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    • #18810
      Alan Wilgus
      Participant

      I was diagnosed with ocular MG a year ago and resolved on its own after a couple weeks. In March my ptosis returned along with trouble swallowing, talking & chewing. After one week of Mestinon 60mg (2 tablets 3 times daily) with no relief, prednisone 20mg (2 tablets daily) was added and after a week symptoms resolved.

      Next week I am scheduled to travel to Morocco on a 23 day vacation. Any tips international travelers my have as far as preparing for or preventing MG related problems would be appreciated.

    • #18816
      David S
      Participant

      I also, am interested in the feed back you get, especially flight stuff.

      Scott

      • #18836
        Barbara E.
        Participant

        Ok, here we go… First, I’d recommend talking to your doctor about your travel plans. See what he/she recommends for various scenarios, including additional medication that you could bring in case needed. On my last trip, these as-needed medications included antibiotic/antiviral, Prednisone, and a few others. Luckily, my doctor and I have a good working relation and he trusted that I’d know when I’d needed to take something. If you’re traveling from a base point, you’re doctor may be able to give you contact information for someone to see if you become ill in that area.

        For anyone on IVIg who might miss 1 or more treatments, ask your doctor if you can switch to subcutaneous infusions (SCIg) instead (at least while traveling). But you should try this ahead of time to allow enough time to practice and get comfortable with the proceedure before your trip. After a training session, we can administer SCIg ourselves without medical supervision to continue our treatments even while traveling. Also, Hizentra Ig vials don’t require refrigeration.

        In addition, you should bring multiple copies (for luggage, carry on, etc.) of documents outlining your medical history, current medications and a list of medications that you (or MG patients in general) should/must avoid.

        The last suggestion is to buy travel insurance! The many companies offering various policies for your trip could have various options. In addition to recovering money (all or part) for cancelled plans (flights, hotels, excursions) due to illness or injury. your destination may be an area where making emergency return travel difficult/impossible. For that situation, look for a plan that includes emergency evacuation transportation that will get you home (or your country) in a specified time frame. This can make the world of a difference to you emotionally and physically!

        Of course, you may not want or need to do all of these things. But, depending on your health and travel situation, they may help. Have a marvelous and memorable trip!! Post pictures of you adventures for us to see!

    • #18817
      Diana M Kent
      Participant

      Tips for travelling interests me as I shall be making a trip to the mountains onmy own to join, once there I shall join a walking group of new fellow walkers. Is it better to advise the leader of the group as to the existence of MG? or better to hope that all will go smoothly.

    • #18818
      Andy Coyne
      Participant

      I would be very interested also. I’m planning a trip to Australia from the U.K at Christmas that’s about 23 hours flying!

      • #19193
        June Robertson
        Participant

        Indeed it is Andy. I am an Australian myasthenic(of 60 years duration) and have travelled that route(in reverse) numerous times by myself. Also to Japan, Indonesia, Greece, the Continent….I wear a Medic Alert bracelet which registers a phone number in Australia with links to my doctor. It also says “Myasthenia Gravis. Caution sedatives, anaesthetics, antibiotics”. I always feel quite safe knowing that if I couldn’t communicate, my medical story can be instantly obtained. I’m sure there will be similar systems available for you to use in Britain. Keep cool when you get to Oz. The heat at Christmas can be draining. Bon Voyage!      PS   Keep away from anti malarial medications and bitter lemon and tonic water as they contain quinine and will weaken you quickly.

         

         

    • #18820
      Shane Tarr
      Participant

      Hi, I travel a lot, although not too much during COVID because my job requires international travel to many different places in the world. Currently, I am in Vietnam but this year I have been in Thailand, Saudi Arabia, and Fiji. The first tip I suggest is that if you can afford it travel business class although refrain from over-indulging in fine wines (I never refrain but that is because I am not very sensible. The second tip is to try not to be over-tired before traveling and relax on arrival. I find swimming if the weather permits is great or going for a walk in the park (not always possible).  The third tip is try to ensure if on medication you try and calculate taking into account time changes when you should medicate. The fourth tip and most important tip is simply to get up and go and enjoy yourself.  Life is simply too short to worry too much. My neurologist is fine. Mayo Clinic trained and he always likes talking about fine wines and charging the insurance company with what he can get away with.  So, enjoy Morroco.  Watch Casablanca before you go or on the way and enjoy its people, their culture, the scenery, and the excellent food.

