elle: help tapering Remeron

[elle]

I do not know how to use this site very well..  If someone could please give me some suggestions.  I found out today that I am highly allergic to a medication that I have been trying to taper...   

 

I have a MTHFR called G6PD and there are about 20 medications i should NEVER take, Remeron is one of them.  I am currently on approximately 4.5 mg (and tapering slowly)  However, My doctor said to stop it immediately because my health has been declining fast since I've been on this medicine but no one ever knew this medicine was so bad for my genetics...      

 

I know it can be dangerous to stop any medication cold turkey,  so can I switch to something similar to continue my taper?   apparently I am ok to take Amytriptoline so I am wondering instead of doing a cold turkey off Remeron immediately can I cross over to amytriptoline to continue my taper (I would only replace one for another because Im still tapering, not to stay on it forever as I want off all these horrible medicines)

 

I would be so grateful for any ideas?  Thank you

 

 

 

 

[elle]

ANYONE???   I realize Remeron is not in the same class as Amitriptoline, but I need something to cushion the blow from stopping the Remeron so fast..

[Fresh]

Hi elle , welcome to the site.

I moved your post to the Introductions section - this is your personal thread.

If you click FOLLOW at the top right , you'll receive an email each time someone posts here.

 

This site does not generally recommend switching to another antidepressant as a way of stopping another one abruptly.

There is no guarantee that a new a.d. will protect you from remeron withdrawal.

Please can you add the dates/dose you reinstated valium and started / tapered remeron in one line at the bottom of your signature.

How have you been advised to taper off the remeron?

 

Fresh

[elle]

I have been advised to stop the remeron immediately as it could cause me great harm based on my genetics...  but I also understand that is not the way to go cold turkey so really need some help please??  I cannot taper because the dangers the remeron poses to my health so I need something else to buffer me a bit that I can slow taper off of??  thanks

[Fresh]

You need to trade off if there's more danger staying on it while you taper safely , or coming off quickly , and

choose the least dangerous option.

 

Many of us (including myself) have found that because of our genes we have never been able to metabolize these

drugs properly. This leads to a whole bunch of symptoms similar to withdrawal symptoms , but come from toxicity.

They resolve as you decrease the dose. There is no imminent danger of new symptoms arising at this stage

(assuming you've been on them for a few months?) so all the 67 or so symptoms have are about as bad as it's going

to get.

 

The alternative to slowly tapering is to risk severe protracted withdrawal symptoms , which can be totally

debilitating for many many months. People find they can feel fine for a few weeks after stopping , but then get

hit badly 2 or 3 or 6 months later. And by the time that happens , there's no quick fix.

 

Please read the following links to help understand why tapering is the safer choice.

 

http://survivingantidepressants.org/index.php?/topic/6036-why-taper-paper-demonstrates-importance-of-gradual-change-in-plasma-concentration/

http://survivingantidepressants.org/index.php?/topic/1024-why-taper-by-10-of-my-dosage/

http://survivingantidepressants.org/index.php?/topic/603-what-is-withdrawal-syndrome/

 

Please FOLLOW this topic , and add to your sig. as outlined above.

[SquirrellyGirl]

Hi elle, 

 

I'm curious what risks to your health your doctor stated that the small amount of Remeron you are on posed.  You have done a wonderful job getting to 4.5 mg, so congratulations!  Did your doctor offer amitriptyline as a safe alternative?  A quick search seemed to suggest that amitriptyline would be a bad choice for the MTHFR mutation.

 

I would suggest getting a list of alternatives that would be safe from your doctor and then letting us know here.  Altostrata is very knowledgeable in the matter of substituting when necessary and what the equivalencies would be, as 4.5 mg of Mirt is not going to be equivalent to 4.5 mg of amitriptyline.

 

As Fresh said, switching to another one doesn't mean that you won't suffer from Mirt withdrawal.  Rarely does one drug negate the withdrawal of another of these meds.  I guess you would have to weigh the risks/benefits of switching to another med and possibly still suffering from withdrawal from Mirt while also possibly suffering from start up side effects of the new drug.

