Has anyone here had experience taking Tofranil and what should I expect?

My lovely new doctor is finally coming around to deciding that I may have some form of CTD but is not really sure how he's going to tackle it and minimise unnecessary toxicity. Before we go head first into hydroxy he wants to try me on Tofranil just in case it is in fact a pain syndrome that I have, which this med is apparently good for. He also wants me to have a sleep apnea test to rule that out.

10 Replies

  • Hello there 👋👋👋👋

    Glad things are moving along in a hopeful direction diagnostically

    Good v interested to read your replies as they come in....I just read what wiki has to say: tofranil (aka Imipramine, sold as Tofranil and also known as melipramine), is a tricyclic antidepressant (as is amitriptyline...which I take for neuropathic pain, 10mg each night as part of my daily combined therapy SLE treatment plan)

    🍀🍀🍀🍀 coco

  • Hi 1985 mum

    As coco has said, I too am pleased your getting health help at last!. These antidepressants can be very good at relaxing and easing pain, and helping sleep. Clever of your doctor to use it as a diagnostic tool. Hope it helps. Good luck for your sleep apnea test. Keep us posted. X

  • Thanks misty. It seems too good to believe that he actually said the words I wanted (but don't really want) to hear at last. I know now we're on the right track and he's being very sensible and cautious about it. He is totally against giving me pred because of the osteopenia (he actually called it osteoporosis). I'm glad he's trying other ways to get around it first. He told me that losing weight would help. I need to anyway and have been wanting to because I don't want it to complicate things further. And he also said my positive ana of 1:80 speckled was significant and specific which I thought was interesting because a lot won't consider a titre that low to be important.

    I feel like I'm walking on clouds and all that self doubt has gone out the window (for now!). It's an incredible feeling to feel believed at last.

  • Hi 1985 mum

    I can so identify with your feelings of elation for being believed!. It makes such a difference and this doctor is great having your interests at heart and wants to do the right thing for you. He's so right to be cautious of the steroids as you have osteoporosis like I do. Are you taking calcium. There are other treatments as well if it becomes needed. Good luck with losing weight, not easy when we're I'll. I've cut carbs right down and cakes, biscuits and eat a balanced diet and have kept my weight down despite taking steroids so you'll achieve it too. Hope you feel better soonX

  • Yes I'm on Ostelin osteoguard which is a 6 in 1 bone formula (calcium, magnesium, vit d, boron, vit k and manganese) which this doctor put me on. I'm a little bit sad he won't let me have pred because when I've been on it previously I can lose weight really easily by just cutting out refined sugar like you have. But the risks outweigh that so I won't dwell on it.

    He did mention trying hydroxy sometime but wanted to see if we could even get around that for now with the tofranil so will be interesting to see how it goes. Tofranil is obviously not renowned for having nasty side effects like some antidepressants can.

  • Hi 1985mum

    So glad your on a good bone tablet. I'm surprised that steroids helped you lose weight so well by cutting the sugars and carbs!. They usually help us put weight on and I haven't found it easy to lose it!. Shows we're all different. I took Tofranil many years ago and didn't have side effects. I took it then purely as an anti-depressant not for pain and found it helpful. Have you started it yet?. Can take awhile to build I think. Do hope it helps you. X

  • Well no I haven't started it yet. I planned to today but when I took the script to the chemist to get it they tell me Tofranil is not available anywhere in Australia at the moment due to manufacturing issues so now I have to ring my doc on Monday and get another script for something else. So it won't end up being Tofranil after all that!! I suspect he will substitute with something like amitriptyline but we'll have to see.

  • Hi 1985 mum

    Oh no, extra stress we can do without!. Good luck for sorting it Monday and let us know which drug you get. Amitriptyline is also good!. X

  • Will do

  • So.....amitriptyline it is! Had first dose tonight......see how we go💃

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