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    • #16153
      Michelle Gonzaba
      Moderator

      While it helped me get my life back to normal, prednisone made me sweaty, gave me acne, and made me gain 25 lbs. How do you cope with the side effects of prednisone? Mentally, how does it feel to take a med that helps with MG but changes so much about your body?

    • #16157
      Jodi Enders
      Keymaster

      Right now, it seems that my doctors blame all my symptoms and pain on prednisone. Therefore, it has been a sort of limitation when it comes to getting medical answers that likely are not all linked to prednisone. However, I am almost entirely off. I started at 60mg nearly a year ago and have dealt with crazy emotions, terrible sweating, weight gain, agitation, acne, face swelling, and loss of appetite.

      • #16158
        Michelle Gonzaba
        Moderator

        I definitely had face swelling too. The highest dose I was ever on was 80mg but it was only because I was having a crisis. My normal dose for a few years was between 40-60mg.

        That’s crazy your doctors blame your symptoms and pain on prednisone. But I’m so happy to hear you’re almost off of it. For me, the side effects went away pretty quickly once I stopped taking it.

      • #17353
        Alice Moreland
        Participant

        I do hate the Prednisone, for all the reasons others have mentioned.  After a major crisis last year I was discharged on 60 mg.  Plus Mestinon and Cellcept (these drugs have side effects too!)  My doctor has gradually decreased the Prednisone to 7.5 mg and that’s much more tolerable.  I have minimal symptoms now, I can breathe, chew, swallow, open my eyes, walk, use my arms, etc. I do tire easily and do what I need to do in short spurts with rest intervals.

    • #17323
      Joseph Betts
      Participant

      What’s worse, taking prednisone or just living with untreated MG? Has anybody decided to just give up prednisone and let their MG take over? I’m stuck with prednisone as a last resort because the first lines of defense (Mestinon,  Azathioprine, etc.) had life threatening side effects and my insurance won’t cover much of anything else because my blood tests don’t test positive for the “approved” antibodies. The many side effects of prednisone are ruining my life: personality changes, bloating, high blood sugar, high blood pressure, bleeding and bruised arms, osteoporosis, glaucoma, etc. etc.  Sometimes I think I’d rather let MG take my body than stay on prednisone. Any thoughts?

      • #17324
        FrancisW
        Participant

        My own experience is not a direct answer to you. But maybe something in it will be helpful.  My wife an RN told me to stay off Prednisone.  She has patients that have terrible problems due to long term use Prednisone.  So as a result I take Mestinon and Azathioprine as drugs.  I also take high doses of Ginger and Turmeric tablets as well as high doses of Vitamin D3.  I am monitoring D3 levels via a blood test done every 2 months.  I pray for you to find a workable solution.

        • #17339
          Joseph Betts
          Participant

          Thanks FrancisW, unfortunately the nausea and vomiting etc. from Mestinon was unbearable. Azathioprine worked great for my MG but it caused me to stop producing new blood cells so my doctor had to discontinue it. That’s why I am left with prednisone as a last resort.

    • #17326
      Cyndi DeHoff
      Participant

      Joseph, my MG is also Seronegative(antibodies don’t show up in blood tests). I am assuming this is the type you have??   I received  a Single Fiber EMG which confirmed the diagnosis of MG. I have had no problem with my health insurance paying for treatments.  I know this test isn’t done just anywhere- usually major teaching hospitals.  They take specialized training on the Neuros part and can be difficult to interpret the results so you really want someone who knows what they are doing administering the test.  It’s just an idea you may want to discuss with your doctor if you haven’t had the test

      • #17340
        Joseph Betts
        Participant

        Thanks Cyndi, I’ve never heard of Single Fiber EMG. I’ll talk with my neurologist about it.

    • #17328
      Lori-June Howard
      Participant

      I experience all of the negative side effects you all mention from prednisone. In addition, due to being on moderate to high doses of prednisone for over 2 years I have been diagnosed with pre- diabetes and osteopenia. We tried tapering me to 10 mg over time and I wound up in crisis in June and hospitalized for 10 days. I HATE  prednisone and am trying to get my doctor to try a steroid replacement…a work in progress. I am thankful for the drugs  I am approved for (IVIG/Rituxan) that keeps me out of crisis, but life has dramatically changed over last 2 years and not for the better. I pray for continued research and breakthroughs in MG  treatment.

      • #17343
        Joseph Betts
        Participant

        Hi Lori-June, I also HATE prednisone, I feel like it is slowly killing me. It’s like having two choices, keep taking the prednisone and it will continue ruining my life or quit the prednisone and let MG take me. After about ten years on prednisone I’m thinking of quitting it and just letting MG have it’s way.

