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Itraconazole and sleeping? That should be not sleeping.

freefaller profile image
18 Replies

Hello,

Since starting on Itraconazole a month ago have been sleeping less and less. Anyone else found this? Up at 5 most mornings and then yesterday up at 3 now up at 1.30 this morning. Could it be the way Itraconazole reacts with flixotide and sere vent inhalers? Waiting for letter from Wythenshawe stating what inhaler I should be out on. Went to Doc to tell him what was said and he sort of lost it and changed inhaler back to one I was having 10 years ago. Which the consultant said I should have been put back on 5 years ago. Only found out this when I got copies of the letters a few months ago but nothing was done by my GP at that time. The consultant did say at that time to take only half the dose of the flixotide inhaler if the new inhaler didn't work but again I did this anyway as he said thinking the GP would change or monitor me on the half dose which would be the same as the combined inhaler but it never seemed to get through to my GP even though he had the letter. I thought it as just laziness that they hadn't changed the dose on the repeat prescription but now I wonder if they read the letter at all. Oh yes they must have because they blamed everything on my Bronchiectasis which was diagnosed at that time!

Sorry for the ramble.

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18 Replies
Sheilab123 profile image
Sheilab123

No advice, sorry! But do know about the 1a.m. 3.a.m. etc, a real pain in the butt. Think it's then that we let our imaginations run riot, not a good thing! xx

veg58 profile image
veg58

Hi, I am on itraconazole as well. I would be surprised if there is any interaction with the inhalers. Perhaps it is a direct reaction to the itraconazole but I have not had this. Hope it sorts itself out!

telephonejunkie profile image
telephonejunkie in reply to veg58

I agree with Veg, there should not be any systemic interaction. The amount of Flixotide in your blood,from your inhaler whether orange or purple should be negligible. However one of the side effects from itraconazole is "inability to sleep unless sitting upright". It sounds like the Itraconazole its self. Go back and ask about the lack of sleep, but write down before you go how long it has been going on , how it now makes you feel as we often forget things when we are tired.

freefaller profile image
freefaller in reply to telephonejunkie

Ah. I didn't sleep upright in the chair earlier but did when I went back to bed. I have just bought some good square pillows to keep me more upright in bed. Being brand new they smell a little so have them airing in the spare room. Have also ordered some quilted pillow protectors for them and waiting for those to be delivered before using them. It is supposed to get brighter here later so may peg them out on the clothes line to air them quicker. It is only since Sunday that I have found sleeping uprig seems to be better. As I said drifted off in the chair but for less than an hour, lovely feeling felt like I was floating out of my body then the dream came and I wa sin a car speeding past people standing with their backs to me in the road - they were so close to us and we were going so en I woke up. Not frightening in itself but you know how it is with dreams you wake with your heart pounding and that is it. Once when I had flu I dreamt I was a daisy pushing up through the dark earth each time I pounded against the earth was my heart pounding. Not frightening and caused by sharp peak in temperature but wow I felt scared.

Funny things our bodies and minds? Funny thing us humans eh?

freefaller profile image
freefaller in reply to veg58

Thanks.

Ergendl profile image
Ergendl

What a mess, Freefaller. Hope you feel better with the change of meds despite the early mornings.

freefaller profile image
freefaller in reply to Ergendl

Thanks. For the first day this week I have nothing on. Well nithing I have to go out and do so will call Docs surgery and make an appointment to see one of my favourite Docs. Wonder if they have my letter from Wythenshawe yet?

Sand64 profile image
Sand64

Hi..l'm Sandy by the way & have Bronchiectasis & Cavitational Aspergillosis..I have been taking Itraconazole since Feb.this year...200 mg twice daily, but l recently cut them down to 100 mg twice daily..l also have used Symbicort for a few years..I cut down Itraconazole because it has bad side effects, ,& taking with antibiotics makes it stronger !! l cannot sleep properly..waking every couple hours, plus bones ache & bad leg aches wake me up..getting continual headaches & hair loss..Have been admitted to Royal Brompton for two weeks I.v Antibiotics & another anti fungal every 8 weeks (3 times between Feb & July) to try stabilise Aspergillosis..first time l felt amazing on discharge...but last time felt no better & very breathless since..l have had 3 chest infections in past 6 weeks..My GP is not familiar with my illness & not much help..l really do not know what to do anymore !! I hope you get more help than l seem to & good luck...S x

freefaller profile image
freefaller in reply to Sand64

Hi Sandy,

Not really noticed anything else just this sleep thing. As I said up until Sunday I could fall asleep easily once I got to bed where I used to be awake for a couple of hours before I dozed off but then would sleep though till at least 7. But been waking up earlier and earlier. Sometimes it has been OKas I have been asleep around or even before 10 and waking at 5 to 5.30 was not too bad but that has just got earlier and earlier.

