Please fuel my drug-seeking behaviour with DATA
June 12, 2023 11:15 AM Subscribe
This week, I have an appointment with my MS neurologist. I am 100% straight-up asking for stimulants (again) and I would be really grateful if someone could parse the data in this study to give me a fighting chance of actually getting some.
I cannot emphasise enough how much I need stimulants to fight fatigue and keep my job. I also cannot emphasise how much my otherwise beloved neurologist does not want to prescribe them to me because "they don't work." (Note that I am not in the US and the prescription of amphetamines for MS patients is not standard at all.)
Except I know they do work for me, because I am currently illegally taking 40mg of my husband's ADHD prescribed Ritalin XR three days a week to be able to function in my job. I probably won't tell him that.
Can someone read the data in that study for me and build a statistical argument for at least trying a stimulant? It is the study currently used to say stimulants "don't work" but I mean the data must show it worked for at least some group. On 40mg of XR I can do 6 hours of solid work before I have to go lie down and I can't be the only person with that outcome.
Sorry, I am actually, genuinely so tired and so desperate to be able to function and also to not get fired.
I cannot emphasise enough how much I need stimulants to fight fatigue and keep my job. I also cannot emphasise how much my otherwise beloved neurologist does not want to prescribe them to me because "they don't work." (Note that I am not in the US and the prescription of amphetamines for MS patients is not standard at all.)
Except I know they do work for me, because I am currently illegally taking 40mg of my husband's ADHD prescribed Ritalin XR three days a week to be able to function in my job. I probably won't tell him that.
Can someone read the data in that study for me and build a statistical argument for at least trying a stimulant? It is the study currently used to say stimulants "don't work" but I mean the data must show it worked for at least some group. On 40mg of XR I can do 6 hours of solid work before I have to go lie down and I can't be the only person with that outcome.
Sorry, I am actually, genuinely so tired and so desperate to be able to function and also to not get fired.
Except I know they do work for me, because I am currently illegally taking 40mg of my husband's ADHD prescribed Ritalin XR three days a week to be able to function in my job. I probably won't tell him that.
I would TOTALLY tell him that.
posted by yes I said yes I will Yes at 11:41 AM on June 12, 2023 [14 favorites]
I would TOTALLY tell him that.
posted by yes I said yes I will Yes at 11:41 AM on June 12, 2023 [14 favorites]
I would phrase it as “I tried this and then did this and since then I’ve been taking it 3 days a week. When I take it I notice these benefits. I would like to be taking it x days per week. I would like you to trial me with it to see how it works.”
I would only not do that if you know the legal exposure could be bad for trading meds in your country. In that case I would do the above, but say it’s about your friend with MS.
posted by creiszhanson at 11:54 AM on June 12, 2023 [7 favorites]
I would only not do that if you know the legal exposure could be bad for trading meds in your country. In that case I would do the above, but say it’s about your friend with MS.
posted by creiszhanson at 11:54 AM on June 12, 2023 [7 favorites]
This is weird. The study also showed no efficacy for Modafinil (Provigil). I have MS, and have been taking Modafinil daily for over 20 years, and I credit it with pretty much saving my life. I thought MS fatigue and brain fog was an on-label use for the drug. Both my MS doctor and my GP have been very supportive of my taking it.
Would it help to show your doctor that Ritalin (and also Provigil) are are listed by the National Multiple Sclerosis Society as being used off-label to treat MS-related fatigue?
posted by Winnie the Proust at 12:01 PM on June 12, 2023 [21 favorites]
Would it help to show your doctor that Ritalin (and also Provigil) are are listed by the National Multiple Sclerosis Society as being used off-label to treat MS-related fatigue?
posted by Winnie the Proust at 12:01 PM on June 12, 2023 [21 favorites]
I think the gist of the above is that an appeal to data may not be your best avenue -- if it were, your neurologist would not have cited ineffectiveness in the first instance. I agree that an "I've tried this regimen [under some nebulous circumstances] and it worked with no apparent adverse effects" is the ideal approach if you can take it without ill consequence. I would add--with the caveat that I am a US-based patient with different neuro issues--that "I need to try aggressive measures because [symptom] is threatening my employment" has been extremely effective for me personally, though that may just be because of our USian hellscape.
