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gemini88: tapering off risperidone / Risperdal

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gemini88

In july I was diagnosed with psychosi due to ptsd. I was in an abusive relationship. I started the resperidone 3mg in july and I am supposed to be tapering off in June, and Im a little nervous about the withdrawal and other things. Im just curious has anyone been successful in tapering off risperidone? All I have read are horror stories. I am supposed to taper off this drug and I wont be put on any other drugs, and I was just curious if anyone has come off risperdone without being put on any other meds? Are you able to feel emotion again? Did the psychosis return? Did the mask-like face go away? Will I return to normal I guess is my question.

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Gridley

Hello, gemini88 and welcome to SA.  I'm glad you found your way here.

 

To give members the best information, we ask them to summarize their medication history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly?

 

  • Any drugs prior to 24 months ago can just be listed with start and stop years. 
  • Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago) 
  • Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016. 
  • Please leave out symptoms and diagnoses. 
  • A list is easier to understand than one or multiple paragraphs. 
  • Link to Account Settings – Create or Edit a signature.

You mentioned tapering off the risperidone in June.  At what rate are you planning to taper? At Surviving Antidepressants, it is recommended that a person taper by no more than 10% of their current dose with at least a four week hold in-between decreases.  The 10% taper recommendation is a harm reduction approach to going off psychiatric drugs.  Some people may have to taper at a more conservative rate as they are sensitive to even the smallest drops.
 

Why taper by 10% of my dosage? 

 

To get you started, and familiarized with the protocols followed by SA, I am linking a few topics so that you have a better understanding of what is recommended here. 

 

 
You can do it.  For some risperidone success stories, google: "survivingantidepressants.org risperidone success stories"
 
This is your introduction topic -- the place for you to ask questions, record symptoms, share your progress, and connect with other members of the SA community. I hope you'll find the information in the SA forums helpful for your situation. I'm sorry that you are in the position that you need the information, but, again, I am glad that you found us.
 
Best,
Gridley
 
 

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gemini88
37 minutes ago, Gridley said:

survivingantidepressants.org risperidone success stories

Thank you for all the information.

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gemini88
On ‎1‎/‎19‎/‎2018 at 4:31 PM, Gridley said:

survivingantidepressants.org risperidone success stories

For anyone who is wanting to know about tapering this drug. I am starting my taper. I was on 3mg of respirdone, and my pdoc has bought me down to 2.5 mg. I don't know the withdrawal affects yet, as this will be my first day taking the lower dose. I will continue to write updates. but I will be on the dose of 2.5 mg for approx. 2 months, and then I will taper again. wish me luck. I wasn't supposed to start my taper until June, but after speaking with my pdoc, she and I feel I am stable enough to start now. It is February 8, 2018. again I don't know the withdrawal symptoms yet, as I have just started my taper.

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Gridley

It is good you are going to hold for two months to allow your nervous system to become accustomed to the lower dose.  Please do not allow your doctor to taper you more than 10% of your previous dose.  At the lower doses of these drugs, it is especially important to taper very slowly.  Tell your doctor you want to go very slowly.  Good luck.

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gemini88

Thank you will do.

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gemini88

This is day 6 on the taper, and still no withdrawal symptoms to note. I recognize that this is still early in the taper, however I just wanted to keep a journal of my status.

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Glosmom

Hi Gemini88

I have been helping my 22 year old daughter taper off risperidone and what a journey it has been.  I have her taper schedule in my signature and we are getting ready to decrease her to  0.60 (from 0.65 mg) next week.  She is starting to really show parts of her personality again at the lower doses, even singing in the car this week.  She hasn't sung in the car in almost a year and 1/2 so we are very happy to see that new behavior!!

 

We tapered her too fast the first time (with her doctors okay at reducing every two weeks) that was a big mistake. We had to start over and almost tried too fast the second time.  We are now going by what her symptoms are after each decrease and are having much better success.  Always seems if she holds or two months before a decrease she does really well with the next reduction.  However, there have been times when her withdrawals have cleared up sooner and we have decreased her after 3 or 4 weeks too.   She does have withdrawal symptoms after each decrease no matter how small and it is agonizing to watch. But each time she gets through it and more and more of her true personality shows through the lower her dose gets.  We have hope for her for the first time in a long time. We know we have many more months of her being on this medication since the taper is slower than we ever thought we would need to go, however....we are getting there.  Hang in there and be sure to read all the good information Gridley supplied...it is very helpul.

Best of Luck to you!

