Jump to content

Pyridostigmine Woes


MikeO
 Share

Recommended Posts

Well the drug does has worked well for my fatigue, and postural orthostatic hypotension. My gate is better and feel more strength overall. Down side my bowel movements have changed to a fault after going to 60 mg IMO. For now i will go back to 30 mg's and see what happens. I did reach out to my care team. Worst is the very loose stools. I am sure i could get over this but i am told not to take a anti-diarrheal which is ok. Downside is that i have had some bloody stools/wipes for me that is not normal. I can see scraping your butt and producing some redness but this is outside of the norm.

I have discussed if a colonoscopy is warranted with my PCP and he does not think so. Seeing the abnormal bloody wipes started after i started Mestition and that i have bleeding issues recently (random bruises showing up, problems with plavix etc...)

I did lookup up if Mestition could cause some issues. May be rare but yes it can especially with folks that have a bleeding tendency.

Conclusion and link below.

Conclusion: Pyridostigmine interferes with human platelet aggregation and uncommonly in susceptible patient may result in bleeding tendency. Thus, healthcare workers need to be aware of this uncommon side effect of pyridostigmine.

 

https://pubmed.ncbi.nlm.nih.gov/19694313/#:~:text=Pyridostigmine (Mestinon)%2C an orally,a cut in anectodal reports.  

Link to comment
Share on other sites

18 hours ago, DysautonmiaMatt said:

What I do when I get in a bad flare where I have loose stool which is almost liquid is to take 1/4 pill of Imodium AD

I have the gel tabs 2mg. I may try it as it is low does (sure it won't kill me).

15 hours ago, Pistol said:

I would tell your provider right away

I did message the clinic with symptoms and my plan to reduce the dosage to 30mg x2. I was fine before starting Mestition. if they don't like they will reach out for sure.

I do feel a bit beat down (sigh) i don't know why i keep sucking at meds.

Link to comment
Share on other sites

20 hours ago, DysautonmiaMatt said:

If 30mg twice a day still is a problem then maybe goto 30mg once a day or 15mg twice a day

Will definitely play with the dosing. The first morning dose is the one that is getting me afternoon and evening one have been fine. I may try 15mg in the morning and see what happens just not sure if that small amount is even effective (maybe just to get the body use to the drug?).

Link to comment
Share on other sites

I'm impressed that you are still fiddling with this, @MikeO.   I hope you can find the dose that gives you that lift without the side effects.  I have been playing with it myself and have gotten more benefit from Pyridostigmine than any of the many other drugs I have tried for POTS.  But I have found that anything over 45 mg per day gives me air hunger and muscle twitching that are too unpleasant to maintain.  I've been up and down and off and on, but think I have settled on 30 mg in the a.m. and 15 at noon.  Of course the positive effects wear off by mid afternoon, but at that point, I am satisfied if I have managed a halfway decent morning.  It is quite a juggling act, though, isn't it?  Good luck!

 

Link to comment
Share on other sites

@JyotiI remember you reaching out about Mestition i am so happy to hear you gave it a try and is helping making a difference. I do get a lift from the drug as well (i do feel much better) and less symptomatic

I do also feel when the effects ware off (very discernable) about the 3-1/2 to 4 hour mark.

Yes this is a bit of a juggling act but is worth the effort. My care Gal also mentioned that if i have a bad go with a dose it will be short lived and encouraged making dose changes as the med has a very short half life and i do agree as side effects do clear up quickly. 

Best of luck to you as well!

Link to comment
Share on other sites

Hello @MikeO,

Sorry to hear you are having trouble with side effects. I hope you can get it sorted out. Bleeding is not one of those side effects you can brush off.

I finally had my second saline infusion yesterday. It was a fairly pleasant experience compared to the first one I had earlier this year, although a few things still went wrong. The main problem was that it didn't seem to help my symptoms. Maybe a tiny bit, but nothing like what I read people who do respond usually feel.

I think I am now officially "treatment refractory". I am going to try Mestinon again sometime in the near future. I would also like to try albumin and octreotide.

