I find the thought of the amounts of medications I am supposed to take for my severe Raynauds with SSc rather sickening. Especially as we might not even be talking about a temporary tool to manage a disease, but a long-term one (possibly forever)!
Amongst others I have been taking Fluoxetine 20mg (basically Prozac!) since July 2017 to manage the condition.
Has anyone stopped taking Fluoxetine or any other anti-depresiva and can tell me about their experience?
Supposedly once you are taking this medicine (the only condition this treats according to the leaflet is depression; that silt is being used in some other diseases due to its vein-opening properties is not mentioned) your condition (depression) gets worse before it gets better. And yes, I did experience a few "blue days" during the first 6 weeks or so.
While now I feel rather balanced (although I never used or felt the need to use Anti-Depressiva before), the thought of stopping this medication naturally fills me with a certain amount of concern.
Would be happy to hear of any experiences.
Thank you. Hd
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hunkyd0ry
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I take Fluoxetine as well. Not for depression but for the fact that it dialates the blood vessels. Studies have shown it has this property. And to be honest I would rather take a hundred different tablets if it meant it was stabilising my condition. My advice is to keep taking it. Your Dr wouldn’t of put you on it if they didn’t think it would help.
I do not disregard this fact of doubt the knowledge of my rheumatologists. I do indeed feel in good hand with the very capable team at the Royal Free and I am utterly thankful for all they do for me and also to the fact that I am much more able to manage the symptoms of my condition.
And whilst I can't deny the fact that all medication has helped me a lot (the last time I woke up from nerve pain because some part of my fingertips dying off is thankfully several months ago before I was put on my meds and I haven't experienced that since).
But I do believe that while the specialists are doing their best to help us to manage our condition, it is US ourselves who have the closest touch with our bodies and - with the support of the specialist team of course - can try to play around with the medicines we take and their doses.
Since I had my 5 days of Iloprost infusions at the beginning of this year I have stopped taking Losartan for example. This is due not only to it's blood pressure lowering properties, but also the fact that exactly this property makes the idea of trying for a baby a big no-go situation as the side effects of Losartan can actually be harmful.
With adding one and loosing another medication it is obviously a little task now to find out any changes in my body reactions (both good and bad) which result from this change. But this is something that I have to pay attention to, because in this sense my specialist rheumatologist is only as smart as I am myself.
While I have crossed the 40's line already, I do not consider myself an old or aging person and it creeps the hell out of me to think that I will forever be walking around with a stash of viagra and prosac in my handbag for what might be another 30 or 40 years! (although the reaction of a friend made me laugh... "Oh, so you're constantly happy and horny then?" Hahaha!)
So while I am looking to test more in the fields of diet, exercise and homeopathic / natural remedies, I am more than happy to lower or eliminate the intake of certain medicines to see how this will affect my situation. If I find that my symptoms worsen to an unacceptable level, I can always go back to it, right?!
I am entirely thankful to what medicine and science have achieved to manage our conditions to even a few years ago. The generation before us would have had to just bear a bout of terrible but undefinable symptoms without the hope of much help for them.
But I also do not want to fall into the category of people who just hold their hands open to get whatever prescriptions and swallow everything I am given without asking some questions or making some inquiries.
Hi hunkydory, I read your post with interest. I also feel overwhelmed with the amount of medication I take, but, if you read my earlier post, it does manage to control my Ssc and Raynauds. As regards to the Fluoxetine, I take it for depression, ( I was diagnosed with depression before being diagnosed with Ssc & Raynauds.) Apart from a couple of times coming off anti depressants, ( I have been on them for 6 years,) on both occasions I foolishly waited until things got bad again before I went back on them. I am aware that my depression and Ssc and Raynauds, are only being controlled, but for me the alternative is far worse. You must do what you feel is right for you, perhaps writing down the pros and cons, may help.
As for the weather, the nights are drawing out, and amazingly we are nearly half way through February, it would be nice to see the sun and warmer weather, having said that I dont like the really hot weather, theres no pleasing me ha ha. I hope whatever decision you make you feel comfortable with it, smile and wave, smile and wave.
I take just 10 mg fluoxetine. It is a medication you should NOT stop suddenly whatever you are taking it for - check with your doctor!
Thank you all. Of course I will speak to my doc before I stop taking anything and won't go it alone!
The one drug I am absolutely certain that works for me is Sildenafil! But while varying the doses from 3 tablets per day (as first prescribed), then stopping it (due to the 6 week-course having ended - not good!), then starting again on 1 tablet per day (yes, it does help still!) to then finding that in the bitter cold period we had back in November that even upping it to 3 tablets per day again wasn't enough anymore.
According to the Dr. Ong who is the "big guy" at the Royal Free one can take up to 6 tablets per day! - Blimey!
I went up to 4 per day and managed on that, but started to have nosebleeds.
Since the Iloprost infusions I have reduced (slowly decreasing by 1 tablet at the time of course) down to 2 tablets per day again. But have (more by chance due to a forgotten pill) realized that 1 tablet per day will not be enough.
So that's also this kind of "playing around with the doses" I was referring to. If I would just listen to my doc I would still be on 3-4 tablets per day, but because we as the patients can test the most direct way which dose is right for us, we can adjust it in a way that we are taking the minimum of what is required to manage our condition, but the maximum of what is absolutely necessary!
- The latter not only for the sake of my body, but also because this stuff costs the NHS an awful lot of money, which as we all know they don't have.
But anyway... my question was really if anyone who was prescribed Fluoxetine (without having had this prescribed for depression) has actually stopped taking the drug and can tell me something about the effects this might have had on you. Has it affected your mood in a negative way to come off Fluoxetine? Would the doctor advise you to decrease the mg before you would stop completely?
I tried Gapanetin, Lyrica, Triptizol, Noritryptilene, Triptylene etc. etc. but my Rheumatologist recommend Fluoxetine in December 2016 last year, and now I have stopped all the former which made me feel like a zombie, and on Fluoxetine which does not make me walk around "hap, hap, happy".. It has really helped my hands and for the first time in my life my toenails are growing stronger! I also on blood pressure pills. So now been on Fluoxetine for a year and mentally and physically feel no different, but my hands are warm and although my feet still sort of "numbish", they no longer solid frozen. I do sometimes wonder if Viagra would go that extra mile to help remaining symptoms. Hope you get some relief. I avoided starting as my GP warned me it might have side affects, so although prescribed before Christmas I did not start until the mid-January, and really didn't notice any side affects.
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Hahaha!)
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