    • #17329
      John Ulfelder
      Participant

      I started in prednisone this spring at 30 mg. My main side effect has been skin thinning, bruised and bleeding arme and legs. I was also taking an 81 mg aspirin daily prescribed by my cardeologist. I stopped it to try and help with the bleeding. It has helped. My neurologist also reduced my prednisone to 25 mg the3n to 20 mg. However, at 20 mg my ptosis (drooping eyelids) startd to get worse. Going back to 25 mg to see if it helps my eyelids & keeping an eye on the bruising and bleeding issue. Its all a delicate balance between symptom relief and uncomfortable side effects. We are also looking at alternatives to prednisone. Otherwise, I don’t seem to have any other rections to the drug.

      • #17344
        Joseph Betts
        Participant

        Hi John, I’m also on the 81 mg aspirin daily. When you quit the aspirin did you have to taper it off or were you able to just quit it all at once?

        • #17346
          John Stormer
          Participant

          I’m still taking the aspirin and haven’t tried to get off it.  I have an artificial aortic valve (TAVR) and the cardiologist insists that I should keep taking it indefinitely.

    • #17332
      Norm
      Participant

      I’ve been on various dosages of prednisone for over two years. Lately, I’ve gained 20 pounds, and my arms bruise very easily — just by rubbing against something.

      If I start tapering off of prednisone, how will I know I have gone too far? Will there be some non-crisis signs (such as ptosis or diplopia), or do I risk a crisis with no warning? What has been your experience with tapering?

      (I’m also taking azathioprine and pyridostigmine.)

    • #17333
      John Stormer
      Participant

      I assume that all the answers above were for prednisone dosages per day.   I have been taking it for 14  years dosing every other day (not every day).  The theory was that this would reduce side effects.  I have been as high as 40mg /48hrs.  Presently down to 10 mg/48hrs.  Skin thinning and bruising somewhat of a problem, but that may be in part a problem with the 81mg aspirin I have to take every day and my age (79).  There may be some osteopenia but may also be due to age.  Was on azathioprine for a few months until I had a liver toxicity from it.  Had to go back on prednisone.    The good news is that the days I take prednisone my arthritis is less painful.

      • #17334
        Lori-June Howard
        Participant

        In my experience when tapering prednisone if you are going to fast your mg symptoms will start to get exacerbated. Any increase in mg symptoms, if there are no other changes should be a warning sign.

        Restricted breathing became the final symptom for me that led to crisis. Good luck with your tapering and stay safe!

    • #17338
      Linda M Fuller
      Participant

      So us there anything that can be done to alter the side effects?

      • #17345
        John Stormer
        Participant

        I think taking prednisone every other day (not daily) minimizes side effects.  But, perhaps if one needs very high doses this might not be possible.  I have always taken it every other day.

         

    • #17341
      Amy Cessina
      Participant

      I took it 4 years ago for a very short time at the beginning of my MG but learned the hard way from an inexperienced doctor who told me to just stop instead of tapering (I didn’t know) ! The pain was horrible and at the time I didn’t know why. It took months for the severe pain in my ribs and body to subside. After that experience,  and a few other ones,  I vowed I would only go to the top hospitals and doctors. So I drive into NYC to go to a top neurology clinic and primary care about an hour and 20 minutes each way. I have even done virtual ER appointments  there which seems strange but he was spot on with my diagnoses and I didn’t have to leave my house. I’m very glad I have found a good place.   Seek second opinions if you feel uncomfortable trust your feelings.

    • #17349
      TheresaG
      Participant

      It certainly is the double edge sword.

      I am on 13.5-15 mg/day.

      i also experience the bleeding and bruising as well as inflammation and broken bleed vessels in my eyes. Any Jen else experience that?

      I gradually went up on the prednisone and when the side effects began I slowed it down rather than continuing to the 20 mg the neuro was looking to attain.

      As a result I still experience the 12-2 p.m. body crash. For those of you in higher doses does it actually stop the MG symptoms?

      I also was taking 81mg aspirin and stopped. It has helped with the bleeding.

      I have tried to reduce and as my daughter has Lupus and was in high doses had her input to go as slowly as 1/2 mg every 2 weeks. Invariably the MG symptoms exacerbate and I succumb to either taking an extra 2.5-5 mg/day. Which gives me a couple g0od days but then gives way to symptoms.

      I think I am somewhat content to keep it at 15 mg or lower and occasionally get a great day or 2 with a higher dose. Keeping my side effects hopefully to a minimum.

      it actually is how I became to be convinced and the doctors as a result of taking prednisone for other reasons and all my mg symptoms went away. Like I could see to drive! No double cars on top of cars. That gets scary.

      Do any of you take prednisolone instead of prednisone and experience any better results?

      I like the idea of every other day steroids, and those of you that take it this way so you think you experience less side effects AND what is the second day like for you?

