Modafinil for fatigue

[SC49]

Does anyone know if the drug Modafinil is used in the UK and/ or Ireland to treat PBC related fatigue?

Has anyone here had this drug prescribed and if you have, what effect (good or bad) did it have on fatigue?

Thank you

[nannan]

Look forward to answers on this one.

[imansmum]

Hi,I was prescribed Modifinil for fatigue a couple of years ago.Although it cured my fatigue problem I didn't like the way it made me feel. I was unable to 'unwind' and even when I felt really exhausted,was unable to switch off and sleep.

[SC49]

thanks imansmum - the impression I am getting is that the effects are a little like a caffeine overdose or speed.

I am not sure if it is routinely prescribed in the UK or Ireland now.

I am getting fairly desperate for some kind of a treatment for the tiredness/ fatigue that I am experiencing.! I am worried that sometime in the very near future I am going to lose my job.

I have been off sick for quite some time and the two biggest symptoms for me have been tiredness and problems with memory and concentration. I generally sleep for about 3 hours during the day and then as normal at night. My concentration is limited to about half an hour - less for anything that involves a lot of reading.

I've read on different websites that Modafinil has in the past been used for all sorts of things, some less ethical than others (eg it was prescribed in some places for keeping students awake at exam time!!!) I had also read on a few sites that it has been used in the past to treat both tiredness and concentration problems in PBC.

However, I have also read that the effectiveness is limited - eg the effects wear off after a time, the side effects are worse than the tiredness (mostly the same as you have described) and that it doesn't help with concentration but actually make things worse!

I would be very reluctant to take anything unless I had a reasonable expectation that it would do something positive and not leave me worse than before. So far the jury is out

[Hidden]

Hello everyone.

Prior to diagnose and after for awhile I did suffer from fatigue (itching was why I visited GP, thought tiredness and fatigue norm as was working long hours in stressful full-time job at the time). I have to say a slight change in lifestyle along with knowing that I apparently have something wrong with me (I say 'apparently as I'm still not quite acceptable of it), I can honestly say that fatigue to me seems in the distance past.

I do occasionally start to feel tired later afternoon but that is due to waking up during the night, some nights not going back to sleep especially if plagued with the itch at the time.

I think the drug that is mentioned here (never heard of it) is probably what can be labelled as 'an upper' and if so, then what tends to happen is one then has to take 'a downer' (Zolpadem is one).

Don't know if this is helpful or not or whether it is partly due to me feeling much much better but I tend to have a cup of coffee (ground coffee in a cafetiere) in the morning with breakfast and then one just before the evening meal. I have read that coffee is apparently good for the liver in small doses so thought I'd give it a go as I wasn't overly-partial to coffee previously. You'd probably also get a bit of a caffeine fix from it.

[SC49 in reply to Hidden]

I don't drink coffee - I can't stand the taste or smell of it. Even ordinary tea makes my heart pound so I'd probably be better just avoiding anything at all. You are right about the 'upper' then 'downer' cycle - i hadn't really thought of that. Another good reason to find different ways round it.

I saw a consultant in december and he suggested that the fatigue i have is related to chronic fatigue syndrome rather than PBC (he seems to think that severe fatigue is not a PBC symptom). He prescribed Amitriptyline as a way of regulating my sleep and addressing the pains I get.

Its a low dosage antidepressant and supposedly helps with both fatigue and pain.

The only thing it has done for me is disrupt my sleep even more! I had established a bit of a predictable pattern of sleep - I slept well all night and then had a sleep during the day. Now, I am waking up through the night and still sleeping during the day. I've tried staying awake all day so that I m really tired at night but it doesn't work. I just get more and more 'off balance' as the days go on.

I think I am just going to have to accept that I need to sleep during the day and forget about any drugs or anything else

[Hidden in reply to SC49]

Unfortunately that seems to be the problem with certain tranquilizers and anti-psychotics, they cause additional problems.

