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    • #19290
      Tonya Hull
      Participant

      I have been with my neurologist for over 30 years. Over that time, I have had 3 crisis and 2 IVIG treatments. My Dr always immediately puts me on a high dose of steroids, (50+ daily).
      Just wondering if this the normal course of treatment or if my Dr is just “old school” and that’s what he’s always done, so continues to prescribe. He is also very cautious and weans me down very slowly. Sometimes can take a year to get back to 20mg twice a week. I’m frustrated with all the side effects that come with this and wonder if anyone else has had other post IVIG or crisis treatments that do not involve high dose steroids?

    • #19294
      David S
      Participant

      Hi Tonya –

      I often wonder if the treatment that I receive is appropriate and have wondered if I should seek another opinion.  Not to verify that I have gMG, but to verify that my current treatment plan is appropriate.  I have not seeked another opinion because I do not want to go through the diagnosis process again.  There seem to be so many variables between those that have MG and the treatments that they receive.  All seem to consist of the same elements – Mestinon, Prednisdone, Imuran or Cellcept or other immunosuppressants, although the ammounts of these drugs vary.  Seems that most do not have regular/maintenance IVIGs.  I do not understand How the Neuro’s determine how much of what and when.  Art/practice.

      I have been treated for gMG for about 3 years now although in retrospect, my symptoms started a year or two before.  I have not had a Crisis that required hospitalization.  I have been close a couple of times.

      I do IVIGs every month and my Prednisdone dosage is 10mg/day.  I also take Mestinon and Imuran daily.  I have never been on high doses of prednisdone.

      The one time I was slipping into a crisis, double vision raised it’s ugly head as well as some other symptoms, I immediately increased my Prednisdone to 20mg/day and stayed there for a number weeks.  I did contact my Neuro and he approved this increase.  I did wean back down to 10mg/day.  The wean down back to 10mg/day took a couple of months.

      I feel fortunate that I was diagnosed relatively early, in my disease, and that my progression into severe symptioms was stopped – so far.

      I have no idea how much of a Prednisdone increase is warranted after a crisis, but it apprears that the ammount varies from patient to patient.

      My VA Neuro’s treatment is on the conservative side.

      I would consider my condition to be stable, not in remission.

      Good luck,

      Scott

      • #19297
        Lisa Blutman
        Participant

        All doctors and patients must decide upon the correct course of treatment for their MG care. It was high-dose steroids that put me in a crisis where I suffered respiratory failure and kept me in the hospital for a month. This was followed by 5 days of IVIG and two subsequent treatments of 3 days of IVIG. I currently take mestinon and cellcept and have no subsequent issues.

        Best of luck in your treatment,

      • #19304
        Mary Ann
        Participant

        What is IVIG???   I’m new and scheduling for infusions.  Is that what you are talking about? What are the infusions supposed to do?  My crisis symptoms are subsiding a bit after 12 days of Rx – but finding things I thought were “old age”, that have worsened during this crisis time, so figure probably a part of MG….  But wish there was one doctor who isn’t so busy to be able to put the breathing, eyes, heart, etc all together…. and connect the dots with me.   Thanks for any advice.

         

      • #19382
        Robert Davidson
        Participant

        My Neurologist specializes in Neuro-Muscular, MG, and ALS diseases.  I’ve been told by other doctors that he has one of the largest MG practices in San Francisco.  I was diagnosed 10 months ago when I was sent to the ER with breathing issues.  I was in the hospital for 9 weeks during which I had four plasma flushes and two IVIGs.  I was on 50 mg of prednisone (plus Imuran and Mestinon.) Upon discharge I had 5 weeks of home IVIG but he had started reducing the Prednisone to 40 mg  Over the last six months he has reduced the Prednisone from 40 mg down to 20 mg, then 10 mg, then 7.5 mg, and now 5 mg (considered low dose.) He said the weaning was to allow the Imuran to take full effect which takes approximately one year. The goal is to eliminate the Prednisone in another 2 – 4 months.

        • #19383
          Robert Davidson
          Participant

          Intravenous immunoglobulin (IVIG) is <b>a compound that consists of immune globulins (immune proteins) that are usually administered into the bloodstream</b>. It is used to treat patients with severe or rapidly worsening myasthenia gravis (MG).  The treatments, at least mine, were with donated globulins.  MG is a rare disease. There is no one doctor that handles all the issues.  In the hospital, and now post discharge, I saw an endocrinologist, lung (breathing) specialist, and my cardiologist as well as an IR doctor who installed and monitored my PICC line for nine weeks.  All under the overall  management of my neurologist (who also helped with the double vision.)

    • #19295
      KATHERINE TIJERINA
      Participant

      I am seronegative On Prednisone 25 mg I just finished up 6 months of IVIG. I want off this prednisone. Mestonin really doesn,t work that well. We are currently looking at other options.

