

    • #19775
      Richard Perez
      Participant

      Richard

       

      I was in hospital for 2 month, 1 month ICU after 4 MG crisis’s   could not swallow . Feeding tube down my nose , I didn’t like that .    All this time I was on IGIV on and off didn’t help. They finally

      decided on  Plasmapheresis or Plasma Exchange 4 times once a day , by the 4 day my throat open up I could swallow again I thank GOD .   Plasms Exchange help, now Iam back to working 40hrs, IGIV 3 times a month, prednisone 10mg 1 x day, cellecpt 500mg  2 x a day , mestinon 3 time day 60mg

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