SunnyTrail: my experience with risperidone / Risperdal

[SunnyTrail]

Last year in April/May I was diagnozed with a psychosis / schizophrenic disorder. My symptoms were accustic hallucinations (hearing voices) as well as severe paranoia and suspicion. I thought people in the workplace and also in public were spying on me and engaging in conspirations against me. I started to shut down my shades in the apartment and changed my wlan password every day. I came to a state of absolute mental exhaustion when I wandered through the city without having any orientation at all and being a danger to myself. Luckily I agreed to see a doctor who put me into a psychiatric clinic (after my consent) where they treated me with risperidone (the first four weeks with pillls and then with the risperidone consta injection). In the beginning they accidently overdosed me (they also admitted to that) so that I could not function anymore at  all, was constantly salivating huge amounts and got problems with my jaw which they tried to short-term fix with Akinon. After two to three days the negative side effects were not so severe anymore, but I got significantly numbed down. Five to eight days after my submission my symptoms (hallucinations/paranoia) were gone and I was relieved from the clinic around four weeks after submission and continued to go there only during daytimes for another two months. In December last year I shifted back to oral medicamentation (4mg risperidone per day, 2mg in the morning and 2mg in the evening) because my new psychiatrist said that I dont have any compliance issues and I am more flexible this way. The shift was not so easy, I was mostly tired for about a month or so. After that and under supervision of my new psychiatrist I was gradually tapering down the risperidone over the last months (February through now). The first step was shifting down from 4mg to 3mg, then from 3 to 2 mg, then from 2 to 1,5mg and finally from 1,5 to 1 mg with always waiting four weeks until the next step of tapering down. Except fro the second tapering down phase (3mg to 2mg) where I got very tired for about two to three weeks I was withdrawal symptome free. However, risperidone numbs me really down, I am not so much emotionally engaged anymore, being around people exhausts me. Before I was working out a lot, but I just feel it is not worth the effort. I also experience a TD in form of my leg moving up and down when I am sitting down and having my legs crosssed. Except for the TD I dont know whether the symptoms all come from the medicine or are also partly induced by the negative symptoms of my psychosis. The buildup of the psychosis was really heavy, it came to the point where I did not trust anyone anymore, including my family and significant other and was completely exchausted (psychologically and physically). However, ever since I am down to 1mg I am generally feeling more awake now. I can take care of my life and of myself and also work fulltime. I still have concentration issues and cognitively I am not where I was before, but I can function quite well (I just lack motivation and excitement for a lot of things). I read from quite some people that the lower the dosis, the more functions I would be getting back. But I also experienced the windows and waves pheonomena. There are hours when I am doing extremely well and others when I am just blue and lethargic.

 

Now, I have been on 1mg for six weeks now and my psychiatrist said I can taper down by 0,25mg. However, I also got pregnant about six weeks ago, which changed my life a lot, also to the degree that I am more careful about anything. I spoke with my psychiatrist about it because of the impact of neuroleptica on the fetus. Whereas Quetiapin is generally given to women who are pregnant as risperidone could have a slightly higher negative impact during pregnancy, my doctor advised me not to change the medicine becasue the higher risk is not to a high degree and switching neuroleptica might result in more complications (withdrawal symptomes from risperidone, adverse effects of Quetiapin, etc.). But when he told me to reduce my risperidone by 0,25mg, which did not sound like a lot, I was trying to get more information about it from forums such as like this, where people constantly pointed out the danger of cutting down on the medicine too quickly. That is also why I chose to sign up here and engage in discussions to learn from one another. In general with risperidone, but especially with my situation I have a couple of questions, and maybe someone with similar experiences can share with me.

 

1) Regarding pregnancy-induced morning sickness, I throw up occasinally. Now I also wait until 10 o clock to take my medicine, until the biggest wave of neausa is gone, but there were one or two times where I had to puke two hours after I took the risperidone pill. In this respect, does anybody know how long it takes until the substance has fully absorbed by the body?

 

2) Would you advise taking the medicine once per day instead? The prescription says you can do it either way and so did my psychiatrist. He pointed out that so far it has worked, so why not stick with it. I read that when it comes to lower dosis it might be easier to split the dose up to two dosis a day, but 1mg is not so low yet. It would make things a lot easier, but I dont know about how to transition (how long should the transition period be and whether or not to start shifting the morning dosis (completely or in parts) from hour to hour over several days). It would be great if there is someone out there who has experienced the difference between one and two dosis a day.

