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Questions about Mestinon, Midodrine, and Florinef

Discussion in 'General Treatment' started by RebeccaRe, May 11, 2018.

  1. RebeccaRe

    RebeccaRe Moose Enthusiast

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    A few months ago I started taking Mestinon and almost immediately I started feeling worse. I was chilled, constipated, and completely out of breath all the time. I stopped taking it a few weeks ago, and things are so much better--I had never realized what a luxury it is to be able to breathe deeply, or to hold a conversation without stopping halfway through a sentence to catch my breath. Has anybody else had these problems?

    After stopping the Mestinon my doctor recommended Midodrine. I'm uneasy about trying it because it raises blood pressure, and my resting blood pressure is in the normal range. Plus I spend much of the day lying down (usually propped up on pillows, but still), and information I've seen about the drug says that people shouldn't take it before lying down. On top of that, I have a strong family history of stroke (mother and grandmother). I'm very torn because I don't want to say no to trying something that could possibly help me, but I'm feeling like maybe the risks outweigh the benefits here. Have any of you had experiences with Midodrine? Does anybody have wisdom they could share?

    When I told my doctor about my concerns regarding Midodrine, he said that Florinef was also an option. Does anybody have experience with this drug?

    I just don't know what to do.
     
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  2. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

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    Best thing ever happen to me in my live. BUT you have to start low and slow. It took me 2 years to be a full dose (10mg 3 times a day), and do not go overdo because it will trick you into thinking you are cured.
    I had the same struggles since my BP goes high when I crash, low at resting, If you do too much dose you will know. So I started with 2.5 mg (3 times a day) I was afraid to lay. But reclining is ok, I was afraid about the lay down thing, and I realized particularly me Am ok with it. Others end up in ER., so Just reclined to begin on very LOW dose is ok and trust me you need to lay because of the vasodilation so that does get better, so no need to worry.
    I am not doctor this is based on my experience. Others are afraid of this drug (I think they started way too high dose).
    The live of midodrine is very short lived, 4h so if something goes wrong should be ok soon. BUT start as little as you can possibly split the pill.
     
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  3. Shoshana

    Shoshana Northern USA

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    I do not know the answers, and am not familiar first-hand with any of those meds, Rebecca, but I would definitely share your wariness, as your reasons for considering not trying the midodrine sound very reasonable to me.

    I would consider and research all other options, first, if I was in your situation, and not feel that you must follow what one doctor recommends. It truly is your body, your life and your decision, to weigh out.
    SO it surely is a good idea for you to rest in between, after the other poor med experience, while you gather more info, to help you to decide on your next step.

    I think many have taken Florinef. Perhaps either of those meds might be in THIS SITE's search engine, or possibly you could start a thread on Florinef, and perhaps start it in the section for Members only, either emotional support or CFS/ME discussion, for possibly more people to see it?

    Inester definitely shared good information about it, so perhaps this IS the best place for the topic, I do not know.

    Just ideas. I send my caring to you.
     
  4. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

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    I forgot to add, florinef was great, took first dose and went from bed to a 2mile walk ( do not recommend) and gave me a lot of relieve but I stopped because it was bloating me so bad. I have a fat face by nature, and florinef made it soooo much worst. So maybe I will restart w half pill. The issue w OI meds is , OI flictuated for us, so you have to adjust as you go.

    But OI meds have me out of being bed ridden. But takes time to find the right combo, right dose combo and you have to adjust as you go. There are natural alternatives to midodrine ( google) and you can try that and see how it goes.
     
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  5. RebeccaRe

    RebeccaRe Moose Enthusiast

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    I couldn't think of a better place to post the update on my medication, so here it is! I finally started Midodrine in the late spring/early summer (which means I've been on it for about 7 months), 2.5 mg three times a day. It didn't cause any blood pressure spikes, and I was told it was okay to lie down as long as I propped my head up on pillows.

    In terms of day-to-day functioning, not much has changed. I have some days where I feel somewhat better, some days where I feel great and I've been able to sit at my desk in the office for 4-6 hours instead of 1-2. And there are other days where I don't feel any different, and others where I can barely get out of bed or function in any way.

