Aa
Should I try Amantidine or not?
I asked my MS nurse about it, having heard a few people here have had good results battling fatigue with it and my insurance still won't cover Provigil.
I talked to my pharmacist, and he was strongly against me taking it, and he has been my pharmacist for many years; a very caring guy. My roommate has knowledge of its effects from people she knows, and says not to take it.
I got an e-mail from my MS nurse today, telling me that she called Amantidine in to my pharmacy, and to take 100 mg. twice daily, and let her know how it works. My roommate said "Don't pick it up, they'll reshelf it."
Do I call my pharmacist and e-mail my MS nurse, saying I don't want to risk new side effects and interactions with everything else I have going on? My pharmacist said it could actually make me more drowsy.
What would you do if I were me?
Kathy
I talked to my pharmacist, and he was strongly against me taking it, and he has been my pharmacist for many years; a very caring guy. My roommate has knowledge of its effects from people she knows, and says not to take it.
I got an e-mail from my MS nurse today, telling me that she called Amantidine in to my pharmacy, and to take 100 mg. twice daily, and let her know how it works. My roommate said "Don't pick it up, they'll reshelf it."
Do I call my pharmacist and e-mail my MS nurse, saying I don't want to risk new side effects and interactions with everything else I have going on? My pharmacist said it could actually make me more drowsy.
What would you do if I were me?
Kathy
Thank you all for sharing your experiences with me. I've decided to give it a try; I have a week coming up where I can try it and see how it goes. I would love to be one of the ones it works for! So it was Rena that had the great success with it, ah ha.
And Wobbly, too, once you got past the first adjustment. I'll make sure I'm well-stocked with supplies at home while I try adjusting to a new med if there are any negative side-effects for me.
Provigil was such a wonder to me when I first tried it; I felt more alert and clear than I had in a long time. I've never taken more than 200 mg, and most days can get by on 100 mg.
It is very frustrating to me that most insurances won't cover it for MS fatigue, though my MS neuro (who has seen a lot of patients) says Provigil has been the most helpful in reducing fatigue in MS patients.
Debs, as for my heart rate elevation, I'm going to try yoga and meditation to see if it helps reduce it, since my neuro said it was from anxiety and my regular doc said it could be from stress. I've been taking Provigil for over a year, so it seems odd that it could be the cause of my elevated heartrate now.
I have done too much a few times, and paid for it, especially when there were things I just had to get done. But I could get them done, and then let my body rest with no Provigil. I found that if I was totally wiped out, it didn't work anyway, so I learned to take a day of rest. Since I paid what came to $15 per 200 mg. pill for my last prescription, I didn't see any need to waste my money!
So, I'll see if it's ready, go pick it up, and give the Amantadine a try.
Kathy
And Wobbly, too, once you got past the first adjustment. I'll make sure I'm well-stocked with supplies at home while I try adjusting to a new med if there are any negative side-effects for me.
Provigil was such a wonder to me when I first tried it; I felt more alert and clear than I had in a long time. I've never taken more than 200 mg, and most days can get by on 100 mg.
It is very frustrating to me that most insurances won't cover it for MS fatigue, though my MS neuro (who has seen a lot of patients) says Provigil has been the most helpful in reducing fatigue in MS patients.
Debs, as for my heart rate elevation, I'm going to try yoga and meditation to see if it helps reduce it, since my neuro said it was from anxiety and my regular doc said it could be from stress. I've been taking Provigil for over a year, so it seems odd that it could be the cause of my elevated heartrate now.
I have done too much a few times, and paid for it, especially when there were things I just had to get done. But I could get them done, and then let my body rest with no Provigil. I found that if I was totally wiped out, it didn't work anyway, so I learned to take a day of rest. Since I paid what came to $15 per 200 mg. pill for my last prescription, I didn't see any need to waste my money!
So, I'll see if it's ready, go pick it up, and give the Amantadine a try.
Kathy
Hi Kathy,
Fatigue was ruining my life – I was sleeping for maybe 15 hours a day.
My Neuro tried me on Amantadine, and my side effect was it made me even more tired.
