Hello all, as per last year with TRT, I have compiled a list of user accounts of their experiences with Bupropion/Wellbutrin.
It pains me to see so many members hanging on by their last thread, clinging for hope. I don’t want anybody else to take their own life and I would prefer members who attempt to try treatments to at least be able to see other user’s experiences in an easy to read manner rather than relying on people’s recall of other member’s experiences when asking about a potential treatment.
The work the moderators are doing is fantastic for the community, and we should all stand behind them, complete the survey and be prepared to donate to future research efforts. Where I perhaps stand apart is my desire to be able to see sufferers trying the safest possible treatments rather than being given something life-threatening by their uninformed doctors.
I’m of the conviction that users need solutions now, even if they’re stopgap and perhaps only able to provide marginal benefits. As I’ve communicated previously, aiming for a remedy to epigenetic modifications should be our ultimate end-goal, but I’m not sure how many more years people are truly able to wait.
Please find attached a list of users with links to their profiles and their experiences with this atypical antidepressant. I tried adding notes to users who provided specific detail to their experience, but otherwise I did my best at trying to get a sense of whether it improved their symptoms, made them worse, or made no difference at all.
Percentages are at the bottom of the spreadsheet. Many of these users are no longer active on the forum, whilst interestingly, of the moderators who’ve tried the drug, over 65% reported adverse effects, compared to around 13% of the general user base.
69 users tried it.
66% reported receiving benefits of varying degrees.
10% reported no effect one way or the other.
Use this data to help you make informed decisions if you do try using a drug to make things a little more bearable for yourself but remember that the risk is ultimately yours to bear if things don’t turn out well for you.
Also, if you appear on this list and deem my interpretation of your experience to be incorrect, or the account of another member, please let me know and I’ll update the spreadsheet accordingly.
Unfortunately I can confirm bupropion 300mg every day doesn’t seem to give me any benefits. It’s important to note, for everyone who still has to try bupropion, you can only evaluate the effects after about 4 weeks of stable use. Start with 150mg once a day for 2-4 weeks. Then switch to 300mg once a day and wait for 4 weeks.
Side effects for me are (I’m still on 300mg): Serious anorexia (meaning no desire to eat, especially sweet stuff and coffee) and dry mouth.
Interesting, sorry it’s not working for you. I actually feel it has had an affect on my mood, particularly during my crashes, where I no longer feel suicidal, but more optimistic. My appetite, if anything has increased during the span I’ve been on it.
Even sexually, I think it’s done something for my libido (cannot be certain of course as I haven’t tested myself off of it).
Overall, I’m not planning to get off it anytime soon. But I am pretty sure it has had positive effects on me.
Just my case with it.
This is a pretty cool data set you’ve got here. I was just going through it and noticed that my experience was marked as positive, but I’m not sure if that is correct. I had been taking Wellbutrin since before I took Finasteride (since I had some minor attention issues and my doctor and I thought it was better to use that than stimulants) and continued taking it for about a year and a half after my initial crash. Not sure whether it helped or not, but wanted to share that with you.
I still think that in most cases, the best thing to do is to wait and let time do it’s thing, but obviously that’s not always an option. I wish you the best of luck with whatever you choose to do.
I did a similar analysis for my own purposes a couple of years ago. However, I looked at both PSSD and PFS experiences and stopped after some time without accounting for all PFS cases, because the results were not encouraging. I also think that Axolotl has done the same.
Based on my own analysis I think it is a bit misleading to cluster just by positive/mixed/negative without looking at different timeframes of treatment with Wellbutrin, degree of positive effects and the duration for which PFS has persisted.
I also looked at the subsequent posting history of people who initially reported positive things to deduce lasting effects and also categorized into different degrees of “positive”. The overwhelming majority either reported neglectable to mildly positive effects that were short-lived themselves or it become apparent for their subsequent posting history that Wellbutrin did not have a lasting (material) effect. To some extent this is reflected in column H of the file, although follow-ups are clearly not always considered. Christ74, for example, initially reported full reversal of symptoms (as mentioned in the file), but also repeatedly reported treatment losing some effect afterwards (although his overall judgement is still positive).
My own overall conclusion at that time was that based on degree and persistence of its effects Wellbutrin did nothing of note for the overwhelming majority of people as positive effects were most often mild and short-lived. I only found two members with a long history of persistent side effects from medication (one from the PSSD community, and Chris74) - to rule out natural recoveries -, with significant positive effects that lasted for more than a few days/weeks. For example, the files lists the user @Boston332 as a “positive”, when my file has a quote of him saying “I’ve been on Wellbutrin for a few months. It might help me cope a bit better but has done nothing for my libido.” That’s a very weak positive if at all.