      Thanks

       

    • #17354
      Linda M Fuller
      Participant

      I have developed what is called Moon face, i retain fluids and my face swells. anyone know anything about it?

      • #17355
        TheresaG
        Participant

        It is one of the potential lovely side effects.

        are you on a high dose?

        my daughter was in 80 mg for lupus, developed moon  face, good news if and when you come down or off it too will go away.

        it took a year for her body to normalize and fir it to begin producing cortisol again. The steroids stop your body naturally producing them which is why it us so painful when you get down to the last 10 mg. Or so.

      • #17356
        Joseph Betts
        Participant

        When I am on 20mg or more/day I also retain fluid in my face, neck and ankles. The excess fluid retention also raises blood pressure so my GP prescribes a “water pill” that helps somewhat.

    • #17367
      Judith Kauffman
      Participant

      I was as high as 20 MG  several times a day.  Am now down to 20 MG once daily.  Feeling better. Unable to fo lower or double vision returns

    • #17368
      George Tvardy
      Participant

      My Generalized MG surfaced in April, 2020, almost exactly one month after I had hip replacement surgery.  I did IViG treatments to stop acute symptoms, and the started on mestinon and cellcept to try to initiate remission.  Mestinon helped with speech and swallowing, but cellcept didn’t seem to help put my MG into remission.  April, 2021 I went to the Cleveland Clinic, and I started prednisone, 10 mg, daily, stayed on the cellcept, and also switched to extended release Mestinon since I am a marriage and family therapist and my speech would begin to slur during therapy sessions with my clients about 3 hours after taking regular Mestinon.

      Finally, after about 1 1/2 years, I finally feel as if I’m getting closer to remission now that prednisone has been added.  Feeling much better.  Weight gain is a legitimate issue, however, as I’ve gained 10-15 pounds since this April.  Hopefully I can get to the point of being tapered off the prednisone and getting the weight back off.  I do feel fortunate and blessed given that I have had a lot of excellent, compassionate and caring healthcare workers who have aided me with this new journey!

    • #17373
      John Ulfelder
      Participant

      I stopped my 81 mg aspirin cold turkey. No need to taper it like prednisone. It helped reduce the rate if bleeding and volume of blood. Right now the open sores on my arms and legs have stopped bleeding and are starting to heal (scabbing over). Hopefully now that I am on a lower dose of prednisone (20 mg) it may be less of a problem. But still not helping with my ptsosis (droopy eyelids) which are causing serious problems with my vision. Other symptoms (difficulty chewing and swallowing) are in remission. My neurologist has suggested that we look at Cellcept as an alternative to prednisone. It, too, affects the immune system and production of white blood cells. Several problems. After I start taking it it takes 6 to 9 months to become effective before we can reduce or eliminate the prednisone. It also can cause skin cancer (so much for vitamin D production!). I have a history of basal cell skin cancers that needed removal befrore they became more serious. I am consulting with my dermatologist to see if she has a strong objection to my taking Cellcept before my neurologist prescribes it. Its always something, isn’t it!

      • #17376
        Joseph Betts
        Participant

        Thanks for the aspirin advice. I’m glad to hear going cold turkey worked ok. I was a bit worried about rebound effects if stopping suddenly.

    • #17375
      Lori-June Howard
      Participant

      Does anyone know how many alternatives there are to prednisone and what they are?

      Thx!

    • #17379
      Troy
      Participant

      Hi folks. I have been on prednisone now for 7 years. I am down to 10 mg daily from a start at 30. I did not stay above 20 for more than a year. That first year I experienced weight gain, rounded face, and unfortunately osteoporosis within the first 3 months.  The weight gain seemed to subside when I got down to 15 mg. Now I can’t gain weight for anything.  The other side effects such as mood swings, chemistry changes, and that feeling that it’s just not right to be on this drug for this long is hard to deal with. I am 50 years old and have a ways to go. The other options I have been given are drugs for people with transplants and would lower my immune system even more. I work at an elementary school and that’s not an option. The positive is that there are companies trying to come up with new options and several are in the final stages of approval. Hopefully soon we will have a medication that is designed to treat OUR disease. Be Safe, Stay Healthy

    • #17402
      Donald Andelsman
      Participant

      After 2 years and seeing 3 neurologists I was just put on 20 mg prednisone, 10 mg 2x daily.  Mestonin kept me in the bathroom too often.  I am feeling about 50% stronger, but always hungry.  This improved feeling is what I was looking for…but I gained 25 lbs during Covidtime.  I hope I can continue to feel better and stay at the ‘starter’ dosage.  I am a senior and on other drugs as well.  Please keep this forum going, it is great hearing from others with MG.  Donald  Melville  NY  USA

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