Next step – Provigil. OK that worked really well. Gave me terrible ectopic heartbeats, and I felt totally wired even on half the dose.
In my opinion only ok? If your body needs rest, then you have to rest.
What I found when I was taking Provigil is that YES it worked, BUT and this is a big BUT, I would be able to stay awake all day, doing everything that I had to do, running around, cleaning the house, working, and then the following day WHAM !! I was totally wacked out, from doing too much the previous day.
So I had to take more to get me through the following day, and on it went – can you see the scenario of what I am trying to say?
So as already been pointed out by Q and Ess, it’s a fairly non-descript type of drug, but there are many people here on the Forum who would say it has done wonders for them.
Remember, we are all different in the way our bodies react to meds. so give it a try and see what happens - you can always stop taking it.
Hugs,
Debs xxx
Fatigue was ruining my life – I was sleeping for maybe 15 hours a day.
My Neuro tried me on Amantadine, and my side effect was it made me even more tired.
Next step – Provigil. OK that worked really well. Gave me terrible ectopic heartbeats, and I felt totally wired even on half the dose.
In my opinion only ok? If your body needs rest, then you have to rest.
What I found when I was taking Provigil is that YES it worked, BUT and this is a big BUT, I would be able to stay awake all day, doing everything that I had to do, running around, cleaning the house, working, and then the following day WHAM !! I was totally wacked out, from doing too much the previous day.
So I had to take more to get me through the following day, and on it went – can you see the scenario of what I am trying to say?
So as already been pointed out by Q and Ess, it’s a fairly non-descript type of drug, but there are many people here on the Forum who would say it has done wonders for them.
Remember, we are all different in the way our bodies react to meds. so give it a try and see what happens - you can always stop taking it.
Hugs,
Debs xxx
I'm very surprised at all the uproar over Amantadine. It's been around a long time and has a pretty benign profile. Every med will have its downside for at least a few people, and of course that has to be reported, but on balance this one is really mild. As Quix says, it's an antiviral that was used for children (and adults).
My neuro prescribed me Amantadine for fatigue, at 100 mg to be taken first thing in the morning. Tried that a couple of times, a big zero. Read up on it and experimented a few times with a 200 mg dose. Still nothing, nada, zip. Stopped trying.
Rena, on the other hand, has had great results. I hope she'll catch us up on how she's doing with it.
I may have to ask my neuro for Provigil or Nuvigil, since fatigue can be overwhelming. I slept a good 14 hours yesterday. But anyway, I see no harm in trying Amantadine. It can always be stopped, and as a bonus, it's cheap.
ess
My neuro prescribed me Amantadine for fatigue, at 100 mg to be taken first thing in the morning. Tried that a couple of times, a big zero. Read up on it and experimented a few times with a 200 mg dose. Still nothing, nada, zip. Stopped trying.
Rena, on the other hand, has had great results. I hope she'll catch us up on how she's doing with it.
I may have to ask my neuro for Provigil or Nuvigil, since fatigue can be overwhelming. I slept a good 14 hours yesterday. But anyway, I see no harm in trying Amantadine. It can always be stopped, and as a bonus, it's cheap.
ess
Hi there, from my experience with taking Amantadine, the first time I took it, I felt out of it..for the first few days... I suggest not to drive or go far from home. I felt like I was stoned kind of... after the few days.. taking only one pill in the morning.. I started to feel more energy and felt like I could get up earlier and move around more.
I take one pill a day in the AM now.. I stopped the pill when I felt better, but found out last week at my MS appt that I should be taking it everyday in the AM.. I do and feel fine, no side effects now..
I read that it wears off after awhile, so the Dr said to take the second one before 11:00 am.. if I feel I need the second one.. which I will do if fatigue bothers me now.
I say try it for a week, and see how you feel... hang in there friend
wobbly
dx
I take one pill a day in the AM now.. I stopped the pill when I felt better, but found out last week at my MS appt that I should be taking it everyday in the AM.. I do and feel fine, no side effects now..