A family friend went through a very bad patch a few years ago and he started off on sleeping tablets because he found he couldn't sleep as he kept saying he had something on his mind he couldn't resolve. The sleeping tablets started to cause other problems and then he was on anti-depressants which of course gave him other problems. Given I saw him in the differing states whilst on them, the more side-effects he started to get the worse he started to feel. He was then prescribed anti-psychotics alongside the anti-depressants. I know one of the drugs he was on was the one that was being used with caution in the under 25's at the time due to it giving suicidal tendencies, the very thing that these are supposed to alleviate.

Until a decade ago I wasn't aware that certain drugs like these were being used for other medical problems (ie IBS for one and even itching in PBC as I discovered after diagnose). It came to light when my own sister was thought to have IBS and her GP gave her a prescription and my sister being naiive got the tablets without even finding out what they were beforehand. She only took for 2 days, said she felt like she was in some strange state and that she was falling off her chair all day at work (the GP didn't tell her to stay off work) and then she nearly crashed her car on leaving, a car in the state she was in she shouldn't have been driving.

She was only aware then when she read the leaflet what she had got (prozac apparently) and she said she thought it odd that the GP had told her that she would 'feel awful for several weeks' on taking them but 'had to continue' and that she'd be on them for at least 6mths.

I personally think that certain drugs like these maybe a quick fix but if it is a drug to say induce sleep then it's possible you can get addicted to using and then if it is perhaps working, when would one know when to stop. Back in the 1970s valium was being doled out like Smarties and my own mother who was having a bad time coping ended up with a short stay in hospital and came out with Ativan which she ended up addicted to.

I personally just couldn't take any drug like this as I'm one of these people who like to be in control of myself (prob why since growing up I've never got drunk that I wouldn't have known what I was doing). I refused even the gas and air when in labour with my children as especially with my 2nd child I wanted out of the hospital not long after his birth.

[Cristina_Romania]

According to the German Liver Patients Association's "PBC Newsletter":

The EMA (European Medicines Agency) has declared Modafinil as beind approved only for the treatment of narcolepsy (the only condition in which, according to the EMA, the benefits of Modafinil outweigh the risks and side effects). Though there were hypothesis and experiments showing some benefits against PBC lethargy, there has been proof of psychiatric complications, even skin problems, for which reasons Modafinil is officially not used anymore for either PBC or sleep apnee. Also, there were allegedly reported addiction or withdrawal symptoms. As such, according to this there is the recommendation for PBC patients on Modafinil to check the above with their doctor.

(According to EASL Clinical Practice Guidelines> Management of cholestatic liver diseases + EMA, Questions and answers on the review of medicines containing modafinil.)

I have wondered about this too, as the PBCF Compendium states "The agent that looks most promising at the moment is called Modafinil but more work needs to be done before its use can be recommended." (page 15).

Maybe Robert could explain this a little, please? Thanks.

[SC49 in reply to Cristina_Romania]

thanks for this Cristina - I am going off the idea of modafinal now. I think the side effects may outweigh the benefits

[Cristina_Romania]

You have to talk to your doctor, always. But I think it makes sense to be aware of the above.

Hopefully Robert from the PBCF will give some helpful input to this, but it's anyhow worth remembering there are several fatigue tips, regarding diet, lifestyle, sleep hygiene. I don't know what PBC fatigue is like, so you who suffer from it know best. But experts say there are ways to fight this - certain foods, with certain nutrients, appropriate sleep environment, energy management tips during the day.. There are some in the PBC Compendium , some that maybe your doctor knows, some that you can find elsewhere and work for PBC. At least that's what I have heard from quite a few doctors and patients :).

[SC49 in reply to Cristina_Romania]

thanks Cristina and Peridot

I have spoken to my doc. So far we have considered anaemia again (it's not anaemia), depression (so even though i wasn't convinced i took the anti depressants. The doc then agreed with me that it's not depression) and now it's chronic fatigue syndrome.

The first consultant I saw told me that the urso would sort out the tiredness and the brain fog within a few days (it didnt)

The next consultant said that the tiredness, brain fog and pain that I experience is not consistent with a diagnosis of pbc. The day i saw him i was too tired to argue with him. He also diagnosed chronic fatigue syndrome and prescribed amitriptyline and asked the doc to refer me to a cognitive behavioural therapist.

