erinlia Posted May 24, 2023 Report Share Posted May 24, 2023 Ive been trying Pyridostigmine for a month now. I worked up to 60mg, three times a day. I dont really feel like im noticing a difference in how i feel. Maybe its slight, and I'm not noticing it? The first few weeks it seemed like my blood pressure was lower than it should be. The last few days its been back in my more normal range, i think. If pyridostigmine was helpful for you, in what way did you notice it helping? My heart rate is still going up about 30 beats in the first few mins of standing. It would increase more than that if i stood longer and kept testing it, but i have not taken the time. Is a month a long enough time to try it? Im thinking ill go off of it and see what i notice. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted May 24, 2023 Report Share Posted May 24, 2023 I would think @erinlia, that a month is likely enough time to see a difference. Half life is about 3-4 hours from what I read and also...in my experience. I have posted elsewhere on its benefits for me. I find that it gives --in the hours immediately after taking it--some muscular energy. It allows me to exercise, and even to do so at times with pleasure. Being able to do so likely helps with POTS-specific symptoms. I find that on the whole, my heart rate does still go up into tachycardic realms, but not as far or as high as it would without pyridostigmine. And my blood pressure does dip into hypotensive territory if I take more than 45 mg total (split) each day. So I keep it there. It is not transformative for me, but I do find it helpful. Quote Link to comment Share on other sites More sharing options...
MikeO Posted May 24, 2023 Report Share Posted May 24, 2023 Hi @erinliai get the same increase in muscle energy as Jyoti experiences. i can tell when i don't take the med. it has helped with my GI motility as well. Have not seen a big difference in my HR but then i do not have POTS. my dose is 30 mg x3 Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 24, 2023 Report Share Posted May 24, 2023 I take a lot - they keep trying to titrate me upwards because I’m not doing well. I take 180mg ER 3 times daily, plus 60mg IR 1-3 times a day. It does give me some strength and ability to exercise and be upright a little more, helps my low BP a little, and definitely helps my thermoregulation. If I take it, I can sweat a little when it’s appropriate. Without it, I don’t, and I have trouble keeping warm or cool. So, for me, it’s helpful… but nothing helps enough. I get fasciculations if I take too much, and that’s the limiting factor. Quote Link to comment Share on other sites More sharing options...
erinlia Posted May 25, 2023 Author Report Share Posted May 25, 2023 Ok, thanks so much. Hearing what it does and doesnt do for some of you is really helpful. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 25, 2023 Report Share Posted May 25, 2023 3 hours ago, erinlia said: Ok, thanks so much. Hearing what it does and doesnt do for some of you is really helpful. The nice thing is that you can split the IR tablets, so if they want you to try more, you can go in 15mg intervals. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted May 30, 2023 Report Share Posted May 30, 2023 This thread was helpful because I am giving pyrostigmine another try. The first time I took it, I felt generally unwell and also I think it upset my bowel. Can’t quite remember the details, just that I felt miserable for a week and dropped my iPad and cracked the screen. (It’s still working but I blame my specialist for the crack!) I am starting very slowly this time, half of the dose he wrote on the prescription. Seems to be okay so far. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 30, 2023 Report Share Posted May 30, 2023 4 hours ago, Sarah Tee said: This thread was helpful because I am giving pyrostigmine another try. The first time I took it, I felt generally unwell and also I think it upset my bowel. Can’t quite remember the details, just that I felt miserable for a week and dropped my iPad and cracked the screen. (It’s still working but I blame my specialist for the crack!) I am starting very slowly this time, half of the dose he wrote on the prescription. Seems to be okay so far. People definitely have GI issues with it. I don’t, lucky me! Quote Link to comment Share on other sites More sharing options...
MikeO Posted May 30, 2023 Report Share Posted May 30, 2023 1 hour ago, RecipeForDisaster said: People definitely have GI issues with it. I don’t, lucky me! First couple of doses was a bit of a emergency to get to the bathroom, Haha. @Sarah Teestart with a low dose first and work your way up to your prescribed mg. any GI issues i had with pyridostigmine has cleared up over time. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted May 31, 2023 Report Share Posted May 31, 2023 I suddenly started feeling hot and a bit thirsty last night. I don’t usually feel hot unless the weather is warm or a heater is on. And I almost never feel thirsty. (Not one of my usual symptoms.) It’s winter here, no heater on and the window is open, so not sure what is going on. Feeling hot and extra thirst aren’t listed as side effects so it’s probably a coincidence. On the plus side, no GI problems. Quote Link to comment Share on other sites More sharing options...
MikeO Posted May 31, 2023 Report Share Posted May 31, 2023 3 hours ago, Sarah Tee said: On the plus side, no GI problems. Happy to read that your GI has been ok so far. Was your thirst due to dry mouth or just feeling of thirsty? Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted May 31, 2023 Report Share Posted May 31, 2023 @MikeO, bit of both, I think. I will keeep trying with it though. Got to give it a chance and work up to a dose that might show some good effects. Quote Link to comment Share on other sites More sharing options...
MikeO Posted June 6, 2023 Report Share Posted June 6, 2023 On 5/31/2023 at 5:30 AM, Sarah Tee said: @MikeO, bit of both, I think. I will keeep trying with it though. Got to give it a chance and work up to a dose that might show some good effects. Just checking how has your pyridostigmine trial been going. we worry about you. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted June 7, 2023 Report Share Posted June 7, 2023 @MikeO, that is very kind of you. I am taking it slowly. I don’t think I’m feeling any benefits yet, but I haven’t reached the maximum dose my doctor suggested. Will report back! Quote Link to comment Share on other sites More sharing options...
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