I read that it wears off after awhile, so the Dr said to take the second one before 11:00 am.. if I feel I need the second one.. which I will do if fatigue bothers me now.
I say try it for a week, and see how you feel... hang in there friend
wobbly
dx
Hi, I didn't see your post until now!
I have such a long list of medications that I have to trust professionals to figure out the interactions.
The side effects are another story; some happen to some people, and others happen to others.
I had every side effect to a blood pressure med I was taking for tremors, and i hadn't even read what they were. I just thought I was getting a lot sicker; this was before I got diagnosed.
And Vesicare; it's working wonders for you (thank heavens!) while when I took it, it made my mouth and throat so dry that my tongue stuck to the roof of my mouth, I had sores on my tongue, and my throat hurt and I sounded really raspy. My eyes were more dry than usual, too.
I still have to know where I can find a bathroom whereever I go, but that works for me.
Kathy
I have such a long list of medications that I have to trust professionals to figure out the interactions.
The side effects are another story; some happen to some people, and others happen to others.
I had every side effect to a blood pressure med I was taking for tremors, and i hadn't even read what they were. I just thought I was getting a lot sicker; this was before I got diagnosed.
And Vesicare; it's working wonders for you (thank heavens!) while when I took it, it made my mouth and throat so dry that my tongue stuck to the roof of my mouth, I had sores on my tongue, and my throat hurt and I sounded really raspy. My eyes were more dry than usual, too.
I still have to know where I can find a bathroom whereever I go, but that works for me.
Kathy
My pharmacist expressed his concern about Amantidine when he asked me how the approval process was going for the Provigil, which is not good, and I told him that I had asked Kay about it. He frowned, and told me that in his experience, most people that he filled it for had more drowsiness than relief from fatigue. He was concerned that it might add to my problems.
He did say that he had filled it mostly for people that had it prescribed for tremors. He said that if I was to try it, I should try a very small dose. I don't think he has much experience with MS patients, and he was just answering my questions, not telling me NOT to take it.
The information I'd read about the med before didn't include all the info. about how helpful it is for MS fatigue, had only heard the reports of good reports from people on the forum.
Silly me. After reading Quix's response to my post, I googled Amantadine and fatigue, and got the real scoop.
Another report I heard was that it worked very well in treating a young teen caught in circular thinking; kind of as an anti-psychotic medication. It does seem to have a lot of uses.
I'm just antsy after starting Avonex, Tegretol, and having strange rashes and elevated heartrate with exertion (sounds like its just sinus tach, from the first reports from my event monitor).
In the multiple sclerosis encyclopedia it has good things to say about Amantadine helping MS fatigue. The part that bugs me is :
"Amantadine is generally well tolerated by people with MS but it can cause insomnia, nausea and dizziness. The insomnia can be best dealt with by taking the drug in the morning and midday. Other common side-effects include loss of concentration, dizziness, headaches, irritability; loss of appetite, nervousness, blotchy rashes especially in the sunlight, constipation, dryness of the mouth and vomiting"
I remember telling Phil (pharmacist) that I really don't need any more dizziness or loss of concentration. I wouldn't mind a little loss of appetite, though, ha ha!
I guess it wouldn't hurt to give it a try. If the Provigil is what's been setting off the tachycardia, maybe the Amantadine would not, and I wouldn't have the worst of the side effects.
Still up in the air, but leaning more towards giving it a try. I've gone many days without Provigil as I ration it out, and I really do not get much accomplished on those days, even when I get 10 hours of sleep and should be well rested.
Kay has access to my medication list, she surely discussed this with my brilliant neuro, and I should most likely get over my skittishness and give it a try.
Ktahy
He did say that he had filled it mostly for people that had it prescribed for tremors. He said that if I was to try it, I should try a very small dose. I don't think he has much experience with MS patients, and he was just answering my questions, not telling me NOT to take it.
The information I'd read about the med before didn't include all the info. about how helpful it is for MS fatigue, had only heard the reports of good reports from people on the forum.
Silly me. After reading Quix's response to my post, I googled Amantadine and fatigue, and got the real scoop.