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gemini88

 

9 minutes ago, Glosmom said:

Hi Gemini88

I have been helping my 22 year old daughter taper off risperidone and what a journey it has been.  I have her taper schedule in my signature and we are getting ready to decrease her to  0.60 (from 0.65 mg) next week.  She is starting to really show parts of her personality again at the lower doses, even singing in the car this week.  She hasn't sung in the car in almost a year and 1/2 so we are very happy to see that new behavior!!

 

We tapered her too fast the first time (with her doctors okay at reducing every two weeks) that was a big mistake. We had to start over and almost tried too fast the second time.  We are now going by what her symptoms are after each decrease and are having much better success.  Always seems if she holds or two months before a decrease she does really well with the next reduction.  However, there have been times when her withdrawals have cleared up sooner and we have decreased her after 3 or 4 weeks too.   She does have withdrawal symptoms after each decrease no matter how small and it is agonizing to watch. But each time she gets through it and more and more of her true personality shows through the lower her dose gets.  We have hope for her for the first time in a long time. We know we have many more months of her being on this medication since the taper is slower than we ever thought we would need to go, however....we are getting there.  Hang in there and be sure to read all the good information Gridley supplied...it is very helpul.

Best of Luck to you!

Thank you so much for your comments. How are you reducing at 10% ? Are you using the liquid form of resperdal to taper?

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Glosmom

yes, we switched to liquid risperdal back in May. Our psych doc didn't want us too because he thought/thinks one can decrease in increments of  25 mg at a time.  But after much discussion he finally agreed. Plus she was, at that time, on divided doses  ...   0.50 mg in the morning and .75 mg at night for a total of 1.25mg.  So we were cutting down just one of the doses.  we eventually combined her doses into a once a day regimen (which she did much better with, btw) and have stayed on the liquid ever since.  We have to be VERY exact with our dosing because any small change in dose causes increased psychosis and withdrawal symptoms.   So i recommend the liquid but be vigilant about amount (and time of day)

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gemini88
20 minutes ago, Glosmom said:

yes, we switched to liquid risperdal back in May. Our psych doc didn't want us too because he thought/thinks one can decrease in increments of  25 mg at a time.  But after much discussion he finally agreed. Plus she was, at that time, on divided doses  ...   0.50 mg in the morning and .75 mg at night for a total of 1.25mg.  So we were cutting down just one of the doses.  we eventually combined her doses into a once a day regimen (which she did much better with, btw) and have stayed on the liquid ever since.  We have to be VERY exact with our dosing because any small change in dose causes increased psychosis and withdrawal symptoms.   So i recommend the liquid but be vigilant about amount (and time of day)

Thank you so much! This is very encouraging.

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gemini88

Day 12 and no withdrawal symptoms to note.

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gemini88

Day 19 no withdrawals to note.

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Glosmom

That is good to hear gemini88!  Keep up the good work and remember slow and steady is best!

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Glosmom

How are things going gemini88?

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gemini88

Things are going well. I am down to 2mg per day... Im going to slower the taper as I get closer to 1 mg. but there aren't withdrawals to note... I just really want to be off the drug already. How is your daughter doing?

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Glosmom

Good news that you have no withdrawals to note! When did you go from 2.5mg to 2?  Glo is now on 0.5mg.  We just reduced her dose on Monday. She was doing pretty well. We heard her singing more so that was good news!  She unfortunately has withdrawal symptoms every time we reduce her so, she will not be feeling well for about another 8 days and then she is usually much better after 3 weeks of a reduction.  We still haven't seen her return to her 'normal' since this all started 2 years ago but she is doing better than she was.  My instincts tell me she will finally really start to feel better and be more of herself once this drug is completely out of her system.  I hope you continue to do well!  Best Wishes!

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gemini88

Thank you. and I reduced down from 2.5 mg to 2 mg the 9th of this month. I will be going to the dr on Monday. I plan to have my script written for 1.75 mg, and then the next month 1.5 mg I seem to be doing well with tapers around 20% or less... so I think Im going to continue this until I get to 1 mg and then switch to the liquid form and taper by 10 percent cuts... I want to get off this med but I want to minimize withdrawals, and I don't want to relapse at all. So I am hoping my schedule will work. My pdoc wants to taper me by .5 mg all the way through but I am going to have a talk with her this Monday so that she is aware how I want to pace things. Thank you for thinking of me, and Im glad to hear your daughter is making progress. She will return to her normal self all in time. Take care.

