red listed drugs

Hi all,

Having been diagnosed with CFS/Fibro just over a couple of months I did a bit of research and have chatted to others about recommendations ... One thing that came up was melatonin - Circadan on prescription. However, my GP informs me that this is red-listed in my area and therefore unavailable to me.

Has anyone else found this to be the case ? Should I fight for this ? If so,how? Does anyone take this and find it helpful ? What alternatives can anyone suggest ?

I do feel that my inability to get stage 4 sleep is a major factor in my symptoms and believe that my ability to cope with life / pains would be improved with quality sleep ( I can get to sleep and stay asleep for -10 hours but still feel as tired as when I went to bed !)

Thanks for any advice


17 Replies

  • I have looked at quite a lot of research on Melatonin, and have found that it has been used for insomnia in people over 65, and also to improve the symptoms of jet-lag.

    It has been shown to cause lethargy and depression in many patients. This is not a sleeping remedy, but a very powerful neuro hormone, and as such can have serious side effects,

    It has been shown to be no more effective than a placebo at increasing duration and quality of sleep. I guess this is why it has been removed from the prescribing list.

    Your doctor may be prepared to write a private prescription for you if you are determined to try it.

    I don't know how much this would cost, but you would have to pay his fee, plus the cost of the drug, which is actually quite cheap.

    Here's a link about sleep disorders which you might find helpful. Some of us here have found after much trial and error, that the old-fashioned tricyclic anti-depressants work as well as anything at helping fibro sufferers to get a decent sleep - may be you would like to ask your GP about these.

    Hope you have a good night before too long :)

    Moffy x

  • I don't think you can have this, in our country on prescription it's more America

    I don't have a clue as to if it works, there is such a lot out there as you know

    And not much works it's just a waste of money, but then every one is differient

    I do know you have to be careful as it interacts

    with other medication, you can get it from a Internet place beginning

    With A

    I don't know if I can say the word as it might be advertising, I take

    Magnesium before I go to bed, I'm not sure if it helps or not, I'm lucky

    My doctor prescribes a benzo it's only .05 and I only take it if I get a

    Flare as it is very addictive, I know a lot. Of people on here take

    It every night, I think it depends on your pain and how you manage

    Lack of sleep.

    I like you don't sleep days at a time, it makes the pain worse, and it's

    Very hard to keep down a job.

    I don't take melatonin as it is not recommended with cymbalta

    but I wish you luck if you decide to buy it, but please be careful

    There must be a reason for doctors not proscribing it, ask him

    first, and I'm not sure but I think that the other name ciradan is

    a name for sleep rhythm, and not another name for melatonin

    But I could be wrong.

    Viv x

  • Yup after 23 years with fibro in the last 18 months I get 7 hours of sleep every night ... I wake up refreshed .. I take a very very old and cheap antidepressant at night 75mg dosulepin .. Hope you find something that suits you ....

    Vg x

  • I asked my gp for dosulepin and he said no, too many side-effects especilly for peope with heart problems.

  • I think its just what suits each person .... I know loads of people on here are on amatriptaline or fluoxetine and they both made me so ill .... Before I tried dosulepin I was on the verge of a breakdown I was hallucinating from lack of sleep.... Obviously it won't suit everyone but for me its perfect.

  • You're right. I'm not able to take any anti-depressants due to stomach problems.

  • Aha now I am not allowed any painkillers stronger than parcetamol. Due to stomach problems... Hmmm stomach removal.... Would solve my diet issue too :)

  • Here is some information on sleep medications and Fibro:

    It's worth noting that sodium oxybate is rarely available and that, since that webpage was published, the American FDA decided not to approve it as a medication for Fibro, despite evidence that it can be helpful, because of the risks involved (it's the same compound as GHB, the street drug & date rape drug).

    If your doctor cannot find you a suitable alternative, it may be worth trying to challenge the PCT's decision. However, as Circadin/Melatonin is only indicated in the BNF for short-term use and the research on its use for Fibro is not clear-cut, it may be ore difficult to justify wanting your GP to prescribe it.

  • When it comes to treatment or drugs your best of researching fibro with NHS its what our doctors work within this framework. At least then you wont be disappointed and remember the Americans and others all have wonder cures and I bet they all have something for sale too.!

