Modafinil ( pro vigil): After suffering for... - PBC Foundation

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Modafinil ( pro vigil)

Kieraferret profile image
27 Replies

After suffering for the last 2 years with chronic fatigue , my gastro today has put me on a trial with provigil for 3 months, hopefully it will make a difference I will keep you posted x

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Kieraferret profile image
Kieraferret
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27 Replies
Michelle2015 profile image
Michelle2015

Hi, I would be interested to hear how you get on as I am fatigued all the time for the best part of a year

Kieraferret profile image
Kieraferret in reply to Michelle2015

Same if I could just get rid of tiredness I'll be fine , I'll keep reporting on here and let you know if they make a difference x

Zelda5 profile image
Zelda5

My Dr. gave me a months sample of Nuvigil. I haven't tried it yet, because I've read it interacts with medicine that I already take and I want to wean off that before I try it. I think it's in the same class of drugs or very similar to Provigil. I've also been hesitant to take it too, because he wants to do blood work after I've taken it for a month, so that tells me he probably wants to see how it effects the liver. I don't know if I want to take anything that could be hard on the liver, and I also worried it would make me nervous and jittery. I'm probably overthinking things. Did your Dr. want to blood test you after you finish your trial of the drug? I would be very interested in hearing how it works for you, good luck with it and I hope it works well for you.

Kieraferret profile image
Kieraferret in reply to Zelda5

Thank you I'm very willing to give it a try, yes I'm to have blood tests after 3 months x

mojo62 profile image
mojo62

I would also be interested to hear how it goes. I had to stop work in November due to the fatigue. Currently trying to get ill health retirement but feel as if those assessing me don't really believe how bad the fatigue is. Hope it works well for you. x

Rowskisgran profile image
Rowskisgran in reply to mojo62

HI mojo62, I had to take early retirement on health grounds because of my fatigue related to PBC. I take Modafinil and it is a wonder drug. I have been on it for over two years and I can't tell you the improvement. The people assessing me were the same, but keep fighting. Are you familiar with the PBC Foundation in Edinburgh? They are great with advice for dealing with sceptic people. Good Luck

SuzCurran profile image
SuzCurran

I am really looking forward to hearing how you get on! Im plagued with chronic fatigue, kinda takes over my life :( x

CathieG profile image
CathieG

This is something I need to be asking my consultant for. I like Mojo62 have been off work since December and trying to get ill health retirement, I work in a stressful job local government. This has taken over my life and I am a totally different person. Good luck and m interested to hear the result.

Kieraferret profile image
Kieraferret in reply to CathieG

Fingers crossed they make a difference first day today x

mojo62 profile image
mojo62 in reply to CathieG

Hi Cathie. Am I correct in assuming you are in the UK? I have been referred by my employer to occupational health with a view to ill health retirement but although I also have extensive cirrhosis they are very vague as to whether I will be eligible.

CathieG profile image
CathieG in reply to mojo62

Who do you work for? I would be really surprised if you don't get it. Thankfully I am still at stage 1 but have had this for 4 years before being diagnosed via a biopsy. Employee healthcare are supporting my application with support from St James hospital. Another thing in my favour is that I am 62, only 3 years left to retirement. I won't know the outcome for another 6 weeks but my Union rep sees no problem. I have been off since December and my fatigue is bad.

Rowskisgran profile image
Rowskisgran in reply to mojo62

HI mojo 62, me again. PBC comes under the Disability umbrella, and as such you ARE eligible...xx

Rowskisgran profile image
Rowskisgran in reply to CathieG

Hi Cathie G, check my reply to Mojo62, I also worked in Local Government, and got early retirement 2 years ago. Good luck

spoul profile image
spoul

I tried it 5 years ago and put my blood pressure up to had to stop........good luck 😃

Calogia profile image
Calogia

Kieraferret - I have been taking provigil since January. I would say 4 days of the week it's amazing, the other threee are good just not as good. Without it I would not be able to work. I am Stage 4 and consider it a wonder drug.

Good luck!

Kieraferret profile image
Kieraferret in reply to Calogia

That's encouraging to here, let's hope I get the same response Thanks x

Kieraferret profile image
Kieraferret

What time of day do you take it ? X

Calogia profile image
Calogia in reply to Kieraferret

I take it at 8:00 a.m. or else it doesn't seem to work as well.

Kieraferret profile image
Kieraferret in reply to Calogia

Thanks , I'll try that too x

Loopyblue profile image
Loopyblue

Hi . I ve also struggled with the fatigue for ten years now . I would be very interested to hear how you get on. Good luck with the trial .

Kieraferret profile image
Kieraferret in reply to Loopyblue

Thanks I've been on it a week now fingers crossed I would say the fatigue has improved 70 percent but it's early days yet and I don't want to jinx it lol x

Calogia profile image
Calogia in reply to Kieraferret

K - how many milligrams are you on?

Kieraferret profile image
Kieraferret

100mg once a day. You.?

Jaycee profile image
Jaycee

I have not heard of this drug, are you in the UK?

Kieraferret profile image
Kieraferret

Yes I am , it is a drug for treating narcolepsy .

flora profile image
flora

Hi all my consultant has given me a two month supply of modafinil. This is only my fourth day , I thought I would feel more alert and awake but so far I have to say a wee bit disappointing only on 100mg.i will give it some more time, maybe it gets better after awhile. I was ready to try anything I felt my life was on a downward spiral due to fatigue all I did was sleep and work. I hope this drug helps, I had to practically beg for it .

Kieraferret profile image
Kieraferret in reply to flora

Hi Flora I've been on modafinil since the 4th of June like you I've been put on a 3 months trial , although the medication doesn't cure the fatigue I can honestly say it's helped . I would say probably by roughly 40 percent which might not sound a lot but it gives me sometimes 4 out of 7 good days. And if you suffer chronic fatigue that is really good .but on the other hand I.have been signed off work for 7 weeks for a knee operation which is almost the whole time I've been on this trial and I don't know if you are the same but my fatigue is worsened by stress so is it the modafinil or is it the fact that I've been off work? I'm back at work now and I'm back to see the the gastro on the 2nd of September so we shall see .

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least. 4 really good days and boy does that make a difference hope this helps x