Another report I heard was that it worked very well in treating a young teen caught in circular thinking; kind of as an anti-psychotic medication. It does seem to have a lot of uses.
I'm just antsy after starting Avonex, Tegretol, and having strange rashes and elevated heartrate with exertion (sounds like its just sinus tach, from the first reports from my event monitor).
In the multiple sclerosis encyclopedia it has good things to say about Amantadine helping MS fatigue. The part that bugs me is :
"Amantadine is generally well tolerated by people with MS but it can cause insomnia, nausea and dizziness. The insomnia can be best dealt with by taking the drug in the morning and midday. Other common side-effects include loss of concentration, dizziness, headaches, irritability; loss of appetite, nervousness, blotchy rashes especially in the sunlight, constipation, dryness of the mouth and vomiting"
I remember telling Phil (pharmacist) that I really don't need any more dizziness or loss of concentration. I wouldn't mind a little loss of appetite, though, ha ha!
I guess it wouldn't hurt to give it a try. If the Provigil is what's been setting off the tachycardia, maybe the Amantadine would not, and I wouldn't have the worst of the side effects.
Still up in the air, but leaning more towards giving it a try. I've gone many days without Provigil as I ration it out, and I really do not get much accomplished on those days, even when I get 10 hours of sleep and should be well rested.
Kay has access to my medication list, she surely discussed this with my brilliant neuro, and I should most likely get over my skittishness and give it a try.
Ktahy
COMMUNITY LEADER
Ok, i thought it odd that a nurse could perscribe anything, so what your saying is that an MS dr who knows her well has been supervising and gave the go ahead. Well to me thats a different kettle of fish, a qualified MS specialist has ok'd this and then you've got none MS people poo pooing it.
In that case i'd be following the advise of your MS dr, which is what i ment by 'getting more expertise before adding anything else to the mix' very different to what happens over here, though it probably should I like the idea.
I did say i was uncomfortable about meds at the moment but still i thought the pharmacist was the only one who knew anything about anything in this senario, turns out the MS nurse being the voice, eyes and ears of the MS dr would be more qualified to know what they are talking about. You live and learn!! :-)
Cheers..........JJ
In that case i'd be following the advise of your MS dr, which is what i ment by 'getting more expertise before adding anything else to the mix' very different to what happens over here, though it probably should I like the idea.
I did say i was uncomfortable about meds at the moment but still i thought the pharmacist was the only one who knew anything about anything in this senario, turns out the MS nurse being the voice, eyes and ears of the MS dr would be more qualified to know what they are talking about. You live and learn!! :-)
Cheers..........JJ
I agree with Quix, where is the harm in trying, it's not going to kill you. I don't like taking meds either but there comes a time that you decide that the benefits that you might get out of taking a medication will out weigh whatever problem you are having and I imagine that chronic fatigue could be disabling and make you depressed.
I had a similar issue where my pharmacist disagreed with my doctors prescription but although they are very well trained in meds they don't get the full picture the treating doctor has. Everyone is different on medicine.
I know I was scared about taking the Vesicare that i am now taking but it has given me back quality of life, it has made a huge difference to me socially and mentally, I can now go on a long drive without a zillion loo stops, I am no longer in pain and enduring painful spasms, so I am not whining as much..lol, the benefits outweigh any side affects.
Goodluck with it all, let us know how you get on, I am sure that the Doctor wouldn't suggested it if he didn't think it would help.
Udkas
I had a similar issue where my pharmacist disagreed with my doctors prescription but although they are very well trained in meds they don't get the full picture the treating doctor has. Everyone is different on medicine.
I know I was scared about taking the Vesicare that i am now taking but it has given me back quality of life, it has made a huge difference to me socially and mentally, I can now go on a long drive without a zillion loo stops, I am no longer in pain and enduring painful spasms, so I am not whining as much..lol, the benefits outweigh any side affects.
Goodluck with it all, let us know how you get on, I am sure that the Doctor wouldn't suggested it if he didn't think it would help.