 

3) With focus on tapering down I am thinking about shifting to the liquid version of risperidone. Do you know by experience whether the 1mg/1mL solution dillutes, so that I can drop 1mg/1ML into lets say 10mL of water and take out 9,5mL to get to my dosis of 0,95mg. Does anyone know if this tapering technique works especially for the risperidone liquid because it seems that some compounding pharmarcists do not share the same opinion.

 

4) While my pychiatrist said it is good to reduce my dose, I also read that withdrawals (e.g. drugs) have a negative impact on the fetus as for shock (rule of thumb: if the mother feels fine, the baby feels fine). The past days was the first time I read that after tapering down it is not necessarily the original symptoms that come back, but rather withdrawal symptoms. So I try to be really careful here, because I dont see a big difference between the impact of withdrawal systoms of different substances (be it drugs, antidepressents, neuroleptice, ect) on pregnancies. Therefore, the question is whether or not it would make sense to keep everything status quo over the time of the pregancy and then start tapering down again in the next year or whether it would be more beneficial to start already tapering down.

 

Regarding all the aspects I know that I involve my psychiatrist and dont do any "experiments" on my own, particularly with the special situation of my pregnancy, however it would be extremely helpful to learn from your experiences of other sources (links, etc.) you might know because even though I have the feeling that I get along with my psychiatrist really well and he wants to minimize my medication as much as possible, it seems that also his knowledge has limits.

 

My gynecologist knows about everything, I have a biweekly appointment for check-up on possible issues and I looked up a clinic nearby which specializes on neonatology as for this speical situation.

 

Last but not least, I apologize for the mediocre English in my posts, but I am not a native, so I hope it is ok.

 

I am happy to keep you posted and cannot stress enough how much hope and strength this forum has given me already throughout the last couple of days.

 

Best wishes,

Sunny

 

[manymoretodays]

Hi SunnyTrail,

And welcome to survivingantidepressants.

And so good to hear about your improvements over time.  Oh, and congratulations on your pregnancy.

Thank you so much for your willingness to do an Introduction(I did see your posts, on carefulprayerful's Introduction as well, starting here).

And for doing a signature for us.

 

Of help to you, and your doctor now, I think will be:

*Tips for tapering off Risperdal(risperidone)

^ the bulk of information is right in the very first post in that topic.  I think you'll find that some of your questions may be answered, right there, in that topic too.

It looks like if you can hold on to your dose, for an hour, at least, before the nauseau of the morning sickness hits.......you may be okay, as far as it's absorption.

 

On switching to liquid form of risperidone, you may want to opt for doing this:

"While bioequivalent to the tablets, the liquid may be absorbed faster. This might cause odd symptoms. To make a change from tablets to liquid, we recommend taking part of the dose in tablet and part in liquid form if possible, then gradually convert to all-liquid, if that is desired "

 

The information that carefulprayerful gave you on crossing over from tablet to liquid, was also correct.  With just a minor variation, as to the way we suggest doing crossovers from tablet to liquid formulations.  Thank you @carefulprayerful

 

I agree with your psychiatrist on the, if it's working, why change it statement.......as far as making changes in how you do your daily dosing.  Generally we recommend changing timing, by an hour only each day.  Continuing on this way, until you have gotten doses at the times preferred.

 

And I am very thankful, that you feel that you have a good working relationship with your prescribing doctor now, as well as an Ob/Gyn following you and your pregnancy.

I hear much strength in you, in going forward, gathering information, and doing the best you can with it all.

 

I, personally, don't have the experience of using risperidone, during pregnancy, and or tapering during pregnancy.  I was on a MAOI antidepressant myself, during my one successful pregnancy.  It does have a tough WD syndrome, as I found out later, and I went with my doctors(OB gyn AND psychiatrist) advice at that time, to stay on it.  This was back in 1991 and 1992, the year my son was born.  So, quite some time has past.  He is now 27 and doing well enough.  SUN, I call him here.  ❤️  No one ever wanted to follow us, he and I, post birth(as far as potential medication effects on him)........which is good or bad, I don't know.  It might have helped others for them to gather data.  And it IS now 2019, so don't be basing your decisions on my old and somewhat moldy experience. 

 

The general philosophy of gradual tapering:  Why taper by 10% of my dosage

 

Welcome again Sunnytrail.  I'm going to stop here now, as to not overwhelm you with information, all at once.  And may have not gotten to all your questions yet, but did want to get your topic going, and approved for now.  Such a positive attitude too, that you have.  So hoping that pregnancy agrees with you.  Is this your first?

This is your Introduction topic.  Ask questions here, and communicate with the other moderators, and members as well here.  And keep us updated, please.  Thank you.

 

Love, peace, healing, and growth,

manymoretodays

p.s. your written English is just fine!  And please ask, if needing any further clarification, on mine!