       

    • #18821
      Peter Livingston
      Participant

      Travel is fine as long as your condition is stable and you can do some self titration (educated experience and doctor advised) of meds.

      impirtant thought:

      1. Ate you traveling to a remote location where urgent care is not easily obtained?

      2. Know where the closest western medical care hospital is available. With neurologist of course.

      3.  Advise any leaders in your travel group.

      4.  As to mestinon, if that is your Rx, be aware that too much mestinon can mimic symptoms of too little mestinon.

      I was diagnosed in 2015, had a thymectomy that same year, and been traveling internationally without event since recovery from surgery. I am stable on 60 mg of Mestinon twice a day or 30 mg three times a day. I carry a 30 day supply of Mestinon with me always on trips because it’s not always easy to acquire it.

       

      .

       

      Presently I am stabilized on Gammaguard (IV I G)  once per six weeks.   A recent trip to southeast Asia I was delayed on return home.  By an  extra two weeks I missed by those two weeks my infusion and needed to restart my Mestinon at 30 mg 2x  per day until I return.  Upon return I had my IV I G as prescribed and dropped the Mestinon

      • #19323
        Thomas
        Participant

        Hi Peter

        I was on IVIG for 2 years with a monthly infusion.  The insurance company stopped it saying it could not be used as a MG maintenance drug.  Went through a ruff patch and a couple trips to the ER where they did give me the IVIG.  They now have me on Soliris which is a bi weekly infusion.  They have indicated it must be given within + or – 2 days from my normal infusion date or they will need a new script.

    • #18822
      Peter Livingston
      Participant

      Travel is fine as long as your condition is stable and you can do some self titration (educated experience and doctor advised) of meds.

      impirtant thought:

      1. Ate you traveling to a remote location where urgent care is not easily obtained?

      2. Know where the closest western medical care hospital is available. With neurologist of course.

      3.  Advise any leaders in your travel group.

      4.  As to mestinon, if that is your Rx, be aware that too much mestinon can mimic symptoms of too little mestinon.

      I was diagnosed in 2015, had a thymectomy that same year, and been traveling internationally without event since recovery from surgery. I am stable on 60 mg of Mestinon twice a day or 30 mg three times a day. I carry a 30 day supply of Mestinon with me always on trips because it’s not always easy to acquire it.

       

      .

       

      Presently I am stabilized on Gammaguard (IV I G)  once per six weeks.   A recent trip to southeast Asia I was delayed on return home.  By an  extra two weeks I missed by those two weeks my infusion and needed to restart my Mestinon at 30 mg 2x  per day until I return.  Upon return I had my IV I G as prescribed and dropped the Mestinon

    • #18830
      Amy Cessina
      Participant

      I have travelled internationally. But suggest not going anywhere you need to take certain prophylaxis medications like anti malarial or live vaccines. Those really kicked up my symptoms. I also make sure I would be able to get to a western hospital or doctor just for piece of mind.
      Other than  that I just am sensible about food water sanitation etc so I don’t get sick or food poisoning.
      The first few trips I over  thought everything. Now I just relax and enjoy myself.

    • #18867
      Alan Wilgus
      Participant

      Thank you to everyone who responded with travel advice. Some very good points were made that I have applied to my preparations. And of course the range of responses once again reinforces how MG is an individualized disease.