I am interested that you say you have cavitational aspergillosis. I had what they first thought was an Aspergilloma in my left lung - about 2cm around. First reported as a cavitating tumour. When I got to Wythenshawe they named it as an aspergillus nodule and then at my 2nd visit earlier this month said it was Chronic Pulmonary Aspergillosis. I also have Haemophillus Influenzae Bacteria (HIB) and seemed to be colonised with it but not on antibiotics for it so sputum and gunk from nose still a lovely bright green. My GP doesn't want to do anything about it as he thinks it is also because of the Itraconazole and that will be turning stuff out of my lungs but I am not sure. He is a plonker anyway so at 2 will make an appointment with one of my favourite Docs. The HIB was found back in March but no one did anything about it until June when I finally got hold of the consultants letters mentioning it and asked about it! So two consultants and all the Docs I had seen since March about 6 in all didn't think it worth putting me on the antibiotics mentioned in the sputum test. Feel like I have had this for ages but everyone blamed it on Bronchectasis as if I should always have bright green lumpy sputum because of mild Bronchiectasis.

Nice talking to you Sandy

Sian

Xoxoxo

Sand64 profile image
Sand64

Hi again Sian..

I have severe Bronchiectasis top lobe of both lungs & less than 65% working in rest of lungs, plus the Cavitational Aspergillosis is in new cavity in left lung, but l,m definitely getting worse & now heart problem ? Hypertension

I just got appointment for Nov 9th to go to Oncology Dept at Maidstone Hospital to have Nuclear injection into heart & scan..first is to make heart speed up & may have to have another on resting few days after ? So extra breathlessness may have something to do with that ? I am deaf too..caused by meds Vancmycin (4 wks i.v 12 yrs ago) for severe double pneumonia..almost died but meds made me deaf..was in coma for a month.woke paralysed from neck down caused by Guillain Barre Syndrome.had to learn to move again & walk etc....but l lived to develop Bronchiectasis 4 yrs later & more recently this !!!

I had to miss some hosp appts..for a year 3 yrs ago as partner had cancer (he died after 12 months) But it took another year to get a appointment with my consultant at local hosp again !! That's when developed another cavity & eventually (long story) got referred to the Royal Brompton..under Proff Wilson & Michael Loebinger..but Aspergillosis so rare not enough known about how to treat...Only 540 people in world on website & most in US l think ?

HIB sounds nasty too, but Itraconazole is nasty drug..l had allergic reaction to Voriconazole which they say is best one ! Fed up with lack of sleep tho..l go to bed very late but still wake after couple hours...4 hours is most time slept in months..l now have cough, but never been able to do sputums..makes me feel sick..but do taste blood ?? I use a nebuliser sometimes, but think l should do it more than l have been..

Thanks for chat & hope your luckier than me with meds..if u get something that helps sleep..let me know. (I take mild zopiclone sleep pill too) no help !!

Sandy xx

in reply to Sand64

Hi Sian & Sandy. Oh my god what a time you're both having. I was on itraconazole for quite a few years and tolerated it well. Don't sleep well anyway. I have the much milder & more common form of aspergillosis, ABPA, not an invasive form.

Could it affect you worse because of interaction with other drugs? My bronchiectasis is classed as severe as it's widespread in 3 lower lobes & I have pseudomonas, but my breathing is actually quite good, so I call it moderate. It hasn't reached the 2 upper lobes yet & I work hard on my physio to try & keep it that way!

Sandy I'm under the same team as you at the Brompton, excellent. It sounds like you BOTH need better gps.

freefaller profile image
freefaller in reply to

There you go once they knew I had a nodule no go here with the physio. I have moderate Bronchiectasis in the lower lobes of both lungs and asthma. I didn't realise my surgery was really so bad until I realised they had blamed everything on the Bronchiectasis and never did sputum samples I have probably had HIB for years.

in reply to freefaller

Sorry Sian I didn't know you had a nodule. Is it non-malignant? I didn't realise you couldn't do physio with a nodule. Why does that affect it, it's only a different way of breathing. So, are you in the position of trying to clear your lungs but without doing some physio? That must be impossible. Sorry for the questions, just trying to get to know about you.

freefaller profile image
freefaller

Can't get an appointