I’d really appreciate your help/comments …I’m currently on the highest dosage of Pregabalin and Amitriptyline and am having a really hard time coping with the dramatic weight gain that these two have very generously piled on - three stones thus far, and counting! I’m very tempted to stop taking them and resort to the use of cannabis as an alternative to help stem the pain. There is no way I could smoke anything, although I’m told that this would be the quickest way to get it into my system, and would therefore need to put it in food. I’m a complete dummy when it comes to this kind of thing and am quite apprehensive as I don’t think I could handle ‘not being in control’. A friend has told me that it would probably be best if I had someone with me the first time …great, that really helps put my mind at rest!
I’m also worried that by stopping the medication dead it would mean going ‘cold turkey’ and thereby having to cope with the withdrawal symptoms… not to mention the inevitable increase in pain levels. I bought a whole load of ‘fat’ clothes a few months ago and now I can’t even fit into THEM. I don’t think I can go on much longer like this.
One not so insignificant side effect of cannabis is “the munchies” - it makes you VERY hungry! So, not necessarily a great subsitute for pregabalin & amitriptyline if weight loss is your goal.
If you do decide to come off the meds, please don’t go cold turkey - all the side effects you had when you went onto them will come back as you come off them, so take it slowly.
If you decide to try cannabis, please be careful about where you get it from. The cannabis generally available these days is super strong and regular use has some very nasty potential side effects (including a very real link with schizophrenia).
If you do decide to come off the amitryptiline and pregabalin I definitely wouldn’t go cold turkey! It’s best to slowly decrease the dose. Have you spoken with your neuro/nurse about the possibility of trying other meds - maybe changing one of your current ones rather than ditching both?
As Rizzo said cannabis can give you the serious munchies (I like that word!) and you’d definitely need to source it with caution too. Don’t just get it from anywhere.
Exercise can help to alleviate (spelling??) stiffness and pain sometimes but finding the right form of it is a bit of a task - taking into consideration what you’re able to do and what your limitations are. There’s a very fine line between doing just enough and overdoing it. Gentle stretches may help over time. I realise that you probably already know that and have most likely tried it. Whilst it’s by no means the answer, every little helps. May be worth trying if you haven’t already, in addition to your meds etc.
Do try to get your GP to prescribe Sativex - lt has the ‘euphoria’ part removed and whats left helps with pain spasticity and spasms. l have never found it to have any of the side effects associated with other meds. And it is licensed for pwms. lts also being used more now for painrelief in cancer patients as a safer alternative to morphine.
I want to back up what people have said about “going cold turkey” Please don’t. Coming off amytipyline too quickly will make you feel ill.
I stopped taking it for pain about 18 months ago. My GP made me do it very slowly whilst an acquaintance was doing it at the same time but opted for immediate stopping. Boy did she suffer with headaches, nausea and tremendous pain.
Thank you all so much for your help…and concern. I’m now realising that this isn’t going to be as ‘cut and dried’ as I’d anticipated and will need some serious consideration. I value the support of everyone here as you are truly the only ones who really know how fellow sufferers are feeling.
I have taken all your comments on board and promise I won’t rush into anything!
I am with you on the weight gain. I too gained from pregablin and amiltriptiline and recently from Ropinerol. I came of the pregablin and amiltriptiline because over 5 years i went from 9 stone to 15 (i had IVF before i had chemo for ms also and the hormone treatment piled on the weight). I tried smoking weed as i had enjoyed it in the past as a non MS’er!! but found it made me feel very apathetic and gave me the munchies!!! So i simply have put up with the pain and the pins and needles and terrible l’hermittes symptoms. I went to slimming world and lost 2 stone in about 4 months and the food is amazing that you can eat - u really feel like you are not on a diet. I then put it all back on in 6 weeks when they put me on ropinerol and that was very soul destroying but now the medication is in my system - i am back in slimming world and lost 5 pounds in 2 weeks so thinks are looking up. Dont just stop your meds because you will feel terrible. I would consider the slimming world diet though and see how you get on!
Good luck, i really feel for you with the weight gain, i know exactly how you feel. PM me if ever you want to chat
Hi just wanted to say I,ve had ms for 6yrs was on a medicine called azathioprine my left hand allways numb my back of legs are numb allways tired suffer from bowel problems & also fatigue probs have had so many relapses & come in rrms catergory & top that memory probs,my weight was b4 ms 8&half stone then with ms it went 11stone then when was I was on this med my weight went bk to 8&half, I,m of this med because it wasn’t working with me I,m on injections which I hate needles & yes the weight has gone up again seem to losing confidence within myself & people who come up2 you & say we know how you feel ie people who don’t suffer with ms duh they don,t but they try 2 my my partner is ok& lil boy but still don’t know what to do any ideas?
Hi Sylvie - oh dear how I can relate to what you are experiencing! I’m on same meds as you and as an estimate (as I dare not stand on the scales), put on about 2 stone in a year!!! Was a svelt S10 now a ballooning S16. I too bought lots of fat cover-uppers last year and they don’t fit either:-( I had my annual check up the other week and said about the weight gain. The meds could be a contributory factor she said (I think more like 100% they are to blame). She suggested that I could come off meds to check but I declined!!! The meds do help numb the pain completely and I am scared to go backwards and experience the excrutiating pain I was in then. I don’t know what to do to be fair. As long as you know you are not on your own.
I know this is an old post but weight gain for me with Amitriptyline has been just over 4 stone…I lost a stone over xmas when was told to lower dosage to go onto Topirimate the weight dropped off with that then Neuro wanted me to stop Topirimate in Jan and up my Amitriptyline again…so far I lose 5lb then it fluctuates back up and then down…caught sight of myself in the mirror yesterday and my face is so bloated
