69 Comments
Oct 8Liked by Gavin Giovannoni

I am literally currently reducing my pregab/bac/Amitryptaline due to the terrible brain fog, I am completely outside of my life and have only recently realised that I could be living if I could be more present. Plus the pharmacist says drugs don’t generally work for nerve pain! This is a national scandal, why are we being prescribed meds that won’t work and will only cause adverse effects!

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It is horses for courses. Some pwMS tolerate these medications very well without side effects. I am not saying they don't work. All I am saying is be aware of adverse side effects and drug interactions.

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Oct 8Liked by Gavin Giovannoni

it is what my pain doctor told me he wouldn't prescribe me said they were useless. that was about 12 years ago.

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Oct 8Liked by Gavin Giovannoni

when i was bad i saw a pain med doctor, he said to me, I am not prescribing you anything, as to be honest the only things i can prescribe for you are designed to wipe you out and keep you quiet and your more likely to have an accident. oh i was kind of shocked to be honest. BUT i did try a couple baclofen made me dizzy and horrible 2nd night i fell getting to the commode as i felt so dizzy, gabapentin i felt horrible didn't like it at all and amitriptyline no thanks, so well after years 2000 i take 4mg of diazepam at night, and that's it. i can get up safely, I can think straight in fact my MS nurse is amazed for my age how screwed on i am at 73.

Yes i am in pain all the time, spasticity first thing is so bad i can barely stand up, the burning in legs etc sometimes makes me want to scream, but what i do is go online occupy my brain, take my mind off things, i try and walk a little each day in my bungalow i wont use my wheelchair in the house only outside as i cant walk but a few steps, I have PPMS. OH I EVEN tried SATIVEX definite no no lol. my neurologist understands and said some people are just sensitive to these drugs, so he respects my choices.

i have friends with MS who take all kinds of drugs and some have no idea what day it is, and are constantly falling. NO THANKS.

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Oct 8Liked by Gavin Giovannoni

Very interesting approx 30 years ago I was poo pooed by my then Consultant about these symptoms you describe. I'm sorry that your injury led you to taking said drugs together but I've said all along Neurologists need to take more notice of their patients findings when taking drugs they are after all first hand on what these drugs do when taken with certain other drugs. Over the years although having taken numerous DMDs and?STATII Trial (although had to come out of Trial when diagnosed with Rheumatoid Arthritis as drugs for RA would interfere with Trial drug/placebo findings) I now have SPMS RA life is difficult and fear going forward any such treatments for SPMS will not be made available for patients who have had SPMS for many years but Neurologists need to stop saying you need to go away and enjoy your life there speaks a person who has absolutely no idea of how disease affects daily life, basically putting you on the scrap heap with Reviews becoming 3 years + or not at all this is not good practice at all but seems to be the norm now sadly. #imonlythepatient

MS diag 1996

RA diag 2021

Rheumatology are way more proactive than Neurology in my experience

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Oct 8Liked by Gavin Giovannoni

I left the English NHS a year ago . Am now in Scotland. I was on 14 different drugs plus a dmt . I’m now in Scotland. I first heard of polypharmacy a few months ago in my neurologist review.

I’m on baclofen , gabapentin , clonazepam , co-codamol and sertraline - I changed from amatriptiline when I told my go I wanted to come off after intense sleepiness and fuzzy brain .

Honestly - no wonder the NHS is starving of funds - so many drugs ! And when more symptoms come up - more drugs - never stopping one - just adding another !

I’m reducing, vaclofen,clonazepam and have unbelievably managed to stop co- vodamol after over 20 years on the stuff ! I feel years younger !

Thanks for this - your articles always seem to hit the spot - I devour the info ! I’m determined to be as well as I can and unfortunately that doesn’t mean just doing what the GP or doctor says - be informed !

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Oct 8Liked by Gavin Giovannoni

Hi. I have been on Zomorph, Amitriptyline and Gabapentin for more than 10 years now. I had Cervical Myelopathy and required surgery but due to the long time it took them to diagnose the problem, I have permanent nerve damage.

Initially until we got the dosages right I was very impaired but this eased with time. I've managed to reduce the amount of Gabapentin I take but the nerve pain I experience if we try to stop the drugs makes life unbearable. I suffer from cognitive impairment in that my short term memory is bad and when I'm tired or unwell I stammer and can't find words but I'm not drowsy now and my Neurologist gave me permission to drive as long as I'm sensible and don't do it when impaired.

I'd love to come off the drugs but is life crippled with nerve pain preferable? I have a decent quality of life now, which I'm very grateful for.

Thanks for reading.