Do your doctors have any more options for you if you can't continue with Mestinon? I do hope so. My current specialist is making noises about "nothing left to try" (that he will prescribe, at any rate). I do have another specialist to try, so not out of options yet.

Link to comment
Share on other sites

5 hours ago, Sarah Tee said:

Hello @MikeO,

Sorry to hear you are having trouble with side effects. I hope you can get it sorted out. Bleeding is not one of those side effects you can brush off.

I finally had my second saline infusion yesterday. It was a fairly pleasant experience compared to the first one I had earlier this year, although a few things still went wrong. The main problem was that it didn't seem to help my symptoms. Maybe a tiny bit, but nothing like what I read people who do respond usually feel.

I think I am now officially "treatment refractory". I am going to try Mestinon again sometime in the near future. I would also like to try albumin and octreotide.

Do your doctors have any more options for you if you can't continue with Mestinon? I do hope so. My current specialist is making noises about "nothing left to try" (that he will prescribe, at any rate). I do have another specialist to try, so not out of options yet.

Good Morning @Sarah Tee,

So sorry the saline infusion did not help. I know these do not work for every one but i would give yourself credit for trying. For most of us trying different treatments is all we can do until we find what works for us.

I am like you as well and i am in the "treatment refractory". My care team did discuss the usual options that are available but they won't try them out of concerns or contradictions with my other health issues (midodrine,droxidopa,fludrocortisone). Interesting that you bring up albumin. I had looked at that as well. If you do try it please post back as to how it works for you.

I did get blindsided by some of the side effects from Mestition but yesterday did well with the dose reduction (15mg in the morning and 30mg afternoon and evening) nothing bad happened and had a good day. Overall Mestition so far has helped (not perfect but better) and can tell when the drug wears off compared to while it is working. I just hope my Dr does not take it away from me (I will have to do some serious begging if she does)

I do encourage you to try Mestition again. So far what i have learned from my experience is it is ok to play with your dose (as long as one stays within the guidelines from your Doc) and if you do have a bad side effect, stopping the drug will clear up the symptom very quickly due to the short half life of the med.

Wish You Luck!

Let us know how you do if you go with a retrial.  

Link to comment
Share on other sites

5 hours ago, MikeO said:

yesterday did well with the dose reduction (15mg in the morning and 30mg afternoon and evening) nothing bad happened and had a good day. Overall Mestition so far has helped (not perfect but better) and can tell when the drug wears off compared to while it is working

That is good news @MikeO.   Yes, you are right--it has a short half life, which is the good news. And the bad.  But I personally feel a lot  better when messing with my biochemistry to do it in short increments.  I really think it might have bumped me up 15% in terms of function and maybe even more when I think about the  difference between accomplishing something using vast amounts of willpower and simply having the ability to do it.  So much easier.  Not a cure by any stretch, but I think I  am finding a few more moments where I feel some enjoyment of life.  

I really hope you can figure it out so that you can stay on it.  

And @Sarah Tee--sorry about the infusion.  So disappointing when we look forward to an intervention that is going to help and it does little, nothing or makes things worse.  I am glad I  returned to Mestinon and I am just going to ignore any suggestion that I increase my dose.  I am long way from the so-called therapeutic dosage, but  I  am  at my own upper limit and it is good to know that.   Good luck if you give it another go.  Let us know...

Link to comment
Share on other sites

@MikeO 

I am so glad to hear that the lower dose seems to be helping you and also not harming you. If you can tell when it is wearing off, that seems like a very positive sign. I do hope you can continue taking it and experiencing the same benefit.

Your quote "nothing bad happened" resonated with me. For most people, this is a normal (subconscious) expectation for their day. For folks with chronic illness, "nothing bad happened" is a day that is a gift, even a shock, that they might look back on wistfully for months if it can't be replicated.