    • #18872
      Diana M Kent
      Participant

      Sincer thanks for all who sent vry useful the help and advice on travelling with MG
      Diana

    • #19199
      Mary S Browder
      Participant

      I have traveled internationaly with MG.  I was originally diagnosed with ocular and then it progressed to generalized.  I was on IVIG for a year during Covid lockdowns and now that we can travel again and I travel for work I am using SQIG.  I’ve carried as much as 3 doses with me plus all the supplies.  When on a cruise I let them know and they have a sharps container in the room for us.  If I’m in a hotel I carry a small sharps container that I purchase online.  I have a bag that looks like a diaper bag but it’s Vera Bradley so it’s adult looking.  It does hold three weeks workth of all the supplies.  I did clear travel plans with my neurologist.  Before I go thru TSA I let them know it’s medical supplies.  You can carry a carry on, a personal item PLUS  a medical bag as long as it fits under the seat or overhead bin.  I have a luggage tag on it identifying it as medical supplies.  TSA has never questioned it or even asked to open the bag and It has 300ml of fluid in six vials in it.  Plus needles and pump and other supplies.  I also carry a travel note from my doctor stating I must have it weekly and I also acrry the prescription that is up to date.  All of this plus my oral meds fit in this one bag.  My hsunabd I I also carry a special medical insurance that IF I ever get hospitalized internationally and am stable they will transport me back to the US to the hospital of my choice.  I make sure I don’t overdo it especially when out of the cuntry.  Take lots of breaks and makes sure I don’t miss any of my meds.  Hope this helps.

    • #19204
      Jonathan A
      Participant

      I am wishing you well on your travels  …  and will be praying for you.  I have been in remission for a year now and take 2000 MGs daily of CELLCEPT, 180 MGs daily of MESTINON, and was tapered and weaned off that nasty STERIOD PREDNISONE … which had HORRID SIDE EFFECTS.  So if you are not on CELLCEPT,  ask your doctor  … I have had no relapses  .. and only had my original 5 hours of 5 days of IVIG.

      I personally would not risk it,  as I was undiagnosed by every Doctor, neurologist, and eye doctor who saw me for 8 months  ..till a third floor  hospital nurse recognized my MG symptoms and talked her supervisors into getting me tested.    PLEASE FIND and ZOOM with MG support groups, in any area that you plan to visit.  Their moderator and your fellow members in that support group  … will know the GOOD doctors  … as well as the UGLY (MG clueless doctors), where you plan to visit.  GET NAMES and DOCTOR CONTACT NUMBERS NOW !!!!  If I could not find a single MG educated doctor for eight months in ARIZONA to diagnose all 9 of my very OBVIOUS MG symptoms  … what will be your chances out of the US?  The BRITISH MG group that I also ZOOM with (1 of my 4 groups) is EXCELLENT.  http://www.myaware.org

      Bring your MEDIC ALERT BRACELET, a flash drive with your records,  and many copies of your medical records  … as well as MG website downloads   …  from http://WWW.MYASTHENIA.ORG and http://WWW.MYAWARE.ORG.  They have downloadable info pages of DANGEROUS DRUGS, ANESTHESIAS, and ANTIBIOTICS, as well as info pages to give to 911 crews, emergency rooms, hospitals, and an anesthesia provider.

      I already had a CODE RED called on me, from an overdose of ANESTHESIA, to an undiagnosed MG patient, when I stopped breathing, and they had to make several attempts to resuscitate me, and had several failures to extubate me.  They did not like my moving, phlegming,  and choking  .. when they attempted to do X rays, MRIs and CAT SCANS.

      BE EDUCATED AND STAY SAFE.  I wish you well.

    • #19319
      Alan Wilgus
      Participant

      I am back from my 23 day trip to Morocco and Tunisia and I want to thank everyone again for the good advice. My symptoms resolved before I left and did not return to ruin things. I remained on 40mg Prednisone daily but due to stomach issues cut my Mestinon down dramatically to  30 mg twice daily. I took the medication during the middle of meals as many advised and that worked well. I also tried to eat smaller portions avoiding fried foods. I drank booze but not to excess. On international trips trip insurance is a smart buy MG or not…but especially now with MG. I carried my MG medical history and a list of drugs to avoid. Best advice was to just do it!

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