Wishing you very good luck.
posted by LadyInWaiting at 12:45 PM on June 12, 2023 [3 favorites]
Wishing you very good luck.
posted by LadyInWaiting at 12:45 PM on June 12, 2023 [3 favorites]
Best answer: The study does show that on average, none of the drugs work. That's really the message you should take home.
However, in the results table, you could point to the confidence intervals indicating that there were some responders in the data set. Since we don't fully understand the mechanisms whereby these drugs treat fatigue, we can't reliably predict who will respond well (though again, on average, most people don't respond). The best you can do is hope to be one of them.
posted by Dashy at 12:50 PM on June 12, 2023 [1 favorite]
However, in the results table, you could point to the confidence intervals indicating that there were some responders in the data set. Since we don't fully understand the mechanisms whereby these drugs treat fatigue, we can't reliably predict who will respond well (though again, on average, most people don't respond). The best you can do is hope to be one of them.
posted by Dashy at 12:50 PM on June 12, 2023 [1 favorite]
My wife uses the same to combat her fatigue, although she tries to avoid them every day but always on days when there’s something she needs to get done.
They are not prescribed for MS though (all those drugs just make it worse). They prescribed by her psychologist for the adhd. Can you go about it this way instead? Her MS specialist has nothing to do with them
posted by tillsbury at 1:06 PM on June 12, 2023 [3 favorites]
They are not prescribed for MS though (all those drugs just make it worse). They prescribed by her psychologist for the adhd. Can you go about it this way instead? Her MS specialist has nothing to do with them
posted by tillsbury at 1:06 PM on June 12, 2023 [3 favorites]
Best answer: So, I read the study, and have some thoughts. There is a paragraph on a post-hoc analysis they did, which did find some efficacy. When they split out results by patients’ baseline levels of daytime sleepiness, they found that those with higher baseline sleepiness did see a significant improvement when taking modafanil or methylphenidate. If daytime sleepiness is a symptom you have, this may be impactful to your doctor.
In a post hoc analysis of heterogeneity of treatment effect, there was an interaction between the baseline ESS score and treatment effect on the primary fatigue outcome (p-value of the interaction test=0.024). More than 50% of patients in the efficacy dataset had excessive daytime sleepiness (ESS score>10) at baseline. Among those, the estimated means of MFIS total scores for modafinil and methylphenidate were 4.1 points lower than the placebo (95%CI: −8.0, −0.3, and −7.9, −0.2, respectively) (Figure S3, Supplement page 9, and Table S4, Supplement page 14). In patients with no excessive daytime sleepiness at baseline (ESS score ≤10), the estimated means of MFIS total scores for amantadine, modafinil, and methylphenidate were not statistically significantly different from the placebo. The results of other post hoc exploratory analyses are presented in Appendix page 6.
Also, the results reporting for this study seems a bit wonky to me. They don’t report p-values for their subgroup results, which is making it hard for me to interpret (without knowing more about the questionnaires they used). I also find it odd that they report raw adverse event rates, without specifying if they are related. The 3 significant AES they report were all unrelated, yet they report them in the abstract’s Findings section without that proviso. For context, any negative event or symptom that occurs in a trial is an AE, such as breaking a bone due to being in a car accident. They are assessed on severity and relatedness, neither of which are reported with the results. So there’s a lot of stuff reported, without knowing how severe they were or whether the doctors thought it was related to the treatment. It may be worth looking at papers citing this one, or the works it cites, for more useful studies.