  • Hi.I live in USA so I don't know all your regulations. Melatonin is over the counter here, but doesn't work for everybody. My MD gave me a restoril Rx and I get a good night's sleep every night with no hangover. I don't know if you have a different name for it but you could look it up. I don't care if I have to take it forever, at least my muscles feel rested in the morning. Good luck. :) MGC

  • You can buy melatonin on ebay. I use it all the time. It helps me to get to sleep... It does not help me to stay asleep though...

  • My GP recently looked into giving me melatonin as I have had over 4 months of acute insomnia and he is reluctant to keep prescribing Lorazepam (only thing that works for me). He said melatonin is available on prescription, but only to people over 55. I'm not in that age group so can't get it but he said he would look into exceptions. Just shows they often tell us all different tales.

  • Melatonin is only meant to be used as a short course. I had a course years ago for 3 weeks and wouldn't have wanted to take it for longer. That was prescribed circadin. It was effective for a while. It can jolt the brain into altering

    sleep rhythmn. What is can't do is fix the deep sleep issue......which I also have.....

    You can buy melatonin on amazon, but I would check what other meds it interferes with. I don't take other meds.

    I try short doses occasionally but usually suffer side effects.

    I have an occasional use sub lingual melatonin is insomnia really hits. I haven't used it for a while.

    I work on the deep sleep thing by detoxing and diet. My sleep quality hasn't been too bad recently....although I have to be really eye closingly tired before I go to bed. I choose late night activity like writing and meditation to achieve this.

    I went through a period of normal sleep time being 5am till 2pm....but that has thankfully improved. Its now midnight - 1am ish till around 10 -11am. I get to SEE some proper morning lol

    I had vivid dream again last night, which tells me deep sleep was not achieved. Brain fog becomes worse. Usually means I'm doing too much. I have to have paced and have enough energy left for sleep x I've just got back from visiting my 91 year old mum lol. She had me spring cleaning ! So I'm not surprised lol

    I hope that helps x

  • Thanks for all the replies - good to hear from different people and different views.

    I am currently taking amitritalyne 20 mg to supposedly help me sleep - but I never had a problem getting to sleep ( single parent to two teenagers, working full time and trying to keep up some semblance of normality with social activities ) - though trying to get to bed for 9 30 most nights as I definitely need to by then.

    Checked with my GP surgery this morning about referral to CFS/ME service in this area - they think they have sent my letter off, but not sure .. so I asked them to send again and I will probably wait to discuss this drug with them there.

    I did buy some melatonin online but unhappy taking something that I am not being prescribed or monitored on. But told my GP this and he just shrugged ...

    A friends' daughter in surrey ( aged 18) was prescribed Circadin for her ME so thought I should be at least allowed to try it for myself..

    All in all symptoms have improved with cutting out diet coke, increasing vitamin b12 and taking co enzyme q10 but just wish I could wake refreshed.

    Not feeling well today though ( though I think this is a virus on top of everything else) so taking my first day off work this year ( try to plod on otherwise -even if it means napping at lunchtime and getting pj's on by 5.30 - no work = no pay so need to try to get there when I possibly can).

    Thanks again and gentle hugs to everyone here ... x

  • Am I missing the point here? You start off by saying you can sleep for 10 hours!

    If this is true, surely you don't need any medication. I rarely sleep longer than 2 1/2 hours in a stretch, sometimes only 12 minutes. I just get used to it, that exhausted feeling, & plod on best I can!

    Gentle hugs & sweet dreams!

  • Morning all -

    Yes theshadow, my point is that I can "sleep" for 8-10 hours BUT it is not at all refreshing and it feels like just 2 hours because I never hit the level 4 deep sleep. Seems I spend all ( well nearly half anyway) my time sleeping - yet frustrated that it never helps and I am still as exhausted as if I had had only short sleeps.... Haven't found anything that helps yet .

    Best get to work for now - tired as ever though "slept" 10-7 ...


  • I don't think you will find anything that helps.............A symptom of Fibro is feeling exhausted!

    Doesn't matter how much sleep we have, we always feel the same. Hence the plodding! lol

    We just have to get used to it, I'm afraid. Good luck!

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