 

 

Edited August 31, 2019 by manymoretodays
grammar corrections, further comment

[carefulprayerful]

SunnyTrail, 

 

I just wanted to explain what I said before a little better.

 

I get a liquid prescription from a manufacturer in the U.S. that comes with a 3 mL oral syringe in the package with the bottle of risperidone.  This syringe measures in increments of 0.02 mL, i.e., from 3.00, 2.98, 2.96, 2.94, 2.92 all the way down to 0.10, 0.08, 0.06, 0.04, 0.02.  

 

I do not use that one. 

 

I use Baxa syringes because I read on here that they are a pretty good brand.  The 1.0 mL Baxa syringe measures in increments of 0.01 mL, i.e., from 1.00 mL, 0.99 mL, 0.98 mL, 0.97 mL all the way down to 0.05 mL, 0.04 mL, 0.03 mL, 0.02 mL, 0.01 mL.  

 

So that syringe is more precise than the one that comes in the drug packaging. 

 

I actually wanted to make even smaller reductions than 0.01 mL, however...

 

The website that I gave you a link to explains how to make very tiny reductions in dose by first diluting the drug.

 

I called a compounding pharmacy to ask some questions and also asked some questions on this website and found out the following: the liquid prescription that I get here in the U.S. is an aqueous solution, meaning the risperidone is dissolved in water (the molecules of the drug are evenly dispersed in the water because they are dissolved in the water).  Because it is an aqueous solution, or a solution in water, I can just add more water, and the solution will simply be more dilute.  The drug will still be evenly dissolved, just in a larger amount of water.

 

So I found out that there was no need to get a compounded liquid from a compounding pharmacy to get something more dilute.  For example, if I wanted 1 mg risperidone in 60 mL, I would just take 1mL of the liquid prescription from the manufacturer and add 59 mL of water.  I could just use the liquid prescription from the manufacturer and make a dilution at home. 

 

I just wanted to explain what I said I do.  I don't know chemistry.  My understanding goes about as far as what you just read!  I hope I haven't made any mistakes with my explanation and that you will find the information you need. 

 

There are a lot of nice, helpful people here.  Your English is great!

 

Best wishes, 

CarefulP

[SunnyTrail]

Hello @manymoretodays,

 

thank you so much for posting and getting back to me. I really think that this site is such an important help for all of "us" as it seems so difficult for people who are not affected by ad and ap medication to relate to us.

 

Thank you very much for a first brief insight into the topics, particularly with focus on the tips for tapering off risperidone. In the meantime I was also looking for more information on the matter. As you pointed out, it indeed seems to be overwhelming in the beginning and it surely will take some time to get a hang of it. However, it is also comforting to see that there are certain patterns which help to make some general assumptions (about tapering, symptoms, etc.) and to develop a routine.

 

It seems that everybody/every body copes different with medicine, so also for me there will not be one right bulletproof answer, but what I will definitely wait out is the next appointment with my gyn next week. I also requested a counseling on my issue (Risperidone during pregnancy) with one of the biggest medical research facilities (which is funded by tax-money, not by private investors/companies) who have gathered quite a lot of data on medication, but also medication during pregnancy, and I hope to get more information from them.There is just not a lot of information on long-term effects of pregnant women on their babies and later on growing children. As also everyone is different I guess there exists no blue-print. But I am happy to forward my medical history/journey to a research facillity that gathers information and try to derive implications. So if anyone of you knows about a central research facility that I can foward my data to, let me know. I think that might be a first step of providing help for others who deal with a similar situation.

 

I am happy to hear that you also have a son, so you can relate to my situation (and yes, it is my first pregnancy). I just skimmed through your history really quick and it seems you and SUN had quite a bumpy road, but I am happy (at least from what I understood from the posts that I read) to hear that within these circumstances the both of you have a functioning relationship. I cannot express how much it helps to know that you can relate to my situation.

 

I am so torn between what the next steps should be: remain at status-quo throughout the pregnancy, tapering down, shifting to a liquid form of medication, etc. It is a relief to see from the other posts that there are quite a lot of people here that change their mind quite frequently and/or second-guessing their decisions. Not that this is a good thing, but it helps me to see that I am not the only one dealing with these inconsistent thoughts issues. At the moment I am rather on the status-quo side as I read that withdrawal symptoms can affect the nutriant processing from the placenta to the baby and I do not really want to risk it. Also, from what I heard is that some people who experienced withdrawal symptoms also needed to hold their taper for half a year, so the question is whether or not it would really be worth it to take the risk, depending on of course how big the positive impact of reduced level of medicine on the fetus....just reading through these lines make me aware of how torn I actually am. Furthermore, as @carefulprayerful pointed out as well as the first posts of the thread on tapering off risperidone, some people really struggle with changing from the pill version to the liquid version and at this point I cant really assess how sensitive my cns actually is. Another reason why I would not necessarily start tapering now is because I am still in my first trimester and I feel so weak and nauseated that it could further wear me out, but I would also have a difficult to differentiate between withdrawal symptoms and pregnancy symptoms.