Finally, there can be a big difference between what is detectable in a clinical trial versus what is clinically impactful to a single patient. Trials work in statistics, trying to predict how large numbers of people will respond. You already know how you respond to the treatment. If your doctor isn’t receptive to that data (which is far more relevant to you than statistics!) you should try to get the treatment via another doctor. A psychiatrist who specializes in treating patients with chronic illness may be more receptive to your concerns and goals.
posted by bluloo at 2:34 PM on June 12, 2023 [3 favorites]
In a post hoc analysis of heterogeneity of treatment effect, there was an interaction between the baseline ESS score and treatment effect on the primary fatigue outcome (p-value of the interaction test=0.024). More than 50% of patients in the efficacy dataset had excessive daytime sleepiness (ESS score>10) at baseline. Among those, the estimated means of MFIS total scores for modafinil and methylphenidate were 4.1 points lower than the placebo (95%CI: −8.0, −0.3, and −7.9, −0.2, respectively) (Figure S3, Supplement page 9, and Table S4, Supplement page 14). In patients with no excessive daytime sleepiness at baseline (ESS score ≤10), the estimated means of MFIS total scores for amantadine, modafinil, and methylphenidate were not statistically significantly different from the placebo. The results of other post hoc exploratory analyses are presented in Appendix page 6.
Also, the results reporting for this study seems a bit wonky to me. They don’t report p-values for their subgroup results, which is making it hard for me to interpret (without knowing more about the questionnaires they used). I also find it odd that they report raw adverse event rates, without specifying if they are related. The 3 significant AES they report were all unrelated, yet they report them in the abstract’s Findings section without that proviso. For context, any negative event or symptom that occurs in a trial is an AE, such as breaking a bone due to being in a car accident. They are assessed on severity and relatedness, neither of which are reported with the results. So there’s a lot of stuff reported, without knowing how severe they were or whether the doctors thought it was related to the treatment. It may be worth looking at papers citing this one, or the works it cites, for more useful studies.
Finally, there can be a big difference between what is detectable in a clinical trial versus what is clinically impactful to a single patient. Trials work in statistics, trying to predict how large numbers of people will respond. You already know how you respond to the treatment. If your doctor isn’t receptive to that data (which is far more relevant to you than statistics!) you should try to get the treatment via another doctor. A psychiatrist who specializes in treating patients with chronic illness may be more receptive to your concerns and goals.
posted by bluloo at 2:34 PM on June 12, 2023 [3 favorites]
Best answer: To follow up on my previous post, this is a good systematic review on a number of studies on fatigue in MS patients: Daytime sleepiness versus fatigue in patients with multiple sclerosis: A systematic review on the Epworth sleepiness scale as an assessment tool.
It has some good explanation of the distinction between fatigue and sleepiness, which may provide guidance for your conversations with doctors. It also discusses co-morbid sleep disorders in MS patients that can contribute to fatigue and sleepiness.
posted by bluloo at 4:10 PM on June 12, 2023
It has some good explanation of the distinction between fatigue and sleepiness, which may provide guidance for your conversations with doctors. It also discusses co-morbid sleep disorders in MS patients that can contribute to fatigue and sleepiness.
posted by bluloo at 4:10 PM on June 12, 2023
The study is dominated by patients with relapsing-remitting MS. If you have a different type of MS, you could point that out to your doctor, with the argument that the study results aren't relevant to you. That still wouldn't be an argument in favor of Ritalin, just a neutralization of his argument against it
posted by matildatakesovertheworld at 4:37 PM on June 12, 2023 [1 favorite]
posted by matildatakesovertheworld at 4:37 PM on June 12, 2023 [1 favorite]
Best answer: If your neurologist isn't supportive, it might be a lower lift to just try and get diagnosed with ADHD and get the medication you need that way.
posted by potrzebie at 5:34 PM on June 12, 2023 [9 favorites]
posted by potrzebie at 5:34 PM on June 12, 2023 [9 favorites]
If your doctor has already said no, I think you'd be better off putting the argument for stimulants aside and instead argue for a solution - whether that be stimulants, other medication changes, referrals to other specialists, behavioral changes etc. Lay out how the fatigue is putting you at risk of unemployment in excruciating detail and ask for a plan to get it under control. The article bluloo links makes a good point that there may be other factors worsening your fatigue, and you'd be doing yourself a disservice by having to rely on stimulants to treat the symptom instead of identifying and treating any other underlying conditions.
