Baclofen taper

[[Fa...]]

I was actively tapering diazepam; however, I have decided to pause my diazepam taper in order to taper baclofen.  Looking back I had become tolerant to baclofen very quickly (within 2-3 months).  In fact, I was put on diazepam for my muscle issues that the baclofen was no longer solving.  Tolerance was not recognized by either of my medical providers - one of the provider's PAs even insisting that tolerance to baclofen was not possible.  I now know that is not true.

My concerns with the tolerance issue, lack of any perceived therapeutic value, the short half-life of 2-6 hours, and the associated need to dose frequently are my primary reasons for the decision to pause the diazepam taper and give tapering the baclofen a shot.  I'm also keeping in mind that suggested pharmacologic adjuncts for the treatment of baclofen withdrawal syndrome include diazepam - which I am currently dosing daily, and have been holding at 8mg for just over a month now.  Lastly, perhaps I am optimisticly hoping I will be giving my GABA-A receptors a 'break'.  

I had been taking three (3) 20mg tablets daily since late 2020 - morning, afternoon and evening.  I have chosen to initially remove one quarter of my afternoon 20mg tablet dose.  I will be taking approximately 15mg in the afternoon and bringing my total daily dose to 55mg.  I will re-evaluate in one week.  If all is well, I will proceed with removing one quarter from my morning 20mg tablet dose - bringing my total daily dose to 50mg.  I am hopeful I will be able to get down to 40mg via this route of quartering 20mg tablets.  At 40mg daily I can always switch to the 10mg tablets, and at 20mg daily I would be able to switch to the 5mg tablets if needed.

There is also a 5mg/5mL oral solution and a 25mg/5mL oral suspension available - though transporting liquid for my afternoon dose would be cumbersome.  In addition, I would prefer not switch my dosage form to avoid any potential bioavailability issues if not necessary.  However, I will obviously be letting my body, and any related symptoms, guide my decisions at each stage.  I have attached links of reference to this post.  As always, any advice/feedback/opinions are welcome.

Link to baclofen: https://www.ncbi.nlm.nih.gov/books/NBK526037/

Link to TruPharma baclofen tablet drug labels: https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=68aa591e-ea98-4438-9a4a-4f7e9ea2b285

Link to baclofen 5mg/5mL oral solution: https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=6cc2773b-cb64-48e9-a69b-e457b82cb2d4#:~:text=and muscular ...-,Baclofen Oral Solution is indicated for the treatment of spasticity,and other spinal cord diseases.

Link to baclofen 25mg/5mL oral suspension: https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=4585aafe-0af8-4786-a419-6a7e76671ca2

Link to article, baclofen therapeutics, toxicity, and withdrawal: A narrative review: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8182184/

[[Li...]]

Hello @[Fa...].

 

Tip of the hat for taking a deep dive into the medical/research literature on baclofen.  I wish more of our members would do this for each of the drugs they take — it would empower them to make more informed decisions about what might be causing their symptoms and what drugs to taper when.

My take is your rationale for tapering the baclofen is sound and you are already well-versed in how to taper centrally acting drugs.

On the outside chance that you have not already done so, might I suggest that you check the Adverse Reactions sections of the FDA drug label and the StatPearls paper to see if any of the ‘unpleasant’ symptoms you’re currently experiencing are listed?  If so, it’s possible that tapering the baclofen might have the salubrious effect of eliminating or at least diminishing one or more of those symptoms.  For example, I was surprised to learn that insomnia is an uncommon but known adverse effect of baclofen for some individuals.

 

[[Fa...]]

Thank you for your feedback and insight as always, @[Li...].  Unfortunately, I did not take a deep dive into the medical/research literature for baclofen, nor diazepam, prior to taking either medication.  I had never been prescribed any medications prior to 2018 (outside of brief courses of steroids and antibiotics), was uninformed and trusted my doctors.  The key issue of informed consent was absent, and I did not know enough to ask any pertinent questions.  

The good news is, as you stated, that I did research baclofen prior to discontinuation.  The literature on how to safely discontinue baclofen, and associated lived experience, is scant.  Reducing by 5-10mg per day is the most common suggested practice unless symptoms prevent this pace.  There is at least one member here who 'semi-documented' their baclofen discontinuation, and numerous on reddit - none of their experiences revealed that 5-10mg per day reductions was realistic.  However, I do not plan to drag this thing out unneccesarily.

I am on day 5 of my reduction to 55mg, from 60mg, and feel no different.  This is a good sign as even if my body metabolized the drug on the longer end of the half-life spectrum, at 6 hours, my body would have already eliminated the 5mg difference in dose.  I have a very fast metabolism in general though so doubt I am on the longer end of the spectrum.

With that said, I have indeed checked the documented potential adverse reactions with baclofen, and I appreciate you bringing this to attention.  I too found that insomnia to be an interesting adverse effect.  Though the onset of my insomnia began with the failed 3 week rapid taper of diazepam last September, I can now look back prior and see patterns of disrupted sleep and never feeling refreshed (or good).  I'm sure that the short half-life of baclofen is at play in regards to this adverse effect at nighttime (approx. 10 hours between my morning and evening dose).