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Oct 8Liked by Gavin Giovannoni

Hello- I get it..Quality of life!! It’s a balancing act, I think. Best to you.

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Oct 8Liked by Gavin Giovannoni

when i was bad i saw a pain med doctor, he said to me, I am not prescribing you anything, as to be honest the only things i can prescribe for you are designed to wipe you out and keep you quiet and your more likely to have an accident. oh i was kind of shocked to be honest. BUT i did try a couple baclofen made me dizzy and horrible 2nd night i fell getting to the commode as i felt so dizzy, gabapentin i felt horrible didn't like it at all and amitriptyline no thanks, so well after years 2000 i take 4mg of diazepam at night, and that's it. i can get up safely, I can think straight in fact my MS nurse is amazed for my age how screwed on i am at 73.

Yes i am in pain all the time, spasticity first thing is so bad i can barely stand up, the burning in legs etc sometimes makes me want to scream, but what i do is go online occupy my brain, take my mind off things, i try and walk a little each day in my bungalow i wont use my wheelchair in the house only outside as i cant walk but a few steps, I have PPMS. OH I EVEN tried SATIVEX definite no no lol. my neurologist understands and said some people are just sensitive to these drugs, so he respects my choices.

i have friends with MS who take all kinds of drugs and some have no idea what day it is, and are constantly falling. NO THANKS.

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Oct 8Liked by Gavin Giovannoni

Ah yes pregabalin/Lyrics I took it for 6 years on a bare minimum dose to help with leg pain and spasms. I then developed a very severe reaction to UVB which was ascribed to Fingolimod. After coming off Fingolimod I still had it.

Turns out to be a side effect of Pregabalin after investigation by a specialist team in Photobiology who hunted down a Spanish case study.

Stopped the drug fairly easily as I had been very cautious about levels. Immediately felt hugely lifted (could have been the excitement if being able to go to St Vincent in a tee shirt for first time in 4 years)

I would say really unless you're in agony just don't bother. It's a dirty beast of a drug

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Oct 8Liked by Gavin Giovannoni

Another helpful post ProfG.

Not because the info is new to me, as you’ve previously provided it, but because it’s always beneficial to be reminded not to become complacent and rather to remain alert to the side effects and interactions of medication used in MS.

I take 600mg Gabapentin daily for pain, 300mg late pm and another 300mg around 8.30pm. Fortunately I have had no side effects and am only on one other med - HRT. When I have tried to reduce the dosage the neuropathic pain becomes far more uncomfortable, so I know that this dosage continues to work well for me.

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Oct 8Liked by Gavin Giovannoni

Due to a base of the spine issue, that can cause me great pain particularly at bedtime, I am prescribed 350mg of Pregabalin at night, as well as 70mg of Amatryptoline. The pains also trouble me first thing bin the morning, so a further 200mg of Pregabalin is prescribed to help get the day started.

The pain is due, I have been told, to a compression of the lower spine, and is not MS related. Two minor day surgeries have been experienced where the aim was to block the nerve root causing the trouble - neither has proved successful.

Friends recoil at the amount of Pregabalin being consumed, but it doesn't seem to affect me in any adverse way, it just helps to control the pain successfully, allowing me to get a good nights sleep. I also consume 30mg of Baclofen (3 x 10mg spaced evenly during the day), and Modafinil in small doses (100mg morning, 200mg at lunchtime) to aid my concentration during the day (this was prescribed much earlier then the Pregabalin!).

I'm a 64 year old male, diagnosed with Prog MS some 15 years ago, swiftly re-diagnosed as Secondary Prog MS. Any comment would be appreciated.

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It is horses for courses. Some pwMS tolerate these medications very well without side effects. I am not saying they don't work. All I am saying is be aware of adverse side effects and drug interactions.

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Oct 8Liked by Gavin Giovannoni

Hi Russ, I envy your ability to tolerate a medication for concentration/energy! Sounds like your plan works for you. (Dx RR 1995, SPMS.) Now dealing with issues at 70 which also are not necessarily MS related. Best to you.

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Oct 9Liked by Gavin Giovannoni

I know someone with level 10 MS neuropathic pain who has been on opioids for years and hates the side effects. I've told her about compounding pharmacies that combine opioids with ultralow-dose naltrexone (1-4 mcg) but she could not find a doctor to prescribe it.

@gavingiovannoni Today I found a study on Oxytrex (oxycodone + ultralow-dose naltrexone) a prescription drug that has been around since 2005! You don't have to explain anything to your doc, just ask for the script and they can see it in their PDR. And it will be covered by insurance.

This approach allows anyone already using oxycodone to reduce the amount but get the same pain reduction. Could also be a safe way for those who have avoided oxycodone to use it safely if they have pain scale level 5-10? A 2008 animal study showed Oxytrex was effective for neuropathic pain as well. And for less severe pain, have you written about LDN?

This review covers both Oxytrex and LDN. Can you tell us how these compare to the Gabapentinoids?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10296090/

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I have covered LDN many times in the past on the MS Blog, which can be found in my blog archive. I will do a separate newsletter on this. In general chronic neuropathic/myelopathic pain respond poorly to opiods, which is why they are not commonly used.

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Oct 27Liked by Gavin Giovannoni

Coming back to this so if pregablin and tegretol did nothing for neuropathy pain / symptoms is it even worth trying gabapentin?

I refuse to go to amitriptyline so I’m pretty much out of luck

LDN did nothing at all after a year of trying

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Oct 8Liked by Gavin Giovannoni

Professor G, do you have any insight into migraine w/ aura for pwms? It's my number one symptom as I am currently EDSS zero.

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Oct 8Liked by Gavin Giovannoni

Thanks for this post, Prof. G. I have a bit of experience on this topic that may be useful for you and others.

I’m a 74yo male pwMS, onset age 55. Spasticity has been my most disabling MS symptom. Because of it I’m no longer ambulatory, EDSS 7.5-8. A lot of my MS treatment has been aimed at keeping the tone down to a dull roar both for functional maintenance (and gains after setbacks) and to enable weight-bearing, strength-building exercise. Of course I have other symptoms, and other age-related conditions, and take medication for them too.

I have no problem taking drugs that help, but I want to keep the number and dose as low as possible — a goal my clinicians share. However, as luck and MS would have it my polypharmacy tally is ten. Three are for neurogenic bladder: mirabegron 50 mg/day, tamsulosin 0.4 mg and solifenacin 5 mg (urologist). Venlafaxine 112.5 mg (neuropsychiatrist) for low mood. Vitamin D 2509 IU (physiatrist) for bone health and neuroprotection. Pravastatin (GP) 40 mg for cholesterol. Candesartan 4 mg (GP) for hypertension. Tizanidine 24 mg (neurologist) for spasticity (I did poorly on baclofen). Pregabalin 150 mg (neurologist) for lumbar radiculopathy. And modafinil 400 mg (neurologist) to restore alertness due to sedating effects of the others. I also receive botulinum toxin injections (physiatrist) in the adductors, gastrocnemius (both bilateral) and left hamstring, an addition to the anti-spasticity arsenal.

Regarding the gabapentinoids, while they may be beneficial against spasticity they were initiated for neuropathic pain caused by an L5-S1 sciatic nerve root compression visible on MRI. This is a cyclical stabbing sciatica-type pain, 5-7/10 if untreated. I started on gabapentin, then was escalated to pregabalin PRN and reached as high as 250 mg/day in four doses.

However, I was anxious to reduce daytime drowsiness and in 2023 began receiving a steroid nerve block injection to the site (hospital pain clinic, anaesthesiologist) guided by fluoroscopy. I’ve had four of these procedures over 18 months and expect to have another in early 2025. They take 30 minutes and are quite tolerable. They are successful to the point that I’ve reduced pregabalin to 150 mg/day over four doses. This I believe is only about one-quarter of the recommended daily maximum. I’m thrilled to be able to reduce the dose of a drug with sedation as a side effect.

I’m also being assessed for the possibility of intrathecal baclofen therapy, in which a refillable pump is implanted surgically in the abdomen with a catheter leading to the spinal column. As many of your readers know, baclofen from the implant is dispensed into the column and absorbed into the spinal cord directly, without crossing the blood-brain barrier. Keeping baclofen out of the brain and away from its receptors reduces the dose needed for muscle relaxation and lowers sedation substantially — at least, that’s the theory. I would hope to tolerate baclofen delivered this way at the lower level much better than I did the oral formulation.

Intrathecal baclofen, if successful, should eliminate the need for tizanidine. I would expect to continue the modest daily doses of pregabalin, venlafaxine and the bladder drugs, as well as botox 4x/yr and the intrathecal steroids 2x/yr. Maybe I’d also be able to cut down or even eliminate modafinil.

I have a dozen specialists who want a medication update at every appointment, so I have all my Rxs on a letter-size (≈A4) Excel spreadsheet that I can update as needed and e-mail on request. It includes the name of each one, prescribing clinician and telephone, class of drug, therapeutic goal, daily dose, dosing times and amounts.

I try to monitor all this responsibly. If a clinician wants to put me on a new drug I insist on detailed risk-benefit explanation and discussion of alternatives to pharmacotherapy. Interaction research is mandatory. I usually check on drugs.com just to be sure. I’ve taken the initiative to get a clinician’s approval to discontinue drugs (e.g. clonazepam, dalfampridine).

But in my admittedly layperson’s judgment, there are few alternatives to the MS symptom management pharmacotherapies that are considered first- or second-line. It’s not our fault that so many are prescribed off-label. It’s unfortunate that there are so few alternatives to the standard pills, since so many of us find them hard to tolerate (apart from sedation, some experience dizziness, nausea and, with pregabalin, weight gain). It’s also worth noting that baclofen and tizanidine are at least half a century old, and that protocols for combination drug and exercise therapy for spasticity are poorly developed.

Believe it or not, there’s more to say on this topic, but I’ve overtaxed everyone’s patience already. Thanks again for the opportunity to make these thoughts available. I hope they add to your appreciation of the topic, even if only minutely. All comments gratefully received.

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Oct 9Liked by Gavin Giovannoni

Paul, don't apologise, this is all really interesting. I'm also on Betmiga, solenificen and Baclofen. Also Clonazapam. When I was experiencing extreme sleepiness on Baclofen I was prescribed Tizanidine. At first I thought it was the answer -- very effective on spasms, no daytime sleepiness -- but after a few months I suddenly developed episodes of plunging blood pressure in the mornings and it was eventually traced back to the Tizanidine. Back to Baclofen, back to daytime sleepiness. My neuro offered me modafinil but I really don't want to add to the mix. So now I too am considering the Baclofen intrathecal pump, although spinal surgery does concern me.

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Oct 9Liked by Gavin Giovannoni

Interesting, tizanidine makes me sleepy enough to double as a sleep aid. My neuro also said not to use it when doing anything remotely dangerous for that reason - a warning no other drug ever came with.

Not surprised it affects circulation, it predictably lowers my resting heart rate by a few bpm (which is ok while asleep :-).

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Ha, it raised my heart rate - as a result of lowering my BP I assume.

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Oct 8·edited Oct 8Liked by Gavin Giovannoni

So happy to read this post! When I was first diagnosed 11 years ago, Baclofen 3x day (no idea of the per pill dosage) was prescribed. My neuro at the time told me everyone with MS was Bi-polar and needed meds for mental stability too. And the prescribed DMT.

Tried it. Decided I was better off with a DMT and other than the occasional bout of depression (managed with shorter course of meds or talking with a therapist) no other meds!

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We’re all bipolar?? Hmmm..

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Oct 9·edited Oct 9Liked by Gavin Giovannoni

Also, I don't think gabapentinoids are even first line for BPD to begin with...

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Oct 8Liked by Gavin Giovannoni

I have a lot to say about Gabapentin. My husband was prescribed gabapentin for nerve pain (not MS-related). He could hardly stay awake but the most significant side effect were severe mood and personality changes. My husband of 20+ years was suddenly a different person (for the worse) and we began to have severe marital problems. He became really impatient, argumentative, paranoid, critical/judgmental, sarcastic... you name it. We realized something was wrong and he discontinued it immediately but to this day, I believe it has permanently changed the wiring of his brain--as if his frontal lobe doesn't have much of a filter. 3 years later, he has mostly returned back to him old self but like with something that is almost like a brain injury, it has taken a LOT of time. And as for me, I thought about divorce constantly--all this happening at the same time that our 19 yr-old daughter was diagnosed with MS. I had to grieve the man I knew and loved and accept that this (new) person might be all I get now. Like I said, he's back like 90% of his old self but it's still hard especially when it seems like he's slipping back into gabapentin-brain behavior.

I won't even give gabapentin to our animals when the vet prescribes it and warn anyone I know against it.

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Oct 8Liked by Gavin Giovannoni

I’ve got RRMS and due to stable MRI’s not eligible for DMT’s… but due to daily pain,stiffness, spasms etc.. do take low doses of Amitriptyline(20mg) and Baclofen(20mg) at 7pm each night also 300mg of Gabapentin at 10pm for Restless legs. This enables me to sleep better as I also have Obstructive Sleep Apnea and am on CPAP. I was not informed of any interactions with any of the medications, I chose to take the Baclofen in the evening only due to daytime brain fog. My current dilemma is whether to start on Gabapentin for increased pain in my leg during the day rather than Zapain which I currently take. Most days I find one dose is enough to trick the brain from focusing on the pain…. I will be questioning at my next appointment if I need the Amitriptyline with Gabapentin…….

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Oct 8Liked by Gavin Giovannoni

I have been taking Gabapentin for many years in increasing doses. I was unaware of this information. Guess what I am going to be asking about at my next 6 monthly review!!?

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