Re albumin infusions, I found a small Canadian study presented as a poster in which the researchers used albumin to treat refractory POTS (I don't have POTS, just undifferentiated orthostatic intolerance, but similar symptoms apart from the tachycardia).

https://www.cambridge.org/core/journals/canadian-journal-of-neurological-sciences/article/p040-efficacy-and-safety-of-periodic-albumin-infusions-in-refractory-postural-orthostatic-tachycardia-syndrome-a-comparative-study/60BFDDF0558BE61F70799DEE202A0AE9

What is interesting in the poster presentation is that it seems that there were some patients who did not benefit from saline infusions but did benefit from saline plus albumin. I wonder what this means. Did these patients lose the volume from plain saline so fast that it couldn't help them, but the albumin made it stick? Or is the albumin doing something else?

There was supposed to be a full clinical trial on albumin from the same people that did the poster, but it was marked as withdrawn in July this year. I wonder why. I tried emailing but no response.

https://clinicaltrials.gov/ct2/show/NCT03365414

@Jyoti, I suspected that the saline infusion wasn't going to work, but, you are right, it was still a disappointment. I seem to fit the profile of low blood volume, so the fact that none of the volume expansion strategies/medications have worked for me so far is puzzling. At this point, I just wish someone could measure my blood volume so I could know whether to move on or keep experimenting in this area. If I win lotto, I will pay for someone to fly to Australia with a blood volume machine and install it in the nearest capital city.

I will give Mestinon another try next week. The bottle I got contains 150 pills, so plenty to try again! Going to get some blood tests done first, just in case diarrhea strikes. I'm so glad it is helping you.

Link to comment
Share on other sites

13 hours ago, Sarah Tee said:

For folks with chronic illness, "nothing bad happened" is a day that is a gift, even a shock, that they might look back on wistfully for months if it can't be replicated.

@Sarah Teeyou are spot on with this. At one point i thought cherry soda would get me out of a flare up but in reality probably was causing me to go hyperglycemic Lol!  

Link to comment
Share on other sites

1 hour ago, Sushi said:

@MikeOLooks interesting, especially as it seems you can check more than a couple of drugs together—which many interaction checkers don’t allow. I looked at it on an iPad and it seems to only be an app—is that correct or can you also use it web-based on a computer?

@Sushii used my laptop. You do have to sign up for an account and used the consumer audience selection when asked "what is your occupation". This is free. BTW how did your ablation surgery go?

Link to comment
Share on other sites

9 minutes ago, MikeO said:

hii used my laptop. You do have to sign up for an account and used the consumer audience selection when asked "what is your occupation". This is free. BTW how did your ablation surgery go?

Glad you can use a laptop—apps can clog your mobile devices. 

Thanks for asking about my ablation. I hadn’t yet posted about it as, going into such a major stressor, we always wonder if it will create a long-term setback or whether we will regain our “normal.” As expected, it was really difficult energy-wise as I had to both travel out of state and undergo a significant cardiac procedure. Although it has only been 11 days, I feel confident that I will regain my “normal“ as each day I am closer to it. I was given many medications during general anesthesia as well as  other drugs before and after – so clearing these medications is part of regaining “normal.“

The EP had to do a fairly extensive ablation (62 minutes of burning) as I had multiple sites of both atrial flutter and Afib. The “mapping” process is fascinating and essential for identifying errant electrical activity. He had warned me that because I had a history of mitral valve disease, it was very likely that he would need to do an aggressive ablation. I didn’t fully understand the connection until I read his report which said that I had moderate atrial scarring and, after researching this, I found in articles that the scarring would have most likely been caused by mitral valve regurgitation. This is something that those who have mitral regurgitation might want to discuss with their cardiologists. I did not have a mitral valve repair until the regurgitation was severe and, apparently, by this time some scarring had taken place. The significance of the scarring is that it sets you up for arrhythmias. I think I will make a separate post on this as many people here are likely to have mitral valve regurgitation.

The care I received was superb and, reading the EP’s report, I am totally impressed with his level of skill and knowledge and very glad that I opted to travel to someone regarded as one of the best in the field. They were very cognizant of my Dysautonomia. The doctor came to my room twice after the procedure to talk with me. The big question that I had was whether this procedure would affect dysautonomia. I can say with confidence that it did not make it worse but I will have to wait until I’m over the fatigue to assess whether it made it better.

