chronic fatigue

[shakira10]

Hia someone on here mentioned their GP pescribed Nuvigil ( of the label use ) for their chronic fatigue,however when i asked my Gp today for it he said its not on pescription ,im assuming its as im in the UK. The person who luckily was pescribed Nuvigil was from Alaska. I s their anything anyone has had that their Gp pescribes to help with their chronic fatigue?? I have another appointment on Wednesday .Many thanks x

[June9961]

Hi, I asked my consultant if there was anything I could get for the fatigue and was told unfortunately not. Just to rest when I could and listen to what my body was telling me.

[Hidden]

My consultant also informed me there was nothing he could prescribe for fatigue, I'm also reside in the UK.

[Sonia40]

I'm in the uk too, and unfortunately my consultant said there wasn't anything either x

[wendyh]

there is a trial going on for a drug called rituximab. it is mentioned in the bear facts newsletter from pbc foundation.you need to be able to visit Newcastle 10 times in a year. if interested in joining the trial contact [e-mail] or phone [phone]. i live too far away and have too many other commitments to take part

[CathieG in reply to wendyh]

I applied but unfortunately I am one of the 10% without some antibody which is needed for the trials.

[PCBnPBC]

Shakira10 - I cut this from NUVIGIL 's web site <<<may cause serious side effects including a serious rash or a serious allergic reaction that may affect parts of your body such as your liver or blood cells, and may result in hospitalization and be life-threatening>>>.This sounds like a serious contra indication for us lot! if anyone locates a cure or something that eases Chronic Fatigue I guess we would all know in a short space of time! and see wendyh's info above

[Hidden]

Hello Shakira.

I Googled this drug as I'm not aware of this and thought if you state it is available in another country (I'm UK too) then it might be in UK under generic or different trade name. I found it is generically known as armodafinil. The marketing name is Cephalon. It is actually a new drug but it is being used for bipolar.

I've much further but it was on the NICE site. So it might be an off the label drug as I noticed you stated. It's not on the NHS website so it is more than likely that it might not have gone to market here as yet or it is still in a trial state in UK.

I think most medications a doctor or even OTC an cause certain reactions in our system and some state that they can cause problems associated with what problems you have in the first place. (Urso for one can cause pruritis which we know as itching and with PBC and being an itcher I think perhaps the urso though improving the LFTs that could cause the itching to perhaps cease cause it so you don't feel much different!)

Personally I'd not actually want to go there with regards tablets for certain symptons unless they were a definite and with minor side-effects. I find with medications (and that has been my reason over the years for avoiding if possible) that there is always something that you can temporarily or continuously suffer as a side-effect as there are no guarantees there. A doctor will always tell a patient that the 'benefits outweigh the side-effects' which I find odd as at the end of the day it isn't that doctor at the time who is taking that medication.

I am fortunate, well I can't say it is permanent as you never know with PBC, but I only had fatigue for a short period of time prior and just after diagnose as mine vanished. I do get tired if not slept good the previous night due to waking up and then having the itch but I don't feel like I used to do with fatigue, it is a different thing.

Out of interest I posted on here about food and PBC yesterday and I have read the leaflet through now and can' help wondering if due to PBC and the fact our livers are compromised now, is it possible that it cannot store certain nutrients or do certain things that a normal one would now? I read about glycogen that the liver converts from carbs being stored in the liver to be released in times when we are active and needing energy, it is converted back to glucose, maybe then this bit is a bit dysfunctional now and plays a part in feeling fatigued.

[Hidden]

PS I have just noticed that on the NICE site regarding new drugs, before closing the window I just noticed that this drug has been 'discontinued' so it looks like it won't be available. That is for EU, UK and US it states.

[POZY]

I would like to know as well. I'm new to posting but gave been reading this for a couple weeks now. I get so far if u ed that I find myself sleeping at my desk and at lunch time taking naps on the office floor. No energy! I hope we find an answer

[SC49]

I am in Ireland and my gp has told me that there is nothing that he can prescribe for fatigue. So far I have been referred to Cognitive Behavioural Therapy and on Thursday I am seeing a counsellor. Personally I am not optimistic about counselling because I've no idea what it is I need it for. If it's to adjust to being tired, it's not going to be any use to me because all i want is to be fit for work. I don't understand how counselling will help with that.

