Hiya everyone Looking for some advice please . I’m coming off pregablin I’m taking 50 mg once day now and it’s getting hard . I’m in so much pain in my legs and feet . Trouble sleeping as it hurts so much . Been on pregablin for two years but pain clinic said they no longer helping me . I’ve cut down from 400 mg to 50 mg over month . I’m struggling now . Went to my Gp last week to get other medication ready to take but he was so rude and didn’t give me nothing except zapain . Can’t take them long term they ok for quick pain relieve . He told me go back in two weeks . I walked out . No support at all . Called pain clinic and nurse left two messages last week and still waiting for call back . What do I do ? Go see new doc may be ? I’ can’t no take nothing I can’t function mun Please help xxxx
Hi Minder,
You should be supervised whilst coming off any medication, particularly strong meds as pregabalin. Personally I would up the dose a bit and try find a level position with it then wean off slower than you have been otherwise the pain will kick in with such verosity youll regret ever coming off it. There is levels of pain as you know. This gp isnt obv iously interested in your concern. I would find another gp to see and up the dose a little then wean off over weeks, if necessary cut them in half until your not noticing any difference. It took me a while to come off amytryptiline. Im back on them now only Im a lower dose and theyre helping more than before. Think it must depend if we are in a big relapse or not?
Hopefully you can then get new meds to help you with your pain. Have you tried amytryptiline? There are different doses available. I know there is gabapentine and lots more which can be prescribed. As we are each different, so each meds helps different people in different doseages, its finding the right one.
Good luck, I hope you get help and sort out this mess, Living with pain is not good.
I used to try music to help relieve some of the pain, it did work for me until I could get the right medication and doseage right.
bren
x
Hi Min,
You poor thing, I have the same trouble trying to get hold of my ms nurse. Do you know if she holds a weekly clinic at all, if so I’d be inclined to just turn up. Failing that go back to yoiur doc’s and if it’s a group practice see a different doc’. Other than that I don’t know what to suggest. But really feel for you and sending ((((HUGS))))
Janet
x
The pain clinic should have given you something in place - even if they cannot remove the pain they can give you management strategies to reduce it or make it cope-able. If they are not returning your calls, you need to contact the PAL service (PALS = Patient Advice and Liaison service) for whichever NHS Trust manages that service. You will find the name of the Trust and their main switchbd number on your appointment card or letter.
Failing that find out which PCT area you live in - and contact their HQ. PCTs also have PALS - either they will investigate themselves or refer the case to the PALs of the relevant NHS Trust. You ought to do this tomorrow.
If you are unhappy with the service from your GP. Contact the primary Care commissioning team of the PCT. You may wish to think about changing GP to one who is more clued in to MS or of a more helpful disposition. Maybe your MS nurse can recommend one. If you need help switching the primary care team at the PCT ( again go through PALs at PCT if this is easier) may be able to help you.
Strikes me that, if you are in more pain without your pregabalin, they WERE working after all!
I’d up the dose again if I were you. If they can’t give you an alternative then, even if it’s not perfect, it’s better than nothing!
Karen x
Hi Minder
I cut mine down but stopped at 25mg 3 times a day this may work for you. Talk to your MS nurse or try a different Dr. mine told me to play around with them and find something that worked which was good.
Love
Yvonne
Thanks guys I just took another 25 mg so it’s 100 mg now untill I can get through to someone . Will contact that place thank you . It’s wrong how they treat u like this . Thank you I’m taking amertripline as well at night
hi minder
i’ve been on 600mg of pregabalin a day for well over a year now and wouldn’t change them also on up to 70mg of amitriptyline at night and seem to keep most pains at bay
so if your coming off them and pains return then they are working
stick with what’s working
baz
Hiya Pain clinic said after year being on pregablin your body no longer needs them . My body is not coping without something . Docs these days don give a toss bout ms and what we go through every day . It’s all down to money . That’s why my go is happy I’m coming off them . This world is gone crazy
hi minder
thing i would like to know is how do these so called experts know how our bodies are coping with the pills we’ve been on??
i’ve tried a few combinations of pills through the last 2 years and the one’s i’m on just now suit me and at my last neuro appt he was happy enough with me to continue on them
they must still be helping you so i would push to stay on them
anyway i think it must be a decision your neuro should make and not a gp or a pain clinic as they both probably have budgets and targets to meet
take care
baz
Yeah that’s bloody right . All money I’m off to bed with extra pregablin and zapain , hope I feel better tomorrow Thanks everyone Xxxxx