Despite my criticism, I think this is a good effort and generally the right way to assess treatment experiences by patients. To further improve on it I think it would be good to open the file to selected users and add more dimensions with a drop down field (e.g. slightly positive/positive/very positive as well as temporary/sustainable/unknown), so that we can add even more data. I also have a whole stack of PSSD experiences that I can add.
I think the dataset isn’t particularly cool, but rather useful for the following reasons:
Many new sufferers are told that the condition is untreatable.
They are told that any attempt at treatment bears a very substantial risk.
They are told to wait, hope to improve in time, and fill our the survey and post their heartbreaking story to the internet for all to see. They are told to sit tight and wait for research to progress, something they have no agency over, aside from adding themselves to less than half a percent of data gathered by the survey.
The very nature of the realisation of of 1 and 2 is enough to draw even the most sane of people to despair. Number 3 may give them a sense of purpose and perhaps direction, but it would be hard for anybody but the most optimistic person to really feel their contribution will ‘push things over the edge’ to make ground. The plodding first response to a new user’s heartfelt pleas for hope and help is the plodding, ‘Do the survey and wait.’ They cry out for help in their own individual ways but the response is the same as all those who have come before them - ‘do the survey and wait’.
This dataset shows a few things which aren’t made clear to sufferers new and old.
Wellbutrin/Bupropion seems to only have a negative impact on a little more than 10% of users. So there’s a 80-90% chance that you won’t feel worse after having taken it. And amongst those that DO feel worse, only very few of that percentage have lasting impairment to their baseline after cessation.
More than 60% have reported mild to substantial improvements to their condition by taking it. Sometimes the effects are indeed short-lived, but many times they seem to be ongoing. But even if the effects only last for a few months, a few weeks or even a few days, it in of itself can give people confidence that there are biochemical ways of relieving this nightmarishly complex condition, albeit temporarily. It shows that they aren’t completely doomed.
It shows that the rest of the people either experience no positive or negative effect, or some sides improve whilst others don’t (usually the sexual ones are the most stubborn, but crippling depression can often be relieved to some extent).
I’d like to see your analysis. I find this data rather encouraging. An efficacy of 60%, 50% or even 30% is something encouraging in the stubborn world of PFS.
Naturally we don’t know with many of the users. Often they just disappeared. I tried my best tracing their posts to see if they’d later remark that they discontinued treatment or that they got worse. I don’t know if I captured every user’s accounts accurately but I tried to.
Perhaps it’s worth spending some time re-evaluating your prior assessment. It seems to be that many of the users continued to take the drug and disappeared, or never mentioned that the stopped taking it. The fact that users report even mild benefits is something heartening and shouldn’t be dismissed in my opinion. I wouldn’t be surprised if efficacy rates even match those of the general population treating MDD, but I don’t have figures to back that claim up.
If you consider libido to be the defining attribute of PFS, then sure. But many on here are struggling to cope. Many are drawn to taking their own lives. I don’t see how a reported ‘improvement in ability to cope’ should be discounted as being a positive, as you claim.
What would really increase the power of this dataset, and I’ve brought it up in the past, is to correlate the survey responses with their responses to treatments such as the one discussed here. Thereby we could look for correlates between symptoms and treatment efficacy. When I’ve mentioned this prior, I was initially told that it cannot be done because it’s ‘too complicated’, and then I was told a little later ‘it infringes on user privacy’. I’m not pretending that there aren’t obstacles to this form of analysis, but I hope that the community can see its potential worth.
In all, I think this dataset, although not perfect, (and your criticisms I largely agree with) shows that there may well be treatments worth recommending to sufferers rather than adopting the ‘it’s entirely untreatable at the moment and if you try you’ll probably make yourself worse’ response.
What the community needs to do is perform a statistically-sound risk-analysis on treatments such as Wellbutrin, TRT, in an as objective a manner as possible. It won’t be perfect, but I feel it’s our obligation to do so.
I understand the hesitancy to accept that PFS is treatable, in some instances at least, and the implications it has with regards to community cohesion, research initiatives and general outside opinion of sufferers.
Given what the Baylor Study has shown us, with sufferers having thousands of dysregulated genes, it’s a near miracle that anything works for anybody, and we should be sussing out all of the connections we possibly can.
But as far as I see, if it could save even one life it would be worth all the effort and risk.
This is not supported by the data you provide. You have highlighted users whose effects were temporary, but make not mention for the others whether their effects were lasting or whether this information was not known. You cannot just deduce that people not reporting temporary effects have ongoing effects.
I think that’s way too much spin. Most of these “positive” answers reflect very mild benefits (if any) that often last only briefly. You’ll probably have similar results with any “treatment” that people “believe” in, just by the virtue of placebo effect.
I see no reason why. The data is in line with what I found and shows very, very few users with definitive lasting positive effects that make a difference.
The user said it “might” (i.e. “I am not entirely sure”) have helped him “a bit”. Is it a positive statement? Yes - technically. Is it meaningful? As I said, that’s as weak as it gets as a “positive”.