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Glosmom

That sounds like a good plan.   I have read that it is easier to drop a litter more easily from larger doses. Glo had relatively few symptoms dropping from 1.5 to 1.25mg.  We started with 10% or less drops after 1.25mg.  Glo's pdoc didn't want to prescribe liquid for her at all. It took quiet a bit of discussion to get him to finally do it.  She had some issues going from pills to liquid as pills are very exact, liquid takes practice and precision to get the exact dose each time. So you might want to prepare for a little unsteadiness when you switch to liquid. I would recommend switching to your exact pill dose and hang there for a week or two to just make sure you jumped over smoothly and then decrease from there.  It is important to tap out all the bubbles in the syringe too.  Good luck with your appointment on Monday!

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gemini88

Hi Glosmom how are things going with your daughter?

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Glosmom

Hi gemini88!  How are things with you?  Glo is hanging in there we deceased her 3 weeks ago and she has had some 'new' withdrawal symptoms after the last drop. She started pacing a lot more, had really bad increased urinary frequency for 4 days and now it is a little better, but still not normal.  The good news is that she is in less of a fog.  She is responding to questions better and doing more of her own activities of daily living (on/off toilet, in/out shower, eating, not staying in her room to eat)  So those things are good. She still doesn't talk much although she is singing more.  I think this last decrease has been hard on her though, so we are definitely holding her here for at least 8 weeks, or more if she needs. Thanks so much for checking in and let me know how your are!  :)  Hope you are doing well. 

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gemini88

That's really good news that she is making those improvements. Its really motivating for me. I am ok. I am still on 2mg. I go to the drs on Thursday to reduce my doseage. I am considering staying on 1 mg. My problem is that I was diagnosed as bipolar. and my fear is that I may become manic and that will lead to the psychosis again. So I read that 1 mg of Risperdal can curve the mania. I just really don't like the feeling of having no emotions, and the brain fog I have. There are times where I have conversations with people and Im really interested in what is being said but I really don't have a response of anything to say. I used to be very social and outgoing before this medication and now Im more reserved. The other issue is the weight gain of being on this medication. But again Im really concerned that I may become manic with psychotic features again. My doctor told me that she although Im bipolar the psychosis was bought on by stress, and she didn't think I would need to take Risperdal for the rest of my life. But at that time I was also taking a mood stabilizer. I just really don't want to be on medication, but I know I may need it. So Im going back and forth with the idea of staying on it. What do you think? Do you think I should try med free and then if something happens go back on it? Or do you think I should stay on 1mg and just keep it at a low dose for maintenance? If your daughter felt anything like how I feel on these meds than I could see why she sticks through the withdrawal symptoms to get off. She is strong for what she endures each drop. Thanks for reading. I know I was going on and on. lol..

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Gridley

Gemini, what are you planning to reduce your dosage to when you go to the doctor on Thursday?  The 20% taper you mentioned in an earlier post is twice the rate we recommend.  At the lower doses it is especially important to go slowly.

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gemini88

I was planning to reduce it to 1.75 mg.. and continue to taper down each month until I get to 1 mg

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Glosmom

HI Gemini,

Thanks for checking in.  I think if you decide to taper more,  the safest thing is to follow the moderators advice and reduce by 10%. I know the pills only come in increments of .25 mg, so maybe your doctor would agree to move you to a liquid so you could do that? If they do write for a liquid, you will have to allow time to make the crossover as going from pills to liquid, even at the same amount, can cause imbalance.  So be sure to read the information on switching from pills to liquid on this website.

 

 I just know that my daughter is not 'normal' by any means on risperdal.  I believe with my whole heart that we have a better chance of 'getting her feeling better' after she is off of this medicaiton.   So our motivation is to taper her off to zero, no matter how long it takes to get her there. THis has been a hard journey for her and her family, but i see progress. Just today as she goes through her last week of school she was attempting to sing in the car.  She only started to try and sing in the car since we have decreased her dose and she got under .65 mg. She used to sing in the car all the time before the prednisone incident and before being on risperdal.  We know the journey is hard, but the improvements and the light at the end of hte tunnel makes it all worth it.

 

 You are the only one who can decide if you want to stay on the medicine or taper more.  As mentioned many times by the moderators and others...psychiatry and the doctors that practice in this area don't typically think getting off of medication is a good idea, even with the patient wants to come off.  It takes courage to go the journey. It can feel like you are alone....but you can read the many stories here that you are not alone and we are here to support you.   

 

Good luck and stay in touch!

 

 

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Altostrata

Gemini, if you're worried about the re-emergence of psychiatric symptoms, going more gradually will give you more confidence. You can stop at any dosage if you feel you're losing control.

 

Please note that bipolar disorder is vastly over-diagnosed and nobody knows how to treat it. You have to decide yourself if Risperdal, with all its health risks, is doing you any good and what dosage gives you the most benefit with the least side effects.