 

Let us know what you turn up and we'll try to help from there.

 

SG

[Fresh]

"Please can you add the dates/dose you reinstated valium and started / tapered remeron in one line at the bottom of your signature.

How have you been advised to taper off the remeron?"

 

" I am currently on approximately 4.5 mg (and tapering slowly"

 

What dose were you on , when did you start that , how have you been tapering up till now?

 

Please answer the questions we ask so that we can have a full understanding of your situation.

[elle]

Thanks for your replies.  My doctor has told me to just stop the remeron as he believes it is a low enough dose... ( I know I should taper it even tho it is low)  BUT...  because of the MTHFR g6pd  

 

(G6PD deficiency is an inherited condition in which the body doesn't have enough of the enzyme glucose-6-phosphate dehydrogenase, or G6PD, which helps red blood cells (RBCs) function normally. This deficiency can cause hemolytic anemia, usually after exposure to certain medications, foods, or even infections.)

 

I have been in the ER so much lately violently sick and getting worse, and discovered that  Remeron is VERY dangerous for me (I just found out).  On my 23 and me test, Amitriptoline is listed as "ok" to take (altho I now know none of these medicines are ok..  I don't like them).  but my health has declined so rapidly since starting the Remeron..  I was put on Remeron to get off the Valium (been off valium for a year now)   I know that I am still having symptoms from the valium too.   I also realize that I am just exchanging one medicine for another and this is dangerous, but what else can I do if this medicine is so bad for me???  I wish I could continue to taper it slowly, that would be my first choice but Im so afraid of it causing Hemolytic anemia.  My doctors are clueless how horrible these medicines are to get off of..  I really do not know what else to do?  Please any suggestions I would be so grateful, I have been completely bedridden from trusting my doctors with these medicines.   I am desperate to save myself.   please help and thank you

[Fresh]

I did some reading about hemolytic anemia , and even if you do get it , it's a far less serious condition

than protracted withdrawal syndrome.

See http://www.drugs.com/health-guide/hemolytic-anemia.html

 

"" I am currently on approximately 4.5 mg (and tapering slowly"

What dose were you on , when did you start that , HOW HAVE YOU BEEN TAPERING UP TILL NOW ?

Please answer the questions we ask so that we can have a full understanding of your situation. "

 

How long have you been taking remeron for?

Please add the dates you started all your medications , dosages etc. in your signature so readers can

see your history at a glance.

 

Instructions are here http://survivingantidepressants.org/index.php?/topic/893-please-put-your-withdrawal-history-in-your-signature/

[JanCarol]

Hey elle - the MTHFR "mutation" cannot be much of a mutation, as something like 40% of the population has it.

 

I believe it also means you are a higher risk for withdrawal syndrome, possibly a long term condition.  Most doctors do not believe that levels below the usual prescribed amount have effect - but they do.  Most doctors also do not believe that withdrawal can become protracted and disabling - but it can.

 

Since you are on a low dose, it seems your best bet is to carefully taper off the 4.5 mg.  You may move a little faster than the usual SA taper, since you have been sent to hospital on at least one occasion.

 

Taper to 4 mg, then wait a month.  If that is okay, then try 3.7 mg for 3 weeks.  If that feels okay, you might be able to accelerate your tapers (as close to 10% of current dose as possible) to 2 weeks.  Decreasing your drug load in this way should reduce side effects, as well.  But be prepared to hold at these low doses, if you experience symptoms.  Holding is more effective than adding new drugs to the mix.

 

Please do not add any new drugs - if indeed you have a sensitivity - it is likely to be across the board for ALL psychotropic drugs, regardless of what "23 and me" say.  This really only measures what your liver enzymes are capable of metabolizing, and additionally, the genome does not consider *epigenetic* factors, which may be more important than genes, anyway, ref:  Bruce Lipton's "Biology of Belief")  

 

The dangers and risks of any new drug are far greater than any temporary relief you might get.

