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Raloxifene treatment for (mainly) cognitive and negative symptoms


#1

Hey guys,

I have the oppertunity to join a duble-blind study with Raloxifene to counter cognitive symptoms.
Study info

I have searched around and the results of previous study’s are quite positive. Raloxifene can be used both in men and women.

More info about Raloxifene in the treatment of schizophrenia here and here

Because the study site is 3 hours away from my home and more important because I might get the placebo, I’m considering not to join the study. Instead of the study I’m considering ordering the real Raloxifene from a reliable online pharmacy and try it, 3 months supply is only $150,-

What should I do?


#2

I wouldn’t take meds without a doctor’s supervision. Can your doctor monitor you and suggest the appropriate dosage?


#3

In the study I will be monitored 6 times. Though, (serious) side-effects of Raloxifene are quite rare so instead of my chance in swallowing placebo for 3 months, I’m considering just ordering the real deal (with my pdoc as “monitor”).


#4

If you’re from the EU and are willing to pay then I’d just go the official route and get on Reagila if I was you. I’ve been on it for over 2 weeks now and in addition to helping my negative symptoms it helps my cognitive symptoms a bunch as well. It costs 100 eur for 28 days and you’re not going off label. Plus once it gets approved in your country you wouldn’t need to pay anymore.


#5

Where do you live and where do you get it from? Once it’s on the market in the Netherlands I’m going to switch to Reagila.


#6

I get it from the “official” route, its registered in my country, I’m from the EU. My doc said it won’t be approved in my country until a couple of years even. She could write a script for me and they ordered it for me, the downside is I have to pay the full amount which is just under 100 euros, I imagine it’d be the same for you. You don’t have to wait until it gets approved, technically it’s on the market already just not approved.


#7

Yes, that’s also what I have read, that I’m technically am able to get it prescribed already even though it’s not officially on the market yet. I asked my pdoc last week and she told me to contact the pharmacy about this. So I contacted them and they told me that it’s not registered yet and therefore are unable to prescribe it. Weird…


#8

If it’s not registered then yea you might not be able to get it. It’s odd that it’s not registered in the Netherlands, because my country is even much smaller and less developed than the Netherlands. I know in my country it was registered already in December, maybe earlier.

Edit: Went back and checked my emails, they told me in early August already that it was registered.


#9

I guess it’s the same as in Germany, that it will be on the market in the second quarter of this year. The only thing what worries me about Reagila is that it might cause insomnia because I already suffer from (sleep maintenance) insomnia… Do you have this side-effect?


#10

The first time I took Reagila I took 1,5 mg and I took it at night, could sleep only 4-5 hours. Switched to taking it in the mornings and was fine mostly, I do sleep about 2 hours less than I used to but before I was sleeping a bit too much. It is pretty activating though. Other than that I have no side-effects.


#11

how many hours sleep do you get? Also, on which med and dosage were you before this?


#12

I get about 9 hours at the moment. I am also on Ziprasidone which makes me sleepy. I am transitioning from being on risperidone as well, I was on 2,5(the the risperidone is getting switched with Reagila). I am not on a sleep med atm.


#13

OK. What exactly does Reagila do for your negative and cognitive symptoms?


#14

Cognitive - my attention is better, even reflexes are better, I know this because the scores in the FPS computer games I play have gone up without anything else changing. My mental endurance is better, can read a book for longer and comprehend better. Atm my memory is not as good but that I’m sure is because of risperidone withdrawal, before I started lowering it it was better than before getting on Reagila as well. I can articulate myself better.

Negative symptoms - better motivation, also the motivation feels natural, the same kind I had before getting ill, as opposed to the “synthetic” motivation of antidepressants and stimulants. Anhedonia is better too but that I don’t know how much of it is because of getting off risperdal, because it was only moderately better before I started lowering risperdal, now that I’ve lowered it it seems significantly better. I do remember the time after diagnosis and pre risperdal where my anhedonia wasn’t nearly as bad as after getting on it. I feel like being more social(that started 3 days ago when I bumped the dose up to 3mg).

So yea it helps me in all sorts of ways.


#15

I would go to the clinic study. Even if you get the placebo you will get paid. You always have the opportunity to buy it when the study is over.


#16

Sounds promising.


#17

@twinklestars or any other bright mind.
Can I have your thoughts on Raloxifene and schizophrenia?

I got accepted in the study btw! As a backup plan, in case I get the placebo and know for sure it’s just a sugar pill, I will quit the study prematurely and trial Raloxifene.


#18

Thanks for the extensive review!
Noticed any side-effects? Weight loss/gain, akatishia or something else besides sleep? (I don’t know if you work-out but all antipsychotics I tried affected my muscles, it made them weak and easily bruised.)
Also did it affect your mood?


#19

I don’t know about the possibilities as an AP but it seems promising for cognition. Things that affect hormones can be tricky long term… but let’s face it, so can everything else. So I am watching with interest.


#20

I have noticed weight loss but I’d attribute that to lowering of risperidone and not the Reagila, because I only started noticing it(and the decreased appetite) aftet the risperidone dose had been significantly lowered.

Maybe I was imagining it, but after the first dose I felt less restless and it felt like my muscles were more relaxed. Also I felt it after subsequent doses as well and after a while it kinda “blended” into my way of being, I think it just became my default state.

No akathisia for me, that was the only sideeffect I was really worried about because I had gotten it from several meds(including Abilify). I don’t work out atm, but I’m planning to start soon.

I quit my antidepressant(bupropion), which I had been on for many years, shortly after I got on Reagila, so its hard for me to say how much it helps my mood. I just feel like theres less to be depressed about because I’m getting my life back. I was not depressed much before Reagila either so not sure.

The lowering of risperidone is going not as fast as I would have liked. Looks like I’ll probably have to take 4.5 mg of Reagila to switch from 2.5mg of risperidone, because I’ve been on 3mg over a week and have only managed to lower 0.5 of risperdal total.