 

Link to comment
Share on other sites

@MikeO--not that I noticed.  It did tank my heart rate into bradycardia territory when I went up to 60 mg/day, which is territory I hover near all the time.  I am ok with 50 bpm, but 45 or under makes me feel like crap and doesn't seem advisable.  On 45 mg, I seem able to maintain 50 bpm or thereabouts.  

Has it affected your bp?

Link to comment
Share on other sites

35 minutes ago, Jyoti said:

@MikeO--not that I noticed.  It did tank my heart rate into bradycardia territory when I went up to 60 mg/day, which is territory I hover near all the time.  I am ok with 50 bpm, but 45 or under makes me feel like crap and doesn't seem advisable.  On 45 mg, I seem able to maintain 50 bpm or thereabouts.  

Has it affected your bp?

Well my heart rate has not changed a whole lot (sigh) but as late i have stayed out of the 100's. Yes i have seen a little off a raise in bp's maybe 5 points. I am ok with that. I do still tank after eating a large meal (hmm). I suspect Mestition does not help with this.

bp.thumb.jpg.62f269256975d444fe9146471b9cf75b.jpg

 

 

Link to comment
Share on other sites

Well i am still stuck on this. Outside of a slight ruff go when i upped my dose of Pyridostigmine i have so far responded well. @Jyotinot sure what changes or improvements you have felt so far.

For me i at first noticed less of a dry mouth. I went from brushing my mouth ten times a day to just a couple. Then started to feel a change in my neck (especially along my carotid endarterectomy scar) so much better. I also have not peeing like i have been in the past (swear it was every ten minutes). My swallowing is also much better (meds or food not getting stuck in my throat). I can also talk better and more clearly.

Walking up and down stairs has improved i no longer need to hang on going down and am not coughing like a cat getting rid of a fur ball. Also seen changes while showering (not wavering like i normally would)

While at walgreens i also noticed my vision changed for the better. (no dimming or blurred vision and could see and still see crystal clear.

Kicker is that my hernia along my belt line significantly receded and the tear has tightened up. My mood also has improved (sure it's cause i am feeling better).

My orthostatics have been better as well. I have not (whooshed since starting Mestition) and only have had a few events (food being one and giving my bird smoochy kisses was the other)

I do feel that pyridostigmine is giving me some added strength or effecting some other undiagnosed issue that i may be dealing with.   

  

Link to comment
Share on other sites

@MikeO--that is a very impressive list of improvements!  It sounds like you found something that works for you--as long as you can figure out the worrisome side effect.  Really exciting! 

I am pretty sure this is the one for me as well.  I have tried most of the options without any luck, but at 45mg a day, this is helping me.  I have more energy.  Pre-mestinon, I diligently did my walking, but I always felt like I was swinging concrete legs, yanking them up from the ground against gravity.  Hard work on a flat surface.  Now, often I feel as if it is fun to move.  The energy is there, in my musculature and I don't have to will myself every step.  

I am crashing less.  I get up early and by 2pm --on a great day--I stop being able to think or coordinate my body.  With Mestinon, I am often able to function into the early evening without paying the PEM price the next day.  This is cool.  

My orthostatic symptoms are much reduced.  I actually rarely feel as if I have POTS.  My heart rate still goes into POTS territory when upright, but it goes up 30-35 bpm vs 45 or 50.  That makes a huge difference to my experience.  I was having 10-12 pre-syncope episodes each day and now I have one. if any.  

17 hours ago, MikeO said:

My mood also has improved (sure it's cause i am feeling better).

This is an interesting one for me.  I do think I have the same, but also, I have noticed moments where I felt this extraordinary sense of well-being.  In my body.  Just a: 'everything is alright and life is good' kind of feeling.  Now....that is something I vaguely recollect from a long time ago but have not felt at all since I became ill about ten years ago.  I am fine without it, but ....it is sweet and if Mestinon is helping me have those moments, I'll take them.  

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...