[elle]

JanCarol -  thank you for your response.  You obviously have a lot of knowledge.  I am already showing extreme signs of Hemolytic anemia so as you can imagine I am very scared.  I know Im feeling this desperate and it could have me making some bad choices so I REALLY appreciate everyones help.  Im not sleeping at all (still having benzo withdraw symptoms)  Please help guide me on what I CAN take to alleviate if symptoms get severe (since I am so sensitive to these medications I believe it will get bad altho I am trying not to let my brain go there)  I end up in the emergency room with such extreme pain and sadly they only want to medicate me further (which so far, I have managed to refuse)  so PLEASE give me any ideas on what I can use as a backup to help me endure this. I definitely have to get off the Remeron much faster than I would like because of my symptoms of G6PD deficiency getting worse.

 

Fresh - I started on Remeron about 1 1/2 years ago because my doctor thought it would help me get off the benzo which I now understand was the wrong choice...  I was having a horrible paradoxical reaction to benzo.  Altho now,  I really don't know if it is benzo withdraw symptoms or... symptoms of Hemolytic getting worse..   I have continually gotten sicker on the Remeron not realizing it was a bad medicine for me until now.  Until now, I have only dropped the remeron by less than 2% each month because I was hoping to heal from benzo first before really starting the remeron taper...  so unfortunately I do not know how I will react to a normal 10% cut or more...  I have tried to update my signature but confusion is strong right now for me....

 

I am really afraid of what is happening so please please guide me thru this..  What should I expect from dropping the remeron?  When will it typically hit?  Thank you to anyone who is here for me.

[chicken]

Elle I had to get off remeron quickly as i believe it reacted with an antibiotic cipro. I had to cross taper to something. Couldn't Take an ssri so I told many doc I would only do a tricyclic. Any I mentioned amitriptyline since my mom had been on it. Since our genetics were close oases for it. My doc said nortriptyline was better than amitriptyline. Don't know if this is so but I've had much better success tapering it than remeron.

 

Can't say what will work for someone else but this worked for me. If you can stay with the same drug that would be best. I was severely suicidal so I had to do something.

[SquirrellyGirl]

Can't say what will work for someone else but this worked for me. If you can stay with the same drug that would be best. I was severely suicidal so I had to do something.

Chicken, that's useful information.  Can you share a bit more about how the switch went?

 

SG

[elle]

Chicken that is SUCH helpful information...   The reason the remeron is bad for me is G6PD which is also SUPER bad for Cipro (which is probably why is was so bad for you)  I read in your signature that once you were off the remeron all bad symptoms disappeared??  PLEASE tell me more about this, what symptoms, how long did it take??   How do I know the equivalence of Remeron when starting the Amytriptoline, etc??  This could literally save my life

[JanCarol]

Hey Elle - what is your current dose?  4.5?  WHEN did you go to that?

 

Please put dates and doses in your signature so we can understand where to go next.

 

I'm going to stick with my former response that you should taper to 4.1 as soon as possible (hopefully it's been at least 2 weeks since your last taper?), and see if that helps. 

 

It's difficult to "see" from a distance - how sick you are - how much is benzo withdrawal (anxiety) - how much is mirtazapine withdrawal (any number of symptoms) - and how much is this hemolytic anemia.

 

"wanting to taper faster" is a common withdrawal symptom (Neuro-emotion).  While 23-and-me provides information - interpretation of that information is still largely mysterious.  Many people here have done 23-and-me.  If I recall, 23-and-me used to provide information about disease risks, and had to stop because it was scaring people and was in the realm of "diagnosis" and "doctoring" and so now you are supposed to PAY an expert to interpret your 23-and-me results.  

 

So I'm sorry if I sound skeptical - but like I said - I don't want to rush you into withdrawal unless it's absolutely necessary.