The consultant also said that he would refer me to a sleep clinic to rule out sleep apnoea.

The amitriptyline seems to have disrupted my sleeping even more! The cognitive behavioural therapy is interesting but, again, i am not convinced. The therapists first thought that I have 'social anxiety'.

The thing that irritates me is that all their interventions are settled around me having difficulty sleeping at night - I don't. I could sleep for Ireland. I have at least 8 hours sleep every night and I wake up pretty refreshed in the morning.

My problem is that by lunchtime, my battery has run flat and I need to sleep!

When i wake up again, i am refreshed but then my battery runs flat again about 6ish. Normally in the evening, I force myself to stay awake to make sure that I am tired at bed time. Sometimes I manage it. But even when I don't, I could still sleep the full 8 hours at night!!

It is a blooming nuisance but I suspect that I am just going to have to put up with it

[PBCRobert Partner]

As Cristina has alluded to, Modafinil is not without its difficulties. My awareness is that it is not routinely prescribed for PBC because of the side effects it has.

We would very much welcome a call from anyone affected by tiredness as we feel there are many things people can do to improve their own energy levels, and the weight of evidence, albeit anecdotal, from our members who have improved their energy is strong. There is much in the compendium re managing the fatigue: keeping hydrated, diet, sleep patterns and sleep hygiene, constructive use of energy, inducing endorphins, etc.

I would ask you, also, to consider the CBT. By looking at your associations between what the body does and how the brain sees it, which then affects the body, which then affects the brain, which then affects the body, round and round we go... We often get the opportunity to look at bad habits and/or atterns that we can then break.

Your approach to your fatigue and how you percieve it is also crucial.

I hope this helps,

Robert.

[SC49]

Thank you Robert.. I will get in touch with the Foundation - I've already had a look through the compendium and I have tried really hard to follow the guidance in it.

I started the CBT and have had 3 appointments so far. On his advice I am going to start doing more exercise in a more organised way. It hasn't worked up to now but I agreed that I would do it every day no matter how i feel and I'd keep a record of it.

I do understand the connections between thoughts emotions and actions - it's a general approach that I would use in work a lot. And i really do believe that CBT works a lot of the time. So contrary to what it might look like I am engaging with the whole idea as best I can.

[SC49]

ps .. with the agreement of the doctor, i stopped taking the amitriptyline. It was making me even fuzzier than usual. I couldn't think straight at all and sleeping wise it was doing nothing. I feel a bit more clear headed now and the sleeping is back to a more predictable pattern

[0mayna]

hi SC49.

I too, suffer from an extreme fatigue but no brain fog.

BUT I have been in touch by mail with someone suffering the exact same symptoms as you have ( fatigue after lunch time, problems of concentration, fatigue...) here is his post

forum.doctissimo.fr/sante/f...

It is in french.

It say that after taking a neuroleptic at low dose (0,5mg/day of ripseridone) his problems went away within 4 days.. Maybe you should try taking it/ speaking to it to your doctor!

Concerning modafinil, you can order it online (generic name modalert)

0mayna

[gerry1]

Hi there,

I have been taking Modafinil for about 4 months now and it has changed my life completely.....

for the good.

I suffer from fibromyalgia and my fatigue was just getting worse and worse!!! I started looking up what i could take for it cos i have small kids and a partner who also suffers from fibro and sllep was turnng its back on me. I used to love my sleep, but the fibro was stoppng me going into rem and i would feel refreshed after it. The dragging my body through the day was exausting in itself and my eye rolling fatigue was making me a sleep and when I would wake up I would feel like I was in a deep deep depression. So off I went to the doc and said ive looked it up and its what i would like to try, so i havnt had any side affects and i can get up and do things like take my kids to school and pick em up, i dont drive my partner does and off we go to the school and do food shopping and that is our social life for now and we accept it.

I take 2 tabs in the morning and I can go to sleep at night just the same as I used to , about 11,12 pm. and sometimes I can feel my tiredness and lethargy through them and just roll with it.

So try them, they are little rays of hope for me.

all the best

gerry