    • #19296
      mollie geiger
      Participant

      when i went into my first crisis and my lungs collapsed my older doctor put my on 80 mg of prednisone which was helpful of getting me able to breath on my own again after being intubated for three weeks. the week after i got out of the hospital i did a week of ivig and my larger muscles completely stopped working from the large does of prednisone so i had to be rushed back into the ICU where we did the plasma transfusion   .  the IVIG does NOT work for me but my doctor loves it.  i would love to find a younger neurologist that would have different strategies other than just prednisone/cellcept and that’s all. i’d really love to see a functional doctor as well and see what they can do for other aspects of my immune health

    • #19298
      Mark Shear
      Participant

      When I went into a crisis in February my doctor increased the prednisone to 30mg and I got IVIG as well. Prior to the crisis I had finally gotten down to 10 mg of prednisone after a year of my doctor slowly reducing my prednisone dosage down from 60mg per day.  I think they are all cautious about reducing prednisone too quickly as that too can cause bad things to happen. I was also switched from IVIG as it wasn’t helping and my symptoms were actually getting worse so I was switched to plasmapharisis for 5 times while they were working on getting me onto a different infusion drug, Vyvgart. Finished my first 4 infusions of that and it seems to be helping incrementally. I still have high hopes for that and don’t know when the doctor will want me to get more infusions of that but I know it is a minimum of 50-72 days before they do that again. It has allowed me to gain back some energy and have more breaks during the day from double vision. Doctor also decreased my prednisone to 25 mg from 30 mg before the infusions. I generally also take mestinon 4 times a day and I can certainly tell when it starts wearing off as that is when the double vision comes back. Hope this is helpful.

    • #19300
      Joe B
      Participant

      My first symptoms became life threatening within two weeks so first visit to a neurologist and i was diagnosed. First few days started Mestinon 60/4hrs and 20/day prednisone. Symptoms got worse. Increased to 40/day prednisone. Getting worse. Increased to 60/day. Symptoms start to decrease. 4 months later most my symptoms are from the long-term steroid use. Slowly decreased for 2 months to zero and went to IVIG once per month. Now mild head discomfort and overall tired at end of day. Otherwise normal. Whole time Dr.s mission was to get of steroids. Its the easy way to get life back quick but comes with other dirty burdens.

      • #19305
        Mary Ann
        Participant

        Thanks for that helpful note since I am new at this… though I’m sure I’ve had it a long time but just had crisis which caught it….  I start the infusion that you are doing now in the next week or so… Vyvgart … What is it supposed to actually do???  What signs should I watch for?   When I’m tired, my double vision hits… now I realize it is part of this whole picture. I’ll appreciate any help, suggestions you have…

         

      • #19325
        Mary Ann
        Participant

        Thank you!!! Yes!!!! very helpful indeed.  I am new patient and will start Vyvgart for 4 weeks soon…. also interesting to realize that the double vision was when the mestinon wore off… I’m taking Pyridostigmine.  Is that the same thing??? It really helped the droopy eye lid which was clear closed to open up after about 24 hours.  ..but do still have double vision when tired… also shortness of breath, weakness in picking up things, standing up, neck tired, too tired to talk… etc….. fatigue is big when the Predisone wears off … It seems to last about 5 hours between… so 7-12 and 5 … I’m at 60 mg a day.    I really appreciate hearing your story!!!!  I’ve been on for about 2 weeks now.

         

         

         

    • #19303
      Emily
      Participant

      I was diagnosed just over a year ago and that was when I went into a crisis and was put on a ventilator. After that, prednisone 40mg daily for about 4 months and IVIg while in the hospital. Weaned down off the prednisone down to 7.5mg by November but not without losing almost all my hair, getting the “moon face” and getting prednisone induced myelopathy. Then whamo-crisis number 2. Intubated again and toying with the idea of a trach since I wasn’t able to wean off the vent. Anyway, prednisone back up to 20mg, IVIg 5days in a row. I go for IVIg 5days in a row every month since Dec and have weaned down to 15mg of prednisone. We are now trying to space out the IVIg to every 6 weeks. The mestinon doesn’t really help me either-just makes me go to the bathroom. The IVIg does work for me tho! I hate the prednisone so much!!

    • #19377
      Lou Venema
      Participant

      You have to keep the doctor in the loop if you are having problems with the treatment. When I started the journey in 2009 I was was put on all the different medications. Luckily I was switched to another nuero team and that made a big difference.

      After only problems with the medications was IVIG tested. I had no problems with the first infusion so a plan was put in place. I started at 3 500ml infusions every 4 weeks. After problems were worse again I was bumped to 3 times every 3 weeks.