    The strange thing is that, in spite of feeling awful, on most days I am able to exercise using a recumbent bicycle (per Dr. Systrom's advice). I have gone from 5 minutes to up to 20 minutes depending on how I feel. 90% of the time I actually feel good while I'm cycling--I can feel the blood pumping and I actually feel energy shooting in my legs! Such a strange sensation--I wonder if that's what normal people feel like (it's been so long for me I can't remember)?? But I have to be so careful not to overdo it. Once I'm off the bike, I'm back to bed. And if I'm not careful the next day I can't get out of bed, or even reach my arm up to take my morning dose of Midodrine!

    It seems like the medicine and exercise is doing something, though. I had an exercise test yesterday, and the numbers were different from 6 months ago. My peak V02 went from 78% of predicted to 93% of predicted, and my VE/VCO2 slope went from severely abnormal to merely borderline abnormal! I still don't completely understand what these numbers mean, but I do get that my body is using oxygen more efficiently and my heart is doing a better job of filling up and pumping.

    It's strange that my numbers have improved so dramatically, but my daily functioning hasn't changed. I wonder if it will as I continue on this path. I am going to start slowly increasing the dosage of the medication. For two weeks I'll take 5 mg in the morning, and then 2.5 mg at lunchtime and in the evening. If there are no ill effects after a few weeks, I can then take 5 mg for my lunchtime dose, and if that goes well after a few weeks I can take 5mg for all three doses. Fingers crossed...we'll see how this works.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    I am so glad to have discovered this thread and did not see the initial post that you wrote back in May. Like you, I also had a horrible experience when I tried Mestinon (back in 2014). I started on a very low dose (1/8th of a 60 mg pill) and it actually gave me respiratory depression where we debated if I should go to the ER to get the antidote (which I believe was Atropine)? Ultimately, it turned around on it's own and my doctor ended up writing in my chart that I was allergic to it so it was never given to me again.

    I tried it back in 2014 for POTS, but what is especially odd in my case, is that Mestinon is one of the meds that is often prescribed for LEMS and I have the LEMS (calcium channel) autoantibody so in theory it should have helped me and yet it made me drastically worse. I still don't understand why but it reinforced to me how unique and individual each of us are (since Mestinon is a life-changer for many others).

    I am so glad that you updated this thread and I have (successfully) taken Midodrine since 2014 and it is a very helpful medication for me. Like you, I take 2.5 mg 2-3x per day. We played around with my dose for several years and I took as low as 1.25 mg and as high as 5 mg at different times. Are you taking it for POTS or for another reason?

    In my case, I had unbelievably low BP (80/50 every day for several years) and the Midodrine did not raise it very much even though it helped me to breathe better. My (former) Cardio and my main doctor told me that it was 100% okay for me to lie flat after taking Midodrine (without being propped up with pillows) b/c it was clear in my case that it was not raising my BP. But in general, the standard protocol is NOT to do that.

    It was odd that Midodrine was improving my breathing, in the absence of raising my BP on an arm-cuff, but my doctors felt that it was raising my core BP and bringing more blood and oxygen to my lungs through preferential perfusion, even in the absence of raising my BP on an arm-cuff. I have no way to prove this though! Midodrine and Atenolol (while very helpful for me) were more like band-aids for symptom reduction until I found the proper treatments that got to the underlying issue.

    Wow, this is amazing! I want to make sure I understood though, do you mean that you feel awful in general or that you specifically feel awful after you use the recumbent exercise bike? Do you think that you might be overdoing it?

    I have not attempted to use a recumbent bike but I have been able to build up the time that I am able to walk (on a flat surface) from a few steps to a few minutes to now it is unlimited. I can walk for hours (if needed) and yet I can still only climb a maximum of about 5-6 stairs. And no idea about the recumbent bike.

    This is an amazing improvement that is measurable and cannot be due to chance or any other confounding factor! Was this a CPET test? I have never done a CPET test but in my case, I was unable to pass a basic spirometry (pulmonary function test) to save my life prior to my treatments (IVIG and Rituximab) and now I can pass one. I was getting scores showing pulmonary restriction at anywhere from 66% to 74% of predicted. And now I can pass the test. The last time I did a spirometry test was well over a year ago and I am wondering what my scores would be now if I were to try it again?

    What did your doctor say about this? I am not sure what to make of it either and in my case, when my spirometry scores improved, my daily functioning had also improved.

    Please keep us posted and I am very curious to hear how you do on the 5 mg. I ultimately did better with 2.5 mg of Midodrine but this means nothing and we are all so different. Fingers crossed for you.
     