[Hidden in reply to SC49]

Yes this is what I heard, fatigue is something we have to live with as well as having PBC. I was informed this back in early 2011 just after diagnose but for me the fatigue left me not long afterwards (wish the itch had too!) but I do know exactly how you all are who suffer this from how I was in 2010.

Thing is though fatigue is something that can occur in allsorts of condtions and illnesses so I think that is probably why it can be very much overlooked. I don't find many people understand, you simply get the comment, "Everyone gets tired" but I think with PBC it is far easier to get tired and also suffer fatigue than if there is nothing wrong with you.

For me I get tired due to lack of sleep most nights caused by the itch. I can drag myself out of bed early morning (6a.m. to 7) and then do come round but it starts to take its toll on me when it has gone 3p.m. Yesterday after only having just under 3hrs sleep early hours of Sunday and being awake from 3a.m., yesterday was quite bad come 3p.m. I was falling asleep shortly after tea around 6p.m. and had to move myself to keep going as I knew if I did fall asleep I'd not even manage at night and when you have the itch it's not worth the risk to me.

Here in England don't think being in winter now helps, I feel more sluggish this time of year than in the height of summer when we have lighter nights. Maybe one day someone will come up with some sort of magic whizz pill that will have us all zipping about like the Roadrunner and then we can get an adequate night's sleep to start all over again the next day.

[fluffpuff64]

Interesting to read all your coments, i battle with chronic fatigue on a daily basis, somtimes it comes on out the blue, like somone has pressed a button and i just cant keep awake.Its different than a normal tirdness and can be frustating at times, as it affects my concentration level,and i start to feel sick and ache as if i have the flu.Not ideal when your at work.I do take medcation for the nausea but it was be amazing if there was a drug to prevent tiredness.

Colleagues at work lack understanding, which brings me on to the point that am passionate about raising awarness of PBC.

I recently was refered to my doctor at work via occupational health department, as i had two weeks off following a bad flare up of my PBC. The doctor asked what was wrong with me, and started tapping it in his comuter and started reading a american website on PBC.I educated him and advised him to go to the PBC foundation website,which he did.He then asked me if i drunk alcohol.I was fuming to say the least, as ive never been a drinker and even if i had this is not the cause in the first place.His lack of understanding, compassion made me angry and sad.I gave him the leaflet on PBC that i had recieved from the foundation, which are brillant.

This whole experince has left me more determined to raise the awarness and profile ofPBC and for those who suffer it day to day.

Lucky for me i have a amazing partner who understands when i say am tired he encourages me to rest and fully understands.

I would be interested to know how you peeps are experincing others awarness of PBC.

All the best everyone, rest when you can

[Alaskanbutterfly in reply to fluffpuff64]

I take nuvigil for the fatigue its amazing also makes you not hungry at all he he he

[Merri087]

Hi I too suffer with chronic fatigue as well as itching...and it's amazing that drs outside of the hospital and my own gp know nothing about this disease. My consultant originally told me after a biopsy that I had PSC then a year later the said I had PBC then they were unsure am going back next week. In my case which ever I have the itching and fatigue are still bad but I must say whilst the creams and Urso help with the itching I would love help with the fatigue.

It so hard being bright one minute then like a zombie full of cold the next. Lately I have been suffering with aching almost painful joints...but not arthritis it seems which is good as I am not yet 50L lol

My line managers don't ynbderstand my illness nor do they appear to want too...they treat me as though it is my fault that I am unwell and my illness is a burden on the department...working there has made me feel unwelcome in a place I have worked for almost 25 years. I was seeing the works doctors who at first didn't know or understand but he went away and researched it...just as I was getting support his company moved him and there is a new dr...her view is I should think about stopping work! Places of employment need to make the effort to understand illnesses that are not common.....

[Alaskanbutterfly]

I take nuvigil for the fatigue its amazing also makes you not hungry at all he he he

[clau]

Peridoto,

Someone this Forum recommended a remedy for itchy, called in Brazil Zirtec, generic cetirizine.

Very good, does not sleep.

Why do not you try?

Good weekend.

Cláu

[Pat_H]

Shakira10

I have absolutely no idea if what I'm about to type has any validity to it, but anyway I'll go ahead and you can ignore it as you think fit.

Although I get tired as a result of not sleeping well (frequently wake-up every hour with itching), I don't get chronic fatigue, which I think may be due to the fact that I exercise every day - e.g. organised walks and Tai Chi, and that I take CoEnzymeQ10 tablets 75mg.

Pat_H