 

Slow and steady wins the race, and if you are truly in a life threatening condition, you can accelerate the taper to what your body can stand.  But ultimately - regardless of what I say, or Fresh says, or 23-and-me or your Genetic Interpreter or Doctor say - you must rely on your own body, and your own health instincts and choose a path through this.

 

I've given my recommendation for a gentle, possibly accelerated taper.  Your body may tell you that you can (or even must) go faster than that.  

 

Sorry I don't have any more, new, solid information than that.

[elle]

Thanks JanCarol,  Its not the 23and me test only that told me I have G6pd.. It's also a blood test as well that sadly should have been run years ago.  But I finally know why the Remeron is making me so sick.  I have now cut to 3.75 for 2 nights (I know thats a big cut) but I was going to C/T and everyones messages are helping me realize how dangerous that is.  I will try to believe it wont hit me hard and if it does I truly am unsure what to do...  My symptoms are getting worse and it can be fatal, so Im praying with my whole heart this will work.  I need to be off this medicine asap as it is destroying my red blood cells and now my body is pulling red blood cells from my organs to survive.  don't understand it completely but know this medicine is very dangerous for me.  Please continue to write/guide me because the fear is so strong right now.   Anybody that has any experience with this, I would love to hear what others have done.   thank you all so much

[JanCarol]

Let us know how the 3.75 mg goes.

 

Please wait at least a week (preferably 2) before dropping again.  I don't think that going back up again is going to be an option for you, even if you do have withdrawal symptoms.

 

Besides the hemolytic anemia, are there other symptoms which are affecting you?

[elle]

JanCarol You are wonderful.. thank you for sticking with me...  do you believe I should feel something within the first week?  I know it could hit much later but wouldn't I start to notice something relatively soon?  I don't know the half life...

[Altostrata]

Welcome, elle.

 

What test results have you had that indicate you have hemolytic anemia?

[elle]

A blood test showed my kidney function is bad, oxygen is very bad..  and a few other things that honestly Im trying not to think about right now..  Trying to stay positive and focus on tapering quickly.  My confusion is getting much stronger, wondering if thats from the remeron drop?    Any help would be so appreciated.

[savinggrace]

Hi Elle,

 

Interesting about your MTHFR mutation because I think I have the exact same one, but no one told me the medications I should NEVER take.  I do know that I have a schizoprenic sister who probably has the same mutation (Psych. problems are the main effect of this mutation)  I, too, am on low dose remeron.  I am very deficient in the B vitamins, especially B12 but cannot tolerate even micro-doses of supplementing the methylated versions.  You have given me pause and I am interested in any responses to your question, as I am at a crossroads myself, trying to decide which medication to tackle first...trileptal or remeron.  Many people (and even doctors) don't even know about this mutation but it is a lot more common than you would expect.  One can be heterozygous or homozygous for this, but my doctor doesn't seem concerned because I only have the one mutation; the other one cause cardiac problems and birth defects, so our mutation gets little to no attention.  It should though as it causes a B vitamin deficiency and the B vitamins support our nervous systems.   Thank you for sharing your problem with us.  Sometimes I even forget that I have this problem too because doctors don't seem to care...

[Altostrata]

elle, you need to look closely at your tests to see if hemolytic anemia has been found. How are your liver tests?

[savinggrace]

Elle,

 

I misspoke earlier. I have the A1298C mutation which puts one at higher risk for psychiatric disorders. I do not know much about your mutation. Dr. Ben Lynch has devoted his life to bringing these mutations into the light of the medical world and helping those of us who suffer symptoms from them. It is true that 40% of the population has one of these mutations but some are more serious than others, and always manifest themselves differently from one person to another. I wonder if you looked him up, if you could find out what he says about your condition. He always advocates the healthiest, "cleanest" lifestyle possible to mitigate the damage these mutations cause, especially if you cannot tolerate supplementing w/ methylated B vitamins.

 

I wish you luck w/ your tapering and will be sending you positive, healing thoughts w/ your remeron taper. People have been speaking to me about harm reduction, and I think that is where you are right now. Try to take good care of yourself, lifestyle-wise, to help yourself heal.

