It’s been a while since my last major relapse but since then my legs have been getting worse and worse, I struggle with stairs and my legs seem to ache constantly, a few months ago I was getting terrible pains in both legs and was prescribed pregablin at 600ml a day, you would think with this I wouldn’t still be experiencing aches and pains, any advise please, still haven’t told my ms nurse
Hi Adam,
Sorry to hear your legs are getting worse and worse, it may be a good idea to contact your ms nurse (after Christmas is over and done). I to have trouble with my legs and take Pregabalin but only 25 mg morning and evening as if I take any more I start getting horrible side effects.Your ms nurse may well put you onto a different drug to help with the pain and it could well work for you, worth a try.
Janet
x
If you don’t mind me asking, what side effects were you getting, I started on 75mg increasing every 2 weeks to my dose now, nice to speak again, I hope you’ve had a great Xmas x
If you don’t mind me asking, what side effects were you getting, I started on 75mg increasing every 2 weeks to my dose now, nice to speak again, I hope you’ve had a great Xmas x
There are alternatives to pregabalin that some people find more effective (eg gabapentin), but it may be that the aches are muscular rather than neuropathic in which case something like baclofen may be more appropriate. Another thing that is worth checking is your vitamin D level - vit D deficiency is common in MS and causes aching joints and muscles. Fwiw, pregabalin gave me bad side effects, primarily vertigo and feeling surreal, but general ‘crapiness’(!) too. It took me four weeks to work up to just 100mg a day. (It works really well for me though and no side effects after the first four weeks.) We’re all different though so what happens to others may not happen to us. I think you should probably give your nurse a ring and maybe ask for a physio assessment - they will be helpful in working out the cause of the aches. Your GP can give you a blood test form for vit D. Karen x
Thanks Karen, I started on gabapentin and changed to the pregablin to try and get shut of the pains, the gabapentin was working for the sensory pains but not the muscular pains, I take baclofen alongside the pregablin too. I’m just sick of feeling like my ms is moving so fast.
Pregabalin works like gabapentin so I doubt it will do much for the muscular pains either. You may need a change of baclofen dose or a move to a different muscle relaxant but do get your vit D checked and see if there could be something else wrong, it’s not always MS. Kx
I thought vitamin d was bad for people with ms. I’m sure that’s what I was told but then again I do get most things wrapped around my head. I went for blood tests 2 weeks ago and need to go back for my results so maybe that will shed more light
Hello Adam,
Sorry for delay in replying, Haven’t felt to good of late. The side effects I got were dizziness, balance problems, feeling surreal and just a general mess, so I’ve stuck with the 25 mg, it’s not perfect but I’m fed up with trying this and that. I’ve tried Tegretol. Gabapentin and now Pregabalin and at present my neuro has told me that as I have spms and I am slowly progressing I’ve run out of energy to try another drug at this moment in time. Don’t get me wrong I haven’t given in but because of my other problems I take such a cocktail of drugs and they just don’t seem to mix very well.
Janet
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Sorry to hear you haven’t felt so good lately, I feel confused and disorientated a little and sometimes a lot (especially if I get up in the night) thanks for replying and hope you feel better soon Hun x
Vitamin D3 is good for MS so I think (hope!) that you must have misheard your neuro. Most neuros are now recommending that people with MS take a hefty D3 supplement. The norm on here is 5,000iu a day, but some of us take more. Make sure and get the actual numbers of your test results - they combine D2 and D3 to give an overall vit D level, but it’s actually only D3 that matters. Also, the UK “normal” levels for D3 are long out of date too. Have a look at the vitamindcouncil website for more info. Kx
Thanks Adam,
I agree with Karen with regards to vit D I take 3000 iu but my doc’ is testing me to see if I need any more, will have to wait and see. Hope you’re feeling a bit better now and as it’s new year soon let’s hope you get a drug to suit you. Do let us know how you get on. Take care.
Janet
x