Has anyone had any luck coming off Hydroxychloroquine and found an alternative for lethargy and pain. I have SLE, I also take amitriptyline

I also take 60mg of Dihydrocodeine when required. I stopped taking hyrdroxychloroquine 400mg once daily a month ago after two years as I seem to put on too much weight and my BMI is over 30 and have been told to lose weight. I don't think I can go without the medication as I am know suffering with so much pain and tiredness. I also have Tendonitis in my pelvis, had one injection and after three months I need another. I also have three fibroids one sat on my Bladder, one on rectum and one on cervix (I am a mess) any one help.

8 Replies

  • Oh dear...I don't think I can be of any help I'm not on those drugs...I just wanted to say..I hope you find respite soon honey maryx

  • are you sure it was the hydroxychloroquine that was making you put on weight? If going off it hasn't had a significant effect on your weight, and it was doing you some good, then maybe you need to talk to your rheumatologist about going back on it. I know amitryptylline can cause some people to put on weight.

  • Hi earthwitch, yes I did lose weight after about three weeks of coming off them, I took myself off them not my consultant, so maybe it's in the head and I just lost some weight. Amitryptyline does and that also helps with my Migraine which I get in the early hours so I take them at night only, and it helps me get some sleep. Well I think I will have to go back on them as the pain is not worth the trouble. Maybe I will try Weight Watchers then if I do lose weight then I stopped them for nothing, it takes 12 weeks to get in your system as being off for a month I may have to start again.

  • Hi, I take hydroxy & I haven't put on any weight. I've been on it for just over a year now. I stupidly decided that my very clever & knowledgable consultant had got it all wrong & I didn't have RA after all so took myself off hydroxy just for two weeks- result I couldn't walk with the pain in my feet!! I soon went back on them. I think the others are right it's maybe something else that your taking. x

  • I think Earthwitch is correct. The rheumy wants me on amitrip for FMS but my GP is not keen due to the weight gain experienced by most people. I think you will find that is the culprit not the Plaquenil. I am on Plaquenil and haven't gained weight, haven't lost any mind you either. Good luck and as has been suggested best to talk to your medical people for the best advice.

  • Thanks to Caza and Someonesmother for replying its nice to know that there are others out in the world that have same problems but yes I think it could be now the Amitrip as my friend said the same thing that she put on weight also. I am back on from today the Plaquenil as can't cope with the pain anymore. Thanks again guys.

  • Hi - I take Hydroxy and Amitriptyline and have also been putting on weight a lot recently. I don't think it's the amitriptyline because Ive been taking it on and off for a few years now but I need my sleep so I don't think I could give it up just now anyway! But this has made me think at least so thanks.

  • Hi RArebird,can you confirm that you take it for SLE or what you actually take the two tablets for. I agree that although they first put me on the Amitriptyline for Mirgraine I too don't want to stop it as it does help me sleep and without it I don't get any.

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