[elle]

Alto  Yes my liver is struggling, but I am trying not to focus on all the symptoms because honestly it makes me panic and I would probably c/t and end up in worse shape.  first I just have to focus on getting off this remeron, and then do some repair work without any more pharmaceuticals..    So far I am experiencing little dizziness from my drop that I can handle but its only been 3 days.  

 

 

saving grace  the G6pd is actually a blood test, but they originally found it on my 23andme.  and yes there is a list of medicine that are bad for us with this.  thanks for your support.  we can do this!!!!   btw, what is harm reduction?

[savinggrace]

Hi Elle,

 

My MTHFR mutation was detected by bloodwork done by a functional medicine doctor in northern IN. Though he knows about the mutations, he had no idea what to do with me when I couldn't tolerate the micro-doses of B vitamins I really need, especially B12. That is why I try to adhere to a very clean lifestyle, nutritionally and environmentally. I feel I am giving my body a fighting chance by doing so. It isn't fun, and makes life very self-limiting, but I can still be somewhat functional.

 

I did some reading about your mutation. Is it safe to think that since you know the drugs you should avoid, you also are aware of the foods you should avoid? There is such information out there if you don't have it.

 

Harm reduction, I think, is a term Jan Carol introduced me to yesterday. My interpretation is that sometimes one must proceed w/ a taper a bit more quickly than would be normally optimal for an individual because the side effects of a drug are causing serious complications. In my case, I may never be able to get off all my drugs, but tapering whatever I can as fast as I can safely tolerate it, will hopefully reduce the damage to my brain/body. JanCarol, please feel free to correct me if I am not explaining why the term right.

 

Elle, you can do this, especially w/ the support of the lovely people here.

[elle]

Savinggrace,  thank you for your kindness..  yes i now know there are foods i must avoid as well as my little ones.   Im praying the symptoms do NOT hit me too hard from the remeron.  Altho I had a horrible time getting off benzos so we will see soon.  It sounds like most people notice withdraw around 1 week.  I still have so many symptoms from benzo w/d i think? its hard to tell, because looking back the remeron has made me sick from day 1 but I always thought it was the benzo..  all so confusing,   Hang in there.  We can do this!!!

[savinggrace]

Elle,

I did not read your signature, though I should have, do I did not know that you had successfully tapered a benzo. If you can do that, you can do this...congrats!

The half-life of remeron is shorter than diazepam, (if that's what you used) so when you will feel it will just depends on your individual body/brain.  The half-life is said to be 24-40 hours, but when we taper micro-doses, half of tiny cut may or may not be discernible.  For me, when a cut hits me is unpredictable, and I try not to give it too much power because sometimes I don't feel it much at all. . I do think it will be difficult to discern if what you feel is from remeron tapering, or continued benzo healing. The point is, especially w/ little ones, you have to do this for yourself and them, so you will do what you can at a pace that allows you to be functional enough for them.  I am happy to support you along the way. My life is mostly just trying to get through one day at a time.

Keep us posted. 
Big hug,
Grace

[elle]

JanCarol - can you tell me how long I should wait until I make my next cut?  Im trying not to rush it, but i really need to get off this medicine.  Its been 7 days now.  definitely having vivid dreams (which I can handle)  headaches (which I can handle) nervousness (hope this doesn't get worse)  and some others that I can handle right now, altho its hard to tell because Im still healing from the benzos..

thank you

 

savinggrace - do you think the remeron will be easier than the benzo?  I pray so, because that destroyed me and Im still struggling with symptoms from it..

[elle]

MORE IMPORTANT..  can someone tell me how to cut using pills and a jewelers scale?  I only have 11 pills left  (15mg Pills)  and just found out my doctor will not prescribe me anymore because of the g6pd (he thinks if I just stop cold turkey I will be fine)   My current dose is 3.75 (1/4 a pill)  can someone help me figure out how to do this??  my confusion is thick right now and having a hard time doing the math.   Please help  thank you

[AliG]

Elle.  What are the symptoms that you are having , now ? 