Udkas
Supermum - In principle I agree with you. the difference here is that the pharmacist has a duty to discuss recommendations regarding changes in the prescription with the doctor involved. It is a professional and an ethical duty.
We know that Kathy's neuro is a brilliant and highly respected doctor. So, it isn't that she is seeing a quack.
In the US we have paramedical professionals who can practice medicine within a limited scope under the supervision of a doctor. These are Physician Assistants, Certified Nurse Practicitioners, and Nurse Specialists. I have worked with all of them at one time or another. The physician actually lists the specific and only meds the NP, PA, or RN may prescribe, reviews the notes, and is always available for consultation.
Quix
We know that Kathy's neuro is a brilliant and highly respected doctor. So, it isn't that she is seeing a quack.
In the US we have paramedical professionals who can practice medicine within a limited scope under the supervision of a doctor. These are Physician Assistants, Certified Nurse Practicitioners, and Nurse Specialists. I have worked with all of them at one time or another. The physician actually lists the specific and only meds the NP, PA, or RN may prescribe, reviews the notes, and is always available for consultation.
Quix
You are desperate for something for the fatigue. You know that Amantidine is widely used for MS fatigue. Though it can have some side effects, all people do not get them. Is there harm in trying it? If you get side effects that make life worse, would you not be able to stop the Amantidine? This stuff is not going to kill you. But, you have poor quality of life with the severe fatigue.
What was your pharmacist's rationale for recommending that you not take something that is approved and used for severe fatigue in MS? He isn't trying to cope with the severe fatigue. If he feels that way, it is actually unprofessional to recommend to the patient they not take something. If he has knowledge that it would not be indicated for you or would be detrimental for you, he should discuss this with the prescribing provider. this behavior annoys me no matter how caring he has always been. That is the way two professionals participate in the care of patients. He could legitimately be reported to the Licensing Board for this behavior.
The people telling you not to try this should ennumerate their concerns and you should discuss them with Kay. Specifically the pharmacist should discuss this with Kay or Dr. C.
I don't see what a trial could hurt. I would recommend that you take half the dose for a couple days and see how you do, then take the full dose.
We used amantidine in children for influenza. It was our first anti-flu med in the 80's. The worst a couple of them had was hallucinations, which I always warned the parents about. They didn't last long, and the med was only used for 7 days. The parents felt that shortening the flu by 3 or 4 days was worth the aggravation.
I'm puzzled at the strong recs not to even "try" it. It seems anti-rational.
Quix
What was your pharmacist's rationale for recommending that you not take something that is approved and used for severe fatigue in MS? He isn't trying to cope with the severe fatigue. If he feels that way, it is actually unprofessional to recommend to the patient they not take something. If he has knowledge that it would not be indicated for you or would be detrimental for you, he should discuss this with the prescribing provider. this behavior annoys me no matter how caring he has always been. That is the way two professionals participate in the care of patients. He could legitimately be reported to the Licensing Board for this behavior.
The people telling you not to try this should ennumerate their concerns and you should discuss them with Kay. Specifically the pharmacist should discuss this with Kay or Dr. C.
I don't see what a trial could hurt. I would recommend that you take half the dose for a couple days and see how you do, then take the full dose.
We used amantidine in children for influenza. It was our first anti-flu med in the 80's. The worst a couple of them had was hallucinations, which I always warned the parents about. They didn't last long, and the med was only used for 7 days. The parents felt that shortening the flu by 3 or 4 days was worth the aggravation.
I'm puzzled at the strong recs not to even "try" it. It seems anti-rational.
Quix
COMMUNITY LEADER
I'm a little uncomfortable about drugs at the moment, but still i'm unsure how an MS nurse can be qualified to perscribe, can they do that in the states? Putting my uncomfortableness aside, I would be trusting the pharmacist, drugs and how they interact with each other is his field of expertise.
I follow a principle of 'if in doubt leave it out' and i'd be getting more expertise before adding more to the mix, but thats me!
Cheers......JJ
I follow a principle of 'if in doubt leave it out' and i'd be getting more expertise before adding more to the mix, but thats me!
Cheers......JJ
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