This appointment also sounds like a good opportunity to explore medical leave so you don't have to worry about losing your job while you work on this with your doctor.
posted by fox problems at 6:46 PM on June 12, 2023 [3 favorites]
This appointment also sounds like a good opportunity to explore medical leave so you don't have to worry about losing your job while you work on this with your doctor.
posted by fox problems at 6:46 PM on June 12, 2023 [3 favorites]
Best answer: I would second what bluloo said re: sleepiness vs fatigue.
The other main point is that the section "Evidence before this study" outlines a number of other studies. A lot of them found benefit from the stimulants. The study you linked looks to be bigger and better designed, but it still doesn't cover every possible type of patient, disease presentation, etc.
There is enough evidence in those other studies to think that there might be some benefit, at least to some patients.
posted by flug at 11:39 PM on June 12, 2023
The other main point is that the section "Evidence before this study" outlines a number of other studies. A lot of them found benefit from the stimulants. The study you linked looks to be bigger and better designed, but it still doesn't cover every possible type of patient, disease presentation, etc.
There is enough evidence in those other studies to think that there might be some benefit, at least to some patients.
posted by flug at 11:39 PM on June 12, 2023
Response by poster: Thanks all. I'm sorry it took me a while to come back and respond; shockingly, after posting this, I fell asleep.
Telling my neuro about my husband's ADHD meds is a no-go. Please trust me when I say I have done a very lengthy risk/benefit analysis. My husband and I share the same GP and my neurologist is in fact also our GP's neurologist. If the neuro discloses to the GP, she will 100% cut off his prescription, which she is only reluctantly writing as a bridging prescription while he sits on the waiting list for a psych referral, and I am not risking that for him.
I have already done the tests for every other underlying issue, per my neurologist. I do have RRMS (although all MS starts out as RR, you can only diagnose other types over time.)
I am really, really grateful for the analysis of this study and I'm going to feel better prepared for my Thursday conversation. If that fails, I will get a private UK clinic appointment for ADHD screening (I totally have ADHD I just have only been able to get help for one ADHD household member at a time) so the stretch on that will be negative bupkis. I may need to get meds filled in the UK too but that is actually doable.
posted by DarlingBri at 4:43 AM on June 13, 2023 [6 favorites]
Telling my neuro about my husband's ADHD meds is a no-go. Please trust me when I say I have done a very lengthy risk/benefit analysis. My husband and I share the same GP and my neurologist is in fact also our GP's neurologist. If the neuro discloses to the GP, she will 100% cut off his prescription, which she is only reluctantly writing as a bridging prescription while he sits on the waiting list for a psych referral, and I am not risking that for him.
I have already done the tests for every other underlying issue, per my neurologist. I do have RRMS (although all MS starts out as RR, you can only diagnose other types over time.)
I am really, really grateful for the analysis of this study and I'm going to feel better prepared for my Thursday conversation. If that fails, I will get a private UK clinic appointment for ADHD screening (I totally have ADHD I just have only been able to get help for one ADHD household member at a time) so the stretch on that will be negative bupkis. I may need to get meds filled in the UK too but that is actually doable.
posted by DarlingBri at 4:43 AM on June 13, 2023 [6 favorites]
Response by poster: Success! At least partial success. I left with a prescription for modafinil. He told me he can't prescribe methylphenidate because it's outside his scope of practice , but I am going to think happy, awake thoughts about Provigil.
Thanks especially to bluloo, who I quoted pretty much verbatim on the ad-hoc data.
posted by DarlingBri at 5:46 AM on June 15, 2023 [5 favorites]
Thanks especially to bluloo, who I quoted pretty much verbatim on the ad-hoc data.
posted by DarlingBri at 5:46 AM on June 15, 2023 [5 favorites]
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That's an exploratory analysis after the primary analysis showed no difference, which most statisticians would have told them not have even done, and is probably a chance effect, but that's the only analysis in that whole article that shows any benefit for Ritalin at all.
posted by shadygrove at 11:37 AM on June 12, 2023 [4 favorites]