Hi folks Hope you are all as well as can be Sorry I’ve not been on for a long time but I’ve been trying to come to terms with my DX of PPMS I’m in the exceptence stage now after such a roller coaster journey !! Any way my question is about spasticity with witch I suffer terribly. I’m on 20mg of baclofen 3 x daily and think I’m getting used to that amount now after tiptrating the dose over the last 18 months. How much more can this be increased before I am at the limit ?? Many thanks Bairdy x
Hi Bairdy
My gp told me I could go up to 60mg a day, I would have a word with either your gp or ms nurse before upping the dose anymore.
It may be thatbthey can change the medication for you, take care.
Pam x
My GP said up to 80mg a day, though the leafet in the box does say 100mg but s above, please see GP before doing this. I have just started on baclofn myself, started taking it two weeks ago. Up to 40mg a day so far. I still get bad spasticity but it proides such relief and I have been sleeping so much better.
I hope you are well,
K
Hi, just be VERY careful, as I believe that as well as reducing spasticity,it weakens the muscles and can cause falls.
Baclofen is usually a drug which we are told to find our own level of. You are already on a high dosage…but some folk can tolerate as much as 100mg a day.
luv Pollx
I’m not an MS patient, but I’ve been prescribed 10 mg Baclophen 3/day. My pharmacist warned me that one of the largest muscles is my heart and to keep an eye on my blood pressure since Baclophen is also prescribed for BP regulation. Too much can REALLY lower your BP. Just a thought.
Thanks folk for your posts I’ve been to my GP And I’m now on 20mg 3 times a day I hope it helps me Cos this stiffness and spasticity is getting me down Regards mick x
Hope it works out for you Bairdy.
I take 30mg at night but nothing during the day (helps me sleep, and I can’t really nap during the day). When I ran out for two days, though, my legs went absolutelty mental!
So be warned; coming ‘off’ Baclofen tends to be the real issue.
Clucker, so true! I’ve been taking them again (just half pills!) literally, just to try to lessen the spacticity a bit, at that point in the day that it gets more difficult, so been cutting down and today none… the breeze caught me awaiting my pick-up from work and I started shivering - it was horrible, I went really jolty. I think stopping clearly is quite noticeable!
Sonia x
Bairdy, good luck, hope it works well for you. I had side effects but it works really well for lots of people
Sonia x
Hi I’m graham, iv been on them for 18 months now, 40mg I dicided last week to try stoping them, as I read they may weeken the muscles, and I do fell weaker than I was, after two days I could hardly walk, so am taking them again, still not great but almost felt like a junky that needed the drug? Worrying that I may be sociologically telling myself I need them, be careful, don’t rely
Hi folks Thanks for your replys I took the baclofen like my GP said for 2 days But I don’t like how i felt … Weaker and more wobbly So I’ve gone back down to 3 a day and now I’m back To my usual self … STIFF can’t win
Hi Bairdy
It appears to be trial and error to get the dose that is right for you, but hopefully you are there now.
Pam x
Hi Bairdy
Baclofen doesn’t suit people who rely on their spacticity to keep them mobile so that could explain why you became weaker on a high dose. Unfortunately with neurological conditions it’s very much trial and error. I hope you can find a balance but just remember that what suits many other people might not be right for you so don’t beat yourself up if it doesn’t work. I have to put up with spasms as my nervous system is very broken and most of my strength is through my muscles but I’d rather have it this way. It’s all give and take
Cath xx
Hi, I am a full time carer for my husband who has primary progressive MS. He has been on baclofen for year, but as he has progressed they r not as affective. We have bought some code oil. Has anyone used it? Was it any good. Feedback please x
Hi there, I have PPMS & I wouldn’t recommend Baclofen at all. It turns legs into matchsticks. The muscles completely waste away & it takes what seems forever to restore the damage it does.
Try Apple Cider Vinegar with Kelp, Lecithin & Vitamin B6 from Ebay. CBD oil is quite good. A few drops from a pipet under the tongue, rubbing CBD balm on the problem areas & using bottled oil for massages.