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gemini88

Thank you all for your support. I am definitely going to give everything some serious consideration. It means a lot to be able to speak to people who have similar backgrounds. When I talk to my family they cant really understand because they really cant relate. I appreciate you all. and you don't know how much. :-)

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gemini88

Hi everyone. So I have continued with my taper and last night was the first night I reduced to 1.5 mg... I will keep updating my progress so that anyone researching and going through something similar will be able to read through my journey. Its too early to determine if there are any withdrawals or noticeable changes but time will reveal everything. I spoke with my new pdoc and he has advised me that going off the antipsychotic is the right move. However, he wants to put me on a mood stabilizer and I have to be honest I have read so many bad reviews about different mood stabilizers that I am just not interested in going on any. I realize that Altostrata informed me that bipolar is over diagnosed so im wondering what would happen if I decline a mood stabilizer. I just don't like the feelings of being on psychotropic drugs. It wipes away my personality. anyway Im rambling on. Wish me luck on my continued taper!

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Glosmom

Hi Gemini!  How are you doing since your reduced to 1.5mg?  That is typically a bigger jump than recommended on this site but i have read some people can take bigger decreases when they are above 1.5mg. Eventually most (not all) have to start using the 10% method. You did a nice hold though at 2mg so that is good.  Hope you are doing okay!!  glosmom

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gemini88

Hi Everyone.. Just an update. I'm now down to 1 mg of Risperdal a night. At first I had my reserves, but I have decided I will be staying on this dose, and use this for treatment long term. Since decreasing to 1 mg I feel a lot less medicated and more control. I also don't feel as emotionally flat as I did at the higher doseage. I have also changed doctors, and I really feel comfortable with this doctor. He took the time to reevaluate me and go over my paperwork. So in a nutshell, Im definitely bipolar 1. Its not for certain that I may have another manic episode, but given that I have had one with delusions and psychosis, I am at higher risk for having another one. But again since the reduction of Risperdal to 1 mg I honestly feel a lot less medicated, and am told I am showing a little more of my personality. There have been no withdrawal symptoms in my reduction which is good given the amount I reduced in the little time I reduced it. One concern I have is the weight I have gained. Id like to drop at leaste 15 pounds, and Im not so certain I can do it on this medication. We will see. but Good luck to others withdrawing from this medication. Gloss mom how is your daughter doing?

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Glosmom

Hi Gemini! I am very happy that you have successfully reduced to 1mg without symptoms. Holding at this dose for awhile is a good decision.    Every one's journey is different so I hope you keep your mind open and don't make any 'permanant decisions' at this point to stay on this med long term. Of course it is your decision and having a good relationship with your doctor is important. Ultimately it is your life and many people do very well with getting off medications even after someone has diagnosed them with 'bipolar' or some other "psychiatric diagnosis."  I work in the health care field and have spent now 2 1/2 years caring for glo due to the ill effects of being on medications...so i have a different view point and look forward to the day her body will be clear of man made medications.

 

I respect that you have to do what you need to do, however, and wish you the greatest success!!  Feeling good is really what is most important and I am so glad you are doing well! 

 

Glo is hanging in there.  We are continuing to reduce her dose and see sparks of her personality show up at times.  She is super sensitive to his medicine so full recovery won't happen until after she reaches zero.  But we are all hopeful and can see the light at the end of the tunnel.  

 

Best wishes to you, Gemini!! Thanks for your update. glosmom 

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gemini88

Hi Glosmom Im glad she is making progress. and Im glad you all have patience with her and are not giving up.

 

So. I know I have been a little all over the place with my decisions regarding the medication. However, after much deliberation with my doctor, we have decided to try and see how I do off of the medication.

 

So its been two and a half weeks now and I have been off of the Risperdal. The only withdrawals I am experiencing are mild insomnia and like a low level depression seems to be lingering. The depression is kind of weird because I've never experienced that in my life. I mean I have had times when I've been sad but never depressed. So this is something new to me. Its nothing too crazy where I'm having suicidal thoughts or anything. My spirits are just low..  Now my sons father did pass away in September. So that may also contribute to it a little. But I have read that the depression is normal with withdrawal and should pass by. It is definitely getting a little easier as the days go by so that's a good thing.

 

I have been using Benadryl and ZZZquil to counteract the insomnia and I am able to sleep. The only thing is I kind of feel a little groggy when I wake up. But Ill take that over not sleeping anyday. Other than that there really are no other withdrawal symptoms. No anxiety, no hallucinations, no headaches, no rebound psychosis, nothing. Which is good considering I stopped at 1 mg. I don't advice anyone else to do that. I think it is important to taper lower and then come off. However, I didn't really have any issues with withdrawals in reducing so that's the reason I stopped at 1 mg.