I am not a medical professional; however, with a half-life of 2-6 hours, and a prescribed dosing regime of 3 times a day for 3 years, there is an obvious issue at hand - my 3 doses per day equate to an average dose every 8 hours.  This is unsettling to me, and the primary reason I want to rid myself of this medication sooner rather than later.  Even dosing this medication 4 times a day is problematic in my opinion.  For this reason, my belief is that oral administration of baclofen long-term should never be considered.  In addition to the issue of tolerance, when dosed multiple times per day, it has just a long enough half-life for the body to develop dependency, but short enough to prevent adequate patient dosing to avoid potential adverse effects.  Someone taking this medication once per day may not even develop dependency.  I will not be adding any additional daily doses however.  As I get to lower doses it will not be realistic, or beneficial, in my opinion, and I would have to trend back down to 3 or even 2 doses per day most likely.  

[[Fa...]]

I reduced to 55mg on 10/26.  After holding for 5 days, with no noticeable difference, I reduced to 50mg on 10/31.  I then reduced to 45mg on 11/5 after another 5 day hold period.  This is my 4th day holding at 45mg.  I plan to reduce by 5mg every 5-7 days until my body tells me otherwise.

[[Fa...]]

I reduced to 40mg yesterday after another 5 day hold at 45mg.  Again, no noticeable difference.  I still have poor quality sleep/insomnia; however, it does not appear that it is worsening with any reduction period.  It is encouraging that I have been able to reduce from 60mg to 40mg relatively quickly.  I hope the remaining 40mg to 0mg is uneventful.

Wouldn't it also be wonderful, on the off chance, if it has the salubrious effect of eliminating, or at least diminishing, my poor quality sleep/insomnia once off as @[Li...] mentioned.   

[[Li...]]

You are a mind reader @[Fa...].  I was just thinking about you and wondering how your baclofen taper was progressing.  It sounds like it is going well thus far.  Yes, it would indeed be wonderful if your sleep quality improved once you are off the drug — fingers crossed!

[[Fa...]]

I am currently down to 30mg.  I held at 35mg for 4 days.  I have an appointment in 6 days and plan to request prescription for 10mg tablets instead of 20mg tablets in case the need arises to reduce by 2.5mg instead of 5mg.  I am relieved that I have halved my daily dose in one month with little to no ill effects.  

[[Li...]]

Thank you for the good news update, @[Fa...].  Congratulations and well done on decreasing your baclofen dose by one-half with no ill effects!  Dare I ask if you’ve experienced the positive effect we hoped for (i.e. improved sleep)?

[[Fa...]]

Thanks, @[Li...]!  I indeed am experiencing a stretch of sleep which is perceived to be better than previous.  Not great - but better.  I’ll certainly take it, and I hope it continues to trend in the direction of ‘better’!

As you are more aware than most - who knows ‘what’s causing what’ in my situation.  I have been holding diazepam and mirtazapine doses steady for 2 months now while tapering baclofen.  I will certainly remain optimistic, and hopeful, that the removal of baclofen from my system results in overall improved sleep.  I’m not going to complain with ‘whatever is causing what’ currently! 

[[Fa...]]

I am now down to 20mg.  I am using a single 20mg tablet in one day - one quarter morning, one quarter afternoon and half evening.  I was unable to obtain the TruPharma 5mg tablets after asking 2 pharmacies.

They dispensed me the AdvaGen Pharma 5mg tablets instead.  These tablets are not scored but contain the same active, and inactive, ingredients as the TruPharma tablets.  I will proceed using these tablets from a different manufacturer and drop to 15mg per day tomorrow or Monday.

I would have liked to stick with the same manufacturer; however, I am not overly concerned switching to the 5mg AdvaGen tablets.  I have had little to no perceived difficulties reducing this medication by 5mg every 5 days, and I hope this continues down the home stretch.  The goal is 15 --> 10 --> 5 --> 0.  From 15mg to 10mg, I will dose 5mg morning and 5mg evening.  At 5mg, I plan to just dose in the evening.

[[Fa...]]

I am now over 60 hours baclofen free.  I decided to speed up the last few stages as I wasn't feeling much worse, if any, and have had no perceived issues reducing by 5mg every 5 days.  I held at 20mg four days, 15mg 3 days, 10mg 2 days, and a single dose of 5mg baclofen December 8th.

I cannot explain why I was able to discontinue baclofen easier than most experiences I've read.  I did proceed confidently and had a positive outlook.  Perhaps the 8mg diazepam on board provided 'air cover' or perhaps with the short half-life my physical dependence wasn't as strong - or perhaps a combination of both and 'everyone is different'.  Whatever the reason, hopefully if someone stumbles across this thread worried about discontinuing baclofen, it will provide hope.

Sleep onset has come more naturally and easier for me the last month.  After a few hours of perceived quality sleep, I still awaken and have broken, light sleep with many dreams the remainder of the night.  This and associated daytime fatigue are my most troubling symptoms.  I hope this continues to trend in a positive direction.