Neurologist is suggesting stopping Meds

My wife has had PSP since May 2010 and been on Carbidopa and Ropinirole and they helped a bit. We had a visit to the Neurologist this week and he is suggesting she stop as they are probably no longer helping and the regime involves a lot of pills and she hates taking pills.

Has anyone else had this advice? He is happy to continue if she wants.

8 Replies

  • Geoff has never taken any medicines for PSP and he has had it for about 6 years now.

    Good luckxx

  • hi rob i hate taking pills as well i have psp but i have never been offered anything at all except madopa by my own dr but that never worked anyway that was two years ago now and my nuerologist has never offered me anything either except hes advice to look on the net if i wanted to know more about psp \\ but hes a good bloke but getting back to your question if its doing your wife some good then stick with it mate the nueros are supposed to know the answers are'nt they \\ sorry i cannot be more helpful to you good luck to you and best wishes to your wife peter jones queensland australia pso sufferer since 2004

  • My husband with PSP has elected to (after consuIting with his neurologist) to take a number of different types of medication over the last eight years.It has been one or trial and error. Most of those prescribed are for Parkinson's disease, depression, or sleep deprivation. Some have been tried by John and then stopped and then he has restarted at a later time. One was started and stoppped within 24 hrs due to hallicinating side effects. Most have been gradually increased or reduced over time and are prescribed at doses well over what someone who has Parkinsons would take. John (and his neurologist) have stated they have a positive effect for John's functioning. I am not so sure - as his mobility still remains, on and off during the day, but his mental strengths and abilities are open to debate. So perhaps a preferred option is - stop the drugs and see what happens - closely monitor any changes and keep a diary - ( I found a diary helps as once I write something down I clear my mind) and report back to your neurologist and discuss whether is relevant for your wife to take the medication again?


    Alana - Western Australia

    N.B. John is still taking the medication that you ask about and has displayed side effects which were not conducive to a closeknit home life - hence he longer lives with his wife and daughter.

    He did cut down and almost stop the medication a couple of years ago - however could not cope with the loss of mobility.

  • Dorothy-thompson

    On the NHS in the UK in London one sees a neurologist once a year and they promise much and do nothing. That has been our experience since my husband was diagnosed with PSP since October 2010

    good luck to all

  • May I ramble on a bit about medications for PSP and symptoms?

    There are no medications to prevent the progression of PSP (and similar neurological conditions). However, some doctors will prescribe medication to treat the symptoms.

    My wife has had PSP for about 5 years, and our neurologist does NOT prescribe medications for PSP symptoms. I agree with him in this matter. They have limited (or no) effect with respect to the major symptoms (balance and falls, eye movements, swallowing and speaking difficulties, personality changes, cognitive changes, neck and back stiffness, chronic fatigue, sleep disturbances)

    When some of these symptoms become severe, it's only natural for many carers and sufferers to try strong medication (suggested by neurologists) that may alleviate them. This can result in some improvement, but it's often minimal and short-lived, often with side effects worst than the symptoms, and can also be due to the placebo effect. If the sufferer is taking medications for other ailments like diabetes or heart/blood pressure problems, interactions must be considered.

    Of course, if aspiration pneumonia occurs then using antibiotics would need to be used (provided the sufferer decides to accept treatment). Although many PSP sufferers do not experience high levels of pain, it would be important to give pain relief medication should pain occur (all neurologists and GP's would endorse and assist in this situation).

    Of course, the above is not about the use of medications like eye drops for dry eye or botox for closed eyelids etc. Such treatments are basic aids.

    Some of these decisions about medication can be so difficult, even if it is something like incontinence or sleep problems where anticholinergic medication is often used. This type of medication has been described as unsuitable for PSP sufferers as it increases the existing cognitive dysfunction.

    Some people will only use diapers (pads) for incontinence and just keep an eye on rashes. A much more benign approach.

    All the best in making these very individual and difficult medical decisions!

  • Long story but my wife has been on Carba/Leva then when we thought it wasn't working she wet off. Then I thought perhaps there is some slight help with the med that we aren't detecting because it is so small. So back on she went with no noticable improvement. Last visit to our Neurologist at the University he suggested taking her down off it and replacing with Amentadine. When we started decreasing C/L she got really worse. I contacted him and he said to put her back on it and not try the Amentadine at this point. She showed quite a bit of improvement going back on C/L and so it now back on it for now. Not suggesting you do the same but if you step her down off C/L you'll be able to see if there is a difference. You didn't say how much C/L she was taking a day.


  • Thank you all for feedback we really appreciate it.

    To answer Jimbo on dosage she is taking 6 x Carb/lev 100/25 and 3 x Ropin 1mg per day. They did improve her balance quite a bit initially, 3 years ago

  • Hi all

    I was on car/dopa for a few months h

    Then amantadine for about 6 months

    But the neuro did not think they were helping and neither did I so i stopped them

    No difference to me except that now I am falling dozens ofttimes a day lol,Jill :-)

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