 

I will say that libido wise, I can definitely tell Im off the Risperdal lol! Its not all the way back, but its definitely a lot stronger than when I was on the Risperdal. So I imagine that will take a little time to come fully back.

 

Emotions! A big one. While on the Risperdal I kind of felt like my emotions were constantly at a baseline. Like I couldn't get too excited (mad,sad,etc). I was just kind of at this baseline. Well after only two and a half weeks of being off the Risperdal, I feel my emotions starting to come back. Im still in the early stages, however this is something I can really appreciate.

 

The reason I am being so detailed in this post is because inquiring minds want to know. And there are not a lot of people who support the idea of coming off medication after an initial diagnosis of bipolar. Were encouraged not to challenge a professionals opinion. So there is very limited information about coming off these meds as a result. But that doesn't mean that there are not questions. I don't want to say that I am in denial about being diagnosed bipolar, I just know that I have been doing a lot of research since my diagnosis on bipolar and there are a lot of things that just don't align with what I went through. I haven't made this decision to come off meds out of ignorance, I have educated myself on the many possibilities that can happen. I haven't ruled out going back on the medication if it is needed in the future. I just know that I don't really know what happens until I try. so Im trying. I just want to make sure that I can provide as much information with my experience for anyone else who may be going through something similar. I'm going to come back on in a month or so and just update on how I am doing. Take care!

 

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Glosmom

Hi Gemini!

Wow that is a big update!  Thanks so much for sharing it. I so wish you great success with being able to stay off of Risperdal (or any and all antipsychotics) and i hope any withdrawal symptoms you have are kept to a minimum.  As you and I both know this website does not advocate for CT but as you stated......

1 hour ago, gemini88 said:

I haven't made this decision to come off meds out of ignorance, I have educated myself on the many possibilities that can happen.

 

I look forward to your updates and will be sending positive energy your way!  Glo is getting close as she is now at .3 mg and has managed this latest decrease pretty well.  We hope to have her off in January barring no changes in how she manages the remaining decreases.  We have often thought about stopping her med completely but we have made it this far and since we are so close, we plan to continue the taper. I think her jump off point will be either .1 mg or .06 mg. We just have to see how the next few months go.

 

Below is an excerpt from RisperdalHater's success story...Just wanted you to have the timeline in case you start to experience any similar sypmtoms.  Might be nice to have a comparison.  Best Wishes Gemini!!!! 

 

Quote

 

I took risperidone for about 3 weeks, i recall starting off with 2mg doses daily then after a few days i complained about drowsiness and feeling weird so they lowered the dose to 1mg then after a few more days they worked their way up to 3mg daily and a long with that i received a long acting 7mg injection which can be taken once a month (as i recall).  

 

towards the end of me taking the drug i started feeling very very drowsy and i recall saying in a pathetic weak voice "I don't like this, i want to stop", so i dumped the risperidone in the trash and never took it again, i stopped cold turkey.  the next week and a half or so i went through the worst experience of my life until that point.

i had:

 

- constant shakiness

- could barely sleep

- extreme sadness

- seemingly a complete absence of happiness

- serious muscular fatigue and weak blood flow

 

these all disappeared after that week and a half except for the muscular fatigue and weak blood flow.  the sadness/blah feeling got better at an extremely slow pace.  libido died of course (pretty common with risperidone). thankfully i did not grow breasts or lactate like some of the victims of risperidone, perhaps they took it longer or took a higher dose.

 

month 1-10 i was a fatigued wreck, people asked me why i looked so sad, i had to force my smiles etc.  month 8-10 or so (as i recall) got slightly better but nothing big, just slight improvements. 

 

month 10.5 = more slight improvements in energy. nothing to be excited about though. 

 

month 11-14 is when the healing starting picking up its pace.  i was hopeless at one point.  i don't care if you've been on the drug for years, i still sincerely believe you will get better, just get off of the drug. taking this drug is not how a human being is supposed to live.

 

 

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gemini88

Thank you so much. and I am sending positive energy to Glo!

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sunnylou

Hi Gemeni,

I noticed on 19th January this year you were on 3mg. I am surprised it has been easy for you with no withdrawals.. I am worried about tapering less than 1mg still. I hope you carry on being OK . I am taking the very slow route by lowering no more than 10% of the current dose. I really do wish you well. I couldn't help but say hello! 

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