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  7. Mel9

    Mel9 Senior Member

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    I am one of the lucky ones I think, with immediate and dramatic (good) response to Mestinon.

    I would love to know why: any biochemists around to help with reasons?
     
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  8. RebeccaRe

    RebeccaRe Moose Enthusiast

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    @Gingergrrl , thank you so much for sharing your experiences!

    I have never been diagnosed with POTS, but I've also never had any of the diagnostic tests for POTS. I wonder if I do or not. My doctor prescribed Midodrine because he thought it would help with the symptoms of ME/CFS when Mestinon didn't.

    Wow, that is low! My blood pressure is only slightly low (usually around 110/65), which was why I was worried about my blood pressure going up. If mine was as low as yours, I'd have no concern at all! I don't notice a big difference in how easily I breathe with the Midodrine.

    That's the one thing I don't like about taking this medicine--that it is not treating the underlying cause of my fatigue (whatever it may be). And I feel like if it helps me, then doctors will be less concerned about figuring out the underlying cause because if I'm functioning well then there won't appear to be a problem. But I am fortunate that I have found something that causes a bit of an improvement.

    Even on days when I feel awful, once I force myself onto the bike and start pedaling I find that most of the time the exercise doesn't feel so bad. But then usually I feel awful the next day. It's hard to know when I'm overdoing it because, while I'm pedaling, I feel fine. The best advice I got is to try to do 60% of what I feel I'm capable of, not even going close to my limit.

    The recumbent bicycle was recommended because Dr. Systrom thinks it may be better tolerated than other types of exercise. Since you're not completely upright, as you are on a regular exercise bike or when you're walking, then your blood doesn't have to fight against gravity as hard to get back to your heart.

    Yes, this was a CPET test. The amazing thing about that test is it only lasts between 5-10 minutes, but it feels like forever--it's an excellent method of torture. I was expecting an improvement, since I had noticed an increase in my ability to tolerate recumbent cycling, but I wasn't expecting such a dramatic improvement.

    He said that he felt optimistic that I would feel better given my numbers. But he also suggested I slowly increase my medicine to give me a bit of an extra 'boost.' We'll see what happens!

    Thank you for sharing. It's good to know that more medicine isn't necessarily better. So if, for some reason, I feel worse on a higher dose, I won't worry about it and I'll just go back down.
     
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  9. RebeccaRe

    RebeccaRe Moose Enthusiast

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    Hooray for such a positive outcome! I have no clue (and am certainly not a biochemist!), but it does seem to me just from looking around at the people here that there are probably different sub-types of ME/CFS.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    :thumbsup: :heart:

    Do you have tachycardia as one of your main symptoms, especially when you stand, lift your arms above your head, bend down to pick up something from floor, etc? Most doctors associate POTS with dizziness and fainting but I rarely got dizzy and I have never fainted. For me, the symptoms were tachycardia in the 160's and 170's, shortness of breath, very low blood pressure drop, and if I pushed it (by walking a few steps), I got angina type chest pain. All of this is now completely gone but it was intractable for a solid 3-4 years prior to the right treatment. My POTS was autoimmune (and it is possible that we will learn some day that all POTS is autoimmune, but the science is not there yet).

    Yeah, my BP was insanely low and I'm not really even sure why.

    I viewed it as the Atenolol and Midodrine improved my quality of life (which would have been an even worse hell without them) even though they did not get to the underlying cause (which for me was autoimmune). I have many days that I skip the Midodrine now and I am absolutely fine but I have not yet attempted to even taper the Atenolol b/c I am still tapering Cortef and only doing one thing at a time.

    To me this sounds like the description of PEM. I do not get delayed PEM (it was never part of my illness) and my reactions were always instant. If I was going to get severe tachy in the 170's w/chest pain and gasping for air, etc, it was instant. I either crossed the line or I didn't but it was not delayed. This was one of the factors that led my doctor to decide that ME/CFS was never my correct diagnosis (even though we thought it was for several years and I met many of the criteria at that time). But I never had delayed PEM.

    That is interesting and I have not tried a recumbent bike (since I got sick). I tried one many years ago as a healthy person but I can't use that as a basis of anything. Do you have muscle weakness as part of your illness?