 

A big help, which I have not mentioned yet is my hubby. Last year as I was in the hospital he took a short-term sabbatical for two months to be able to visit me at the hospital every day. While the last year  struggled really hard with the symptoms and then with the medication (mainly fatigue and having no drive) he was always very supportive. He used to work as a researcher and was the one who tried to get further information on tapering and the whole risperidone-plasma level / D2-receptor-occupation ratio and the corresponding withdrawal effects. If it would not have been for him I would have reduced my Risperidone by 0,25mg every three to four weeks now not knowing what the side effects would have been. He is also so flexible in the job that he can be a good support during the baby years because at the moment I have the feeling that I cant get anything done, but which can be also because I am overwhelmed by the whole pregnancy issue and the pregnancy hormones which wear me out quite a lot...but I am definitely looking forward to having a baby.

 

Another thought which keeps running through my head: How did that all happen?? I was perfectly healthy, I was always very very happy, with a lot of energy and motivation and one and a half years ago all of the sudden I started to think that people talk about me and grew increasingly suspicious over the next couple of months until I really started hearing voices that were not there and developed a severe paranoia in the form that I thought every one in public was spying on me. I also do not know of any cases in my family on that. Is that possible that it just comes out of the blue after 30 healthy years?

 

Well, thank you so much for taking the time and for having replied. I will keep posting about the further steps.

 

Have a great Sunday,
Sunny

 

[SunnyTrail]

Hello @carefulprayerful,

 

thank you very much for your replies, also for laying it out to me in detail as well as giving informaiton on which syringes you would suggest to use. Thank you also for giving me a heads up that not everybody transitions well from the pill version to the liquid form. Given my situation with pregnancy and feeling tired because of the hormones anyhow at the moment I am thinking about waiting to change the form of my medication followed by tapering maybe until after birth...but as mentioned above, I have not really decided yet. To be honest, it also scares the crap out of me to think about the side-effects of switching the form of medication, not to mention of tapering down. I read some stuff on tapering down on this website already and in order to not take such a high risk I consider tapering according to the brassmonkeymethod (2,5% down every week for four weeks and then taking a two week hold) as it seesms that this is less a shock for the system than starting off with 10% all of the sudden and see what happens for four weeks. I also have no sense for how sensitive my system actually is. E.g. if I could taper down from 1mg to 0,75mg within a month without my body responding badly about it or not. But I guess it is too high of a risk. It also hurts me if I dont continue tapering now because I have taking risperidone just a little over one year, if I hold now then my body has actually more time to get adjusted to the risperidone and then it might be more difficult to come off :-(

But I guess there is no ideal way and what I have read so far the risks of set-backs by reducing too fast seem not to justify the risks to taper too quickly, even if this is difficult for me to internalize.

 

Thank you very much for your suggestions and explanations on the liquid and I keep you posted on how I decide.

 

Hava a nice Sunday,
Sunny

[SunnyTrail]

So, another update from my side: Today I had my counseling session with the research facility that I have been talking about in a prior post. My question was how to progress with my medication when I am pregnant. Most of the news I received I knew before, but it is still a great help. My psychiatrist was not up-to-date with prescribing me Risperidone as a recent study showed that Quietiapin caused less birth defects than Risperidone, even though one needs to take into account the risks involved with changing the medicine. Risperidone already makes me sooo tired and unmotivated. The counselor said that the effect of Quietiapin might have been even stronger, so I dont even want think of the effect of that med on me. The counselor also said I need to look up for a hospital with a Neonatal Intensive Care Unit, which I have already researcherd. Particularly when being born too early there are frequently adaptation problems with the baby. Unfortunately I planned to taper off my Risperidone until November, so that this would not have been necessary. The counselor also said that there are only very few cases where going off Risperidone caused negative side effects, particularly those that lasted more than a few days. Comparing his statement with this website makes me sad. Particularly the fact that the relevance and intensity of withdrawal symptoms unto APs are not being considered by the doctors as they should. He also said that 1mg dosage is so low that it would not make a significant difference if I would be tapering down to 0,75mg by the time I give birth. But if I look at the graphs depicting the logarithmic correlation between plasma level and D2-receptor occupancy I have the feeling it makes quite a lot of difference. Once more I am quite confused on what to do, but I lean more towards keeping everything as it is until after birth.