      IVIG handles my problems very well, however, I still have some issues. My vision has changed and I notice it quite often but I learned to change what I was doing or take a rest. If working hard, my vision will go wacky but I can often adjust. The worst is when my energy  just goes away. I have learned to identify when that is happening sooner and make a rest stop before things go bad.

      I need to watch what is happening as I do stuff and am aware of warning signs that indicate I need to do something.  Prevention is very important to handling MG. My infusion nurses are great at spotting things and my nuero team is very accommodating.  They are quick to refer me to another group for testing to verify if I have something else happening or if I need to change my routines.

      Most doctors are not very familiar with MG. If you are having problems with your treatment discuss it with your doctor. If  necessary, ask for a referral to another specialist for some advice on the problems you are having. Your regular doctor may also be very helpful and may have some recommendation for your neurologist.

    • #19385
      Robert Perrou
      Participant

      I have had IVIG twice in the las 3 years. Each time my Prednisone was raised to 60 mg and then gradually lowered. I am at 10 my currently,

    • #19394
      CathyF
      Participant

      Diagnosed 3 years ago when admitted into the hospital during a mg crises.  Intubated, feeding tube, fentanyl, propofol, IVIG, metronidazole for aspiration pneumonia, prednisone 60 mg daily, and pyridostigmine bromide.

      Currently only on prednisone 5 mg every other day.

    • #19395
      Laura Shaughnessy
      Participant

      I’ve had MG for 21 years. I’m grateful I’ve never been hospitalized or had respiratory issues. I’ve managed with 30 mg of Mestinon every 3 hours. I also have Crohn’s disease which is currently in remission. I’ve chosen not to go on immuno suppressant drugs with MG. When my Crohn’s was out of control I went on many different meds ALL had side effects that created need for more medications to control the side effects. Hence the reason I’ve chosen not to be on any MG immuno suppressant drugs. I also am unable to take steroids . I stay fairly active but can’t do repetitive type things biking, hiking or anything that demands constant muscle needs without a break. My vision is doubled after 20 minutes of computer use & I no longer read for longer than 20 minutes ( I use audiobooks), ptosis when facial muscles are tired or overused , leg muscle challenges when climbing stairs. My neurologist wants to try IVIG to see if symptoms will improve. We tried increasing Mestinon to 60mg but gastro side effects made that difficult. I’m frustrated with taking to little Mestinon & your weak take too much & your weak. I also thought it might be nice to see what it would feel like if MG effects were reduced or eliminated even if just for short period of time. I’ve resisted so far because I don’t have a clear understanding of side effects of IVIG on someone who does NOT take any other medications . Is there anyone who can speak of using IVIG occasionally to reduce muscle weakness and or reduce the amount of Mestinon taken. I thank you for your time in responding. Someone who’s tired of being focused on taking meds every 3 hours .

      • #19396
        Mark Shear
        Participant

        I took IVIG for many months without any side effects at all. I can not say if or how much the IVIG helped. The first series of IVIG seemed to allow my prednisone dose to be reduced over time but in February my symptoms got worse. So my doctor changed my infusion to Vyvgart. Before they could get that going, I had to have 5 rounds of plasmapharisis.  The first round of Vyvgart (4 infusions) has helped incrementally.

        I don’t want to sound like a commercial for any approach.  I am now feeling much less fatigued and my double vision is not constant during the the day. In other words, I have short to medium range eye clarity on and off through out the day now.I am currently down to 25mg of prednisone and take mestinone every three hours through the day up into the 7pm hour.  I stop taking mestinone at that point and just watch tv instead of any reading to give myself a break from the meds and it helps keep my calfs and feet from cramping during the night. It seems everyone has a different story, how the disease affects them and different reaction to the available medicines. So if your doctor is suggesting a particular drug or drugs and you trust that doctor, I would give it a try as the side effects are minimal and don’t seem to have long term affects over short periods of time. The only exception may be the prednisone both in side and long term effects. That alone is a good reason to use IVIG or Vyvgart.

    • #19426
      Susann
      Participant

      As a doctor who also has 11 autoimmune diseases there is no reason it should take a year to wean off steroids. I get IVIg every three weeks and take high dose mestinon I have failed every other treatment. You can actually be on 14 days if 40mg of prednisone without having to wean it. I don’t know what dose you are placed on for flares but you may want a second opinion about taking a year to wean off. It seems overly cautious

    • #19447
      michail
      Participant

      Prednisone increase works fast (usually 2-3 weeks for me, with first signs of improvement usually by the day 10), so increasing the dose of prednisone is probably the correct thing to do. Once you are stabilized, one can try and figure out if different treatment is needed.

      Prednisone reduction is a slow process, I am not sure if one would need a whole year to go back to the baseline, in my case that would be 2-3 months; once I tried to do the reduction faster and ended up in emergency.

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