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Toll Prednisone Took on Your Body

What impact did Prednisone have on your body? What symptoms did you experience while on the steroid?

How was your experience weaning off the medication? Have you struggled to do so without adverse reactions? - Jodi, Team Member

  1. Because of the Hashimoto’s, my weight has always fluctuated. Three years before my diagnosis, I had finally gotten my TSH under control and I was in the best shape of my life. Unfortunately, MG landed me in the ICU three times in the first four months after diagnosis, so they put me on prednisone. My weight had effectively doubled after a year. I now have severe sleep apnea and POTS, I can barely walk, and the arthritis in my hips and knees is so painful and extreme that the biologic isn’t even helping anymore. I don’t even recognize myself in the mirror anymore.

    1. my heart goes out to you. I can imagine what you must have endured in those first four months post diagnosis and continue to endure daily. Have you been lucky enough to find anything that provides you with some relief from the pain? Even just temporarily? I know others in our community have mentioned feeling as though they do not recognize themselves. You are not alone. I truly hope you know that our community cares and we are here for you anytime. Please don't hesitate to reach out. Sending many hugs your way. -Jessica, Team Member

  2. My journey with Prednisone has been a little unconventional. I had been struggling with getting my OMG manageable, with only minimal, short lived success along the way. Mostly I was being treated with mestinon. I had to stay on low dosage due to adverse effects (1.25 to 2.5mg/day). IVIG worked well for me and had me in remission briefly following an exacerbation brought on by an infection. After the IVIG treatment I briefly had no symptoms, then mild symptoms returned which were mostly manageable with my low doses of mestinon (double vision gone a few hours everyday)

    Then I got some strange, unexplained knee pain, which was treated with a steroid pack. (Prednisone 20mg 3xday ramped down to 20mg/day over 15 days). This did nothing for my knee, but put my MG into remission and caused a spike in my A1C numbers. (I am type 2 diabetic) This caused my other doctor to change diabetes meds, causing multiple hypoglycemic events. This lead to being put on a continuous glucose monitor (CGM).

    My neurologist saw the great results from the steroids and added it to my MG treatment along with cellcept, (1000mg 2xday) to allow me to hopefully stop taking steroids in about 1yr. Prednisone started at 5mg/day, then reduced to 2.5, due to elevated blood sugar issues. Then finally, reduced to 1 mg/day. I have been on 1mg/day for two months and my MG symptoms are all but gone. My endocrinologist and neurologist are working together to adjust all my meds to balance the side effects each med causes to my other conditions. I use the CGM to monitor my glucose levels, keeping them within desired range has been a challenge with all the meds changes.

    In summary, I have not been on high levels of steroids or on them for long enough to experience any long term effects, but my short term experience is elevated blood sugar levels. The glucose issues are being addressed with new meds that are working well.

  3. I was diagnosed pretty quickly 24 years ago when I went into a crisis. by a very knowledgeable neurologist. I was hospitalized and put on prednisone and mestinon, and underwent plasmapheresis several times a week, and I had a thymectomy. The prednisone was ramped up to 70 mg/day. That was all that was available back then. I opted to stay on prednisone, although it was very slowly tapered down to 25 mg every other day. The tapering took over a year to be able to tolerate it that low. I opted to go with prednisone because I had little grandchildren and one child still in high school. I did not see sitting in the recliner as the quality of life I wanted, and that was all I could do without prednisone. As a nurse, I knew the consequences of long-term steroid use. After discussing it at length with my sweet hubby, we explained to our seven kids that I would go with that treatment to be able to be able to be up and as active as possible for as long as possible, knowing that somewhere down the line there would be consequences to deal with. I am now the grandma of 14, and a widow, dealing with heart and bone and breathing issues. I would make the same decisions all over again. We were able to travel with 11 of our grandkids each summer as they grew old enough, rode horseback with all of them, and I was able to teach several how to swim. I am now conducting Camp Grandma with the youngest three in a new and different way, but getting in good quality grandparenting time with each of them. Sometimes now, travel involves a cane or walker, wheelchair or motorized scooter. But I am out and about exploring the world, and looking at undergoing my 7th back surgery soon to clean up the crumbling mess. I always say: no one in their right mind would take long-term steroids unless it was to save their life. It did mine. And gave it a quality I would not trade for anything.

    1. Hey there! Welcome! I am thrilled you stumbled across our community. 😀 We greatly appreciate you sharing a bit of your MG journey.
      I love your honesty about what led to your decision to stay on prednisone. I am glad you do not have any regrets about it.
      7th back surgery! I send good vibes your way that it goes well. What changes or precautions does your surgery team make, or have in the past, to accommodate your MG and possible risks?

      -Jodi, Team Member

  4. I was diagnosed Jan 2024 had my first urologist app March 27 he put me on 20mg prednisone and pyridostigmine 60mg 3 of them a day..I told him I was concerned about the prednisone, he cut my concerns off .he is a difficult dr. He only spends 5 minutes less with me and says come back in 4 weeks..

    1. I am truly sorry to hear about how your interactions are with your physician. Is it possible to search for another doctor near you? I know many can relate to feeling dismissed by a doctor or dealing with a difficult practitioner. You are not alone. It can be so frustrating and add extra stress to doctor visits. I see you mentioned dealing with incontinence, I shared an article on bladder issues and MG, in case it may be of interest - Hope this is helpful. Kindly, Jessica, Team Member

    2. I had the same problems but with the doctors managed to cut down on a lot of the tablets I was taking. Now off the Prednisilone and it has settled down quite a bit. Still have the urgency but now manageable. Was on so many different tablets it was difficult to know what was doing what with the side effects. Hope this is of some help.

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