[manymoretodays]

Hi SunnyTrail,

Yes, I know.  It's a tough decision, as to what to do.  You get to ultimately decide though, based on a lot more information, than was available to me, way back in the early 90's.  I think you are logically working your way through a ton of stuff now.  You're getting lot's of input now from many sources, and of course, that can feel overwhelming.   You'll sort through it just fine, I'm sure.

 

I recall a lot of emotion, early on in pregnancy.   And then.....later, a whole lot of just tired.  I'd eat, sleep, work and that was about it.

  Lot's of hormonal shifts going on.   Going to a bit of logic now,  will help keep you balanced.  And ultimately, I think you'll feel less confused, going forward.  And will make the right decisions for both, you and your baby. 

 

I'm just going to add in some more links, in case you have not seen these ones yet.

 

More links to information, experiences, AND some discussions too.

On site: 

Here's our thread:  Antidepressants/withdrawal during pregnancy

From the Journals and Scientific sources forum:
Einarson, 2001, Abrupt discontinuation of psychotropic drugs during pregnancy

 

A 90 minute free self study on: Antidepressants and Pregnancy from the MIA(Mad in America site)

 

And although, these links do talk more about SSRI's than the AP's, it may give you more to go on.

 

I had a great pregnancy, to my recollection, and absolutely no post partum problems at all.  The pregnancy and post-partum hormones, really seemed to agree with me.  I also nursed my child for about 9 mos.  That might have helped with my babies WD, as well. 

 

Okay, and thank you for your continued updates, and thoughts.  We are here for you. 

 

L, P, H, and G,

mmt

[SunnyTrail]

Hello Manymoretodays,

 

thank you so much for your reply and for the threads you shared with me. They were incredibly helpful. Yes, it is really challenging to have a logical approach with all the hormonal rollercoaster. Fortunately, morning sickness is not so prevalent anymore. If I feel sick, mostly before 9 o clock, so I shifted my Risperdione take-in to 10am/10pm to make sure it stays in the system. I am incredibly tired thought. Yesterday I slept four hours in the afternoon because I could not handle it anymore to stay up. However, then I had issues sleeping at night, so it backfired a little. It is also really difficult to assess whether the symptoms I am experiencing at the moment are exclusively attributed to the pregnancy as I was tapering down from Risperidone quite fast over the last half year and some of the withdrawal symptoms do not kick in until a couple of months later. I am definitely still in the waves and windows pattern. There are days when I can smile a lot and get things done and there are other days where I am just a shell.

 

I am considering keeping everything stable until I am through 13th week and then gradually shift to the liquid version which might be a little bumpy. But I think now I do not function anyhow completely and once I gave birth any stress for the body might be too challenging. If I can switch to the liquid version of Risperidone before, then I can also start microtapering according to the Brassmonkey Slide Method as I have the feeling that it might not be to stressful for the body and the fetus.

 

https://www.survivingantidepressants.org/topic/17671-the-brassmonkey-slide-method-of-micro-tapering/?tab=comments#comment-347786

 

Unfortunately there are not so many experiences with tapering and pregnancy yet, but I am glad if I can contribute by sharing my experiences. After all, as what I can read in most threads here, everybody responds differently to medication, tapering, etc. Therefore, the best I can do is to listen to the signals of my body and to taper very conservatively.

 

Thank you very much once again for sharing your insight.

 

Best wishes,

Sunny

[SunnyTrail]

Hello,

I just wanted to drop a few lines to let you know that I am okay. Pregnancy sickness really kicked in. That's why I haven't been around. Good news is that judging from the ultrasound the baby seems to be alright 😊 I was very very tired though, which might also be attributed to the pregnancy. I have gradually shifted my morning dose towards the afternoon. I take 0.5mg at 9 o clock at night and 0.5mg at 2:30 in the afternoon, shifting the afternoon doses gradually towards evening by 30 minutes every other day. Tomorrow I will have a counseling session with my doctor pushing for a liquid version of Risperidone so that I can gradually change from tablet form to liquid version starting mid of October over the course of 4 weeks. The plan on what to do next I will actually decide in November depending on how I feel.

While the past weeks were extremely exhausting, today was the first day with a lot of windows again. I even started reading a book which I haven't done in one and a half years.

I will definitely keep you posted. Thank you all so much for all this info on this website without which I would not know what to do and simply just fee lost.

[carefulprayerful]

Glad to hear you and your baby are doing well!