Looking at a couple more of your “positive” entries: @iwontgiveup: Was also on T3 (confounding variable) and reported improvements after just a few days, when Wellbutrin is normally expected to take weeks to work. @numbduck: Started Wellbutrin just a few months after having PFS (confounding variable) @visionquest99: You note him as a positive, when he says the following: “I was prescribed wellbutrin but discontinued very early on due to insomnia. i do not believe this helped me though i did feel less anxious for those few days.” @propecia-victim-FL While overall positive, he also reported issues with sleep. @jairus: Reports prior use of Wellbutrin with only temporary effects. That is not noted. Also, your files has him in there twice. @sean423: Just a few months into PFS and also water fasting at the time of Wellbutrin treatment (confounding variables) @wdderbell2: Reports that the effects tapered off. This is not noted in your file. @hrfinasteride: Started treatment shortly after crash, also took gabapentin and took part in therapy. (confounding variables) @bibfortuna: Started treatment within a few months of PFS (confounding variable).
These are quite a few question marks. Overall, I don’t think the dataset warrants any new conclusions. It shows barely any patients with significant and lasting positive effects, while most report no or only very mild and very temporary effects that can be barely distinguished from Placebo effect. Many who report positive effects were early in PFS (when many people report improvement with or without treatment) or also took other things. That’s pretty much the same conclusion most of us come to with regard to any other treatment approaches as well.
I guess if you really want to take a positive away from this analysis, it’s that the chance to suffer from lasting negative effects is low as well and that there are a few seemingly definitive positive experiences and a few potential positive experiences. On average, trying Wellbutrin will likely not result in any meaningful (duration, degree) positive or negative effects.
Either way, it is helpful to approach conclusions based on data. I’d encourage anyone who took Wellbutrin/Bupropion/etc. to report/update their experience (regardless of whether they were negative or positive) to the benefit of everyone’s decision making. The more data we have, the better.
For me, personally, I decided that the probability of lasting and meaningful positive effects from Wellbutrin is too low. Others may be less risk adverse or more desperate.
Nobody is denying that there are things that could have a positive effect on your symptoms temporarily. If you’re looking for a drug/supplement that can reliably help a notable proportion of people with their symptoms in anything other than the short term (/acutely), then you’re not going to find much. That’s just the reality of the situation, and it is not easy to come to terms with. It’s something even I haven’t fully accepted 4 years on.
I’m not sure I agree with you there. There is plenty of people who gain long term positive effects from different kind of treatment / supplements.
But I also see people who act out of despair, either trying everything there is to try. Or they try to change to much, to fast.
There’s no treatment that will work for everyone sadly, so you (or your doctor) has to assess your symptoms and theorize according to the data we currently have on different kind of treatments what could benefit just you. If that makes any sense.
I for once had great success with Creatine so far, and I’ve used it for some months now. It’s not the cure for PFS, but for me it offsets some of my symptoms.
I decided to use Creatine after assessing my blood work. Basically I had high LH, low SHBG and mid range T.
Taking all those parameters into account my conclusions was that my body wanted more androgens.
When we try to change our body’s homeostasis, it’s important to take it slow. If you rush into things, it’s likely to make you feel like shit. The body doesn’t want to adapt to new things because it takes energy, and the body is dead set on saving energy even if it’s not very productive.
Take someone who is bedbound, that person will lose muscle in almost an instant. This is BAD for your health, but the body doesn’t care. It just want to save energy.
Many animals doesn’t share this trait with us, they simply will not lose muscle even if they never move/excersie. But their problem is that they are not as adaptable when food is scarce etc.
I don’t think so. I have taken things that have offered me relief acutely (which has been helpful), but they are limited in what they can do.
This is the problem. The data that we have doesn’t give us enough information to come up with a treatment. We don’t much about this disease. My own experience with things that I have taken has been different based on what point in time I have taken it.
Let me chime in and say that Wellbutrin XL worked wonders for me as long as my T levels are good. When I came off Trt, it’s effects took a clear nose dive and were probably more negative than positive.
So if your T levels are GOOD (not just “in range”), it’s definitely worth a try for energy/motivation, and even libido. For me when I was at my worst/wit’s end, it was literally the difference between being physically disabled (from the fatigue) and very decently functional.
Actually, Wellbutrin increases dopamine and norepinephrine action which generally leads to higher motivation and “impulses.” And that was definitely the effect it had on me…when my T levels were good, things were great. However, when Trt was discontinued and my T levels dropped off, all that remained was terrible anxiety which was the main reason I stopped it.
Did you first get on TRT (any effects on its own?) and later on Wellbutrin, which then improved your condition? And when you went off TRT (why?), you felt worse (anxiety), but improved once you went off Wellbutrin?
Just trying to get an idea on the time line here to distinguish between the effects of TRT and Wellbutrin, respectively.