Along with this I use B12, D3 & eat plenty of greens. Beans, Broccoli, Cabbage, Spinach, Peas & Kale.
A healthy diet with Mushrooms, Grapes, Blueberries, Bananas, Oranges, Hazel Nuts, Wholemeal Bread, Smoked Basa Fish, Honey, Lemon, Lime, Garlic, Onions & a regular swig of Apple Cider Vinegar is what I use. And I’m getting good results.
My key help has been using a Circulation Booster & constantly exercising. Use it or lose it. Muscles waste away if they are not used & become too weak to do anything. Press-ups, sit-ups, lunges & deep breathing. Keeping the body active & very careful not to over heat. Drinking water constantly is great. It helps to shift everything around the system better.
Take care out there.
Terry
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I find it useful to bathe in pure clove oil - also I like to blend a few grams of Crocus sativus threads into each meal! … Seriously though, do you consider it fair, to keep harping on about the harm Baclofen causes (allegedly), when so many folk on here a) have been on the drug for many years believing it to be helping to some degree, or b) are newly diagnosed and just starting taking the drug, or c) are long term sufferers who will try just about anything if it offers some relief. Fair enough if you’re a Doctor stating absolute scientific facts but otherwise you’re just scaring people and I dare say, making some wonder whether all their symptoms are Baclofen related, which they’re obviously not! Take care E. j. Thrubb
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Me personally, I had a bad experience with Baclofen. I’m not going to sing it’s praises am I? There’s other ways to help with pain relief & spasticity. Absolute scientific facts are a myth. I will stick by recommending an alternative, from experience. Once muscles waste away. It takes a whole lot of hard work, to regain. And when people with MS have chronic fatigue & poor balance. That just adds to the struggle. Diet & exercise should be the pinnacle of treatment, advised by anyone. With a chronic disease that has no cure. People can keep taking Baclofen. I have no problems with choice. I’m done with researching MS & now doing positive things to improve the future. MS has been around for a while now & after so many millions have been spent, with few results. I’ll stick to, the going back to basics. My previous Doctor, didn’t even know what MS was. For 10+ years he was prescribing medication, for whatever he thought. He retired on a handsome income, when I was threatening medical negligence. I don’t put GP’s & medication on a pedestal. Use it or lose it. Terry
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Hi Shopping 23 I was diagnosed with PPMS September 2017 but have been on Baclofen for years due to muscle spasms in my left leg mainly but sometimes both, now I was told the spasms were being caused by my two spinal conditions(spinocerebellar degeneration & lumbar spondylolisthesis) now I wonder was it MS back then & nobody noticed anyway I digress when my doctor gave me baclofen & my body started getting used to the baclofen they added another anti spasm drug called Dantrolene & I find the combination of the two work pretty well & if the spasms get really bad my doctor gives me a steroid injection in the top of my thigh close to my hip, this used to calm the spasms down for up to 18 months but I’ve had then over the years then length of time they work for has dropped it’s now working for about 3-4 months but I would highly recommend the Dantrolene & steroid injection maybe your husband could try mentioning it to his doctor & see what they say, good luck.
I’ve been on Baclofen for many years for muscle spasms connected to two spine conditions & my doctor also prescribes another anti muscle spasm medication called Dantrolene & the combination work quite well for me, & if the spasms are really bad & I can’t bear the pain she prescribes 5mg Diazepam & if the Diazepam doesn’t calm them down my doctor gives me a cortisone steroid injection into the top of my thigh.
Your husband could always try asking them about these, the injection used to last about 18 months but sadly only last about 3-4 months but I dread to think how many years I’ve been having them for. I wish your husband good luck in possibly trying the two medications & possibly the injection.
I had very bad side effects with Baclofen - it made me dizzy and I couldn’t function. Am now on dantrolene but only 25mg a day. I was asked to increase this gradually to 3 times 25mg but when I did this I got very bad stomach upsets so decreased it. My neurologist also advised that I try taking 100mg biotin 3 times a day as a researcher has found this helps with stiffness in the legs, so am also trying this.