         How did the test results go ?   Please keep track of your symptoms. It will help to assess and help , in this current situation.

[savinggrace]

Hi Elle,

 

Boy, do I ever wish I knew the answer to which will be harder to taper...the remeron or the benzo.  I can't tell from your signature how much benzo you tapered in 6 months, but that is not very long for many people.  So you may be experiencing benzo w/d at the same time you are experiencing new remeron w/d.  I don't think anyone can have the definitive answer to that specifically for you.

 

I am dry-cutting w/ a jeweler's scale as well.  My husband (a former chemistry teacher) cuts my pills for me.  As soon as he is available, I will have him do some calculations for you and get back to you ASAP.  At best, without any waste, which is nearly impossible w/ remeron, you could possibly get 44 3.75 doses from those 11 pills, so you are going to have to be very careful.  Do you have another doctor, like a primary care doctor, who would prescribe more pills if you need them?  I know  many doctors  think we should be able to C/T from this dose (I take 4 mg.) but that is not the case w/ me.  I expect to do an extremely slow taper from remeron like I am doing w/ my other drugs.  I think I am an extreme case, though, and if you were able to taper your benzo in 6 months, you can do this.

 

Do you know the basics of dry cutting w/ a jeweler's scale?  I know I have read them on here, or somewhere.  If not, I will try to find them for you or maybe someone else can provide a link.

 

To  help w/ the calculations, though, we need to know how much one of your 15mg. pills weigh.  I can't assume it's the same as mine as I use name brand remeron.  If you provide us with that calculation, we will try to give you some numbers to work with.  Are you staying on 3.75 for a few days?            

 

You can, and you must, do this.  Try to stay calm and distract yourself as much as possible.  As soon as I hear from you, we will try to get you some numbers.  My husband and I have been "going it alone" for so long; we know how scary and unknown it all is, and would be most happy to help you.

 

Grace           

[Fresh]

These may be helpful elle:

Using an oral syringe and other tapering techniques http://survivingantidepressants.org/index.php?/topic/235-using-an-oral-syringe-and-other-tapering-techniques/

Using a digital scale to measure doses http://survivingantidepressants.org/index.php?/topic/1596-using-a-digital-scale-to-measure-doses/

Combining tablets or capsules with liquid to taper http://survivingantidepressants.org/index.php?/topic/8818-combining-tablets-or-capsules-with-liquid-to-taper/

[AliG]

Fresh has given you some helpful links . You might want to go slower . Have a read and see what you think .

 

Micro-taper instead of 10% or 5% decreases

[elle]

saving grace..  thank you..  I DO have a jewelers scale that I purchased last week.  I have been on 3.75 for 7 days and Im not sure when I need to make another cut but Im sure I need to soon to get off this..  I do NOT have another doctor that will prescribe this so I am quite scared right now.. 

 

I just weighed my 15mg pill it weighs 0.159 (although I weighed another one and it weighed 0.156)  I guess those are close enough..   How do you cut the pills and then weigh them..  Right now my brain is struggling with confusion (from the benzo) so I am unable to read directions and understand very well...    thank you for any help    (btw, it took me 1 and a half years to taper from 5 mg valium... so I had to go very slow)  hopefully remeron will be easier..

[elle]

sorry but those links are confusing me ALOT more...

[Fresh]

elle , weigh 3 or 4 tablets and take an average weight.

Please add recent dates and dosages to your signature.

 

7 April: " Remeron is one of them. I am currently on approximately 4.5 mg (and tapering slowly)"

13 April: " I have been on 3.75 for 7 days "

 

Your recent cut was around 20% , and ideally you will hold for 4 to 6 weeks minimum before decreasing again.

 

You need to make it a priority to find another doctor to prescribe. No point sitting around feeling

scared of what will happen when you run out. Because you will lose some of the tablets in powder as

you file or cut them , there may be less doses left than you think.