    I never did the CPET test although I seriously considered it back in 2014. I spoke at length w/the Workwell Foundation and filled out the paperwork but my POTS and tachycardia were so severe that my (former) cardio did not think that it was safe for me to do the test so I did not proceed.

    :star::star::star:

    I have learned (at least in my case) that a higher dose of a medication is not always better. There were some meds that I took micro-doses of compared to a normal person and others where I took what was considered a normal dose.
     
  11. RebeccaRe

    RebeccaRe Moose Enthusiast

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    I've never been diagnosed with tachycardia, but those three things you mentioned (standing, lifting arms, bending over), are three of the most difficult things for me to do. I'm not sure if they get my heart racing, but they're just physically difficult. But I wouldn't classify the inability to do those things easily as one of my main symptoms. For me, the main symptom is the crushing exhaustion.

    Oh yes, it feels like my muscles just can't squeeze. I'm cycling at the second-lowest level of resistance. So this isn't hard exercise where I'm really pushing and my heart is pumping hard--it just gets my blood moving a little bit faster than it was.

    Given that doing day-to-day tasks can be so difficult, I was shocked to find that most of the time pedaling feels good. But sometimes pedaling doesn't feel good, and if I overdo it I definitely hit a wall. But my wall is very different from yours! For me it will feel like my muscles will no longer squeeze, and I suddenly get so exhausted that I just have to lie down right away. But no racing heart--ooooh, that sounds like it's not fun to experience. I guess that explains why you're on Atenolol! My doctor prescribed that when I was first sick, because he thought maybe my fatigue was some kind of irregular migraine symptom. It made me feel awful, and after my heart rate went down to less than 50 beats per minute he took me off it.

    I often do feel more tired after riding the bike--I won't ride the bike if I have something else I need to do that day--but I can still manage. But with me it's always been the case that whatever exertion I've done catches up to me when I wake up the next morning (and, depending on how badly I've overdone things, the morning after that and the morning after that).
     
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  12. jodiesattva

    jodiesattva

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    @RebeccaRe I'm so excited to read your post. I'm seeing Dr. Systrom in March, so I suspect he will try me on Mestinon. Maybe we could direct message (I'm not sure what to expect with the upcoming appointment)?
     
  13. RebeccaRe

    RebeccaRe Moose Enthusiast

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    Feel free to message me! I'll be happy to share my experiences with you.
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    Even if you haven't been diagnosed with tachycardia, you should be able to feel if you are experiencing it. If your HR increases more than 30 bpm when you stand up, you would be able to catch it on a HR monitor (or basic HR watch). Other POTS triggers for me (but they are not universal) were bending down to pick up something from the floor, raising my arms above my head, etc.

    I also had episodes of tachy in my sleep (when my illness first started in 2013) and I would wake up multiple times per night with my HR in the 160's to 170's and my arms/hands would be numb and I was breathing so fast that I could not speak. It literally felt as if someone was squeezing my heart and it took days to recover from the chest pressure. This could also happen just b/c I stood up from a chair.

    The only thing that lowered the tachycardia was Atenolol so the episodes would be in the 120's versus the 170's. But now finally from IVIG & Rituximab, the POTS is truly gone. I just don't know if it is gone forever.

    My muscle weakness was progressive and just kept getting worse and nothing really changed it until my treatments. It is also gone now but I am left with the residual muscle weakness of having used a wheelchair for almost 4 yrs but I was slowly trying to build up my strength with PT and Pilates. I have no idea what would happen if I tried an exercise bike :nervous:

    It definitely sounds very different than my experience b/c I never felt crushing fatigue BUT if I had a severe POTS episode, the only thing that would improve it was lying down completely flat until it finally passed.

    It was horrible and is the reason why I was on Atenolol (and later Midodrine to try to raise my BP). I truly don't know what would happen now if I were to stop the Atenolol but have no intention of doing so any time soon. It's never lowered my HR to below 50 bpm and can see why it was not the right med for you.

    For me (prior to treatment) my illness was progressive and there were things that I could do and things that I could not do (but it did not vary from day to day). My illness was never where I could rest, then be active, and then have PEM. It was just progressively worsening POTS, muscle weakness, and shortness of breath (and then MCAS & allergic reactions). It was very severe but it was different than what you describe which to me sounds like classic ME/CFS (although of course there is some overlap).

    Best wishes for your appt and I hope it goes well.
     
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