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A MyMSTeam Member asked a question πŸ’­
Preston, UK

Hey all,

So ive been on Baclofen 60mg per day for the past 4 years or so, ive noticed over time its become less effective. Im also on Tizantadine 6mg per day and Clonazepam 0.5mg per day. All for spasms.

Ive also been on these other medications for years too. I'm worried ive reached the end of the line with medications? I take Pregabalin 600mg per day for nerve pain to ( this is some what helpful)

Im due to see my Neuro in October. Im worried about bringing these things up incase they tell… read more

3 hours ago
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A MyMSTeam Member

Yes I have a baclofen pump implanted as well. Spasms have pretty much disappeared and I am able to sit and bend my knees again. Before when I sat I had stiffness so bad my legs would shoot straight out!! It has been a relief and the adjustment has been tricky. I too take 4 mg tazanidine, Dantrolene 175 mg, 1800 mg gabapentin, as well as 15 mg oral baclofen. The purpose of the pump was to get off the oral baclofen, but we have not found the correct mix yet. I do believe having the baclofen going from the pump to my spine is a game changer for the better! Let me know if you need any info on it?

28 mins ago
A MyMSTeam Member

I have an Intrathecal Baclofen Pump implanted in my abdomen that delivers Baclofen directly to my spinal canal. My dose is currently about 950mcg. That is less then 1mg. I was taking up wards of 200mg of oral Baclofen a day. My first Pump was implemented in September 97. The pump gets replaced about every 6.5 to 7 years. It also has to be refilled every 2 to 5 months depending on the dose and concentration of the Baclofen.

55 mins ago (edited)
A MyMSTeam Member

Could try low dose naltrexone (ldn) shrug πŸ€·πŸ»β€β™€οΈ

2 hours ago
MyMSTeam

It's completely understandable to feel anxious about that October appointment, but please don't let that fear stop you from having an open conversation with your neurologist. You absolutely deserve to advocate for yourself, and bringing up concerns about medication effectiveness is exactly what those appointments are for!

Show Full Answer

It's completely understandable to feel anxious about that October appointment, but please don't let that fear stop you from having an open conversation with your neurologist. You absolutely deserve to advocate for yourself, and bringing up concerns about medication effectiveness is exactly what those appointments are for!

Here's the thing β€” you haven't necessarily reached the end of the line. There are still some options worth discussing with your neurologist. Intrathecal Baclofen (ITB) Pump

Even though oral baclofen has become less effective for you, an ITB pump delivers baclofen directly into the spinal fluid. This means a much smaller dose can have a much bigger effect β€” only around 4% of oral baclofen actually reaches the spinal cord. The pump is surgically placed under the skin of the abdomen.

Many MyMSTeam members have had really positive experiences with it:

- "I had a baclofen pump implanted, and now I can stand up straight, have no pain, and feel like a normal person again"
- "The pump was the best thing for me. I can't believe how much better I am!"

It does come with its own risks to discuss, such as infection or pump malfunction, but it's a well-established option in the UK. Botulinum Toxin (Botox) Injections

Botox is sometimes used as a localised muscle relaxant for spasticity. It targets specific muscles rather than the whole body, which can mean fewer systemic side effects. This is available on the NHS in certain cases, so it's worth asking your neurologist if it could be suitable for you. Non-medication approaches to combine with treatment

Pairing medication with other therapies can also make a meaningful difference:

- Physiotherapy β€” especially with therapists who specialise in MS
- Stretching routines β€” particularly in the morning when muscles tend to be tightest
- Strength training β€” some MyMSTeam members have found this really helpful alongside medication

One MyMSTeam member shared: "Walking issues and spasms for me got better with baclofen and a lot of physiotherapy. It takes some time to make a difference but stay persistent!" Going into your appointment with a clear list of your current medications, dosages, and how they're (not) working will really help your neurologist understand the full picture. You're not being difficult by raising this β€” you're giving them the information they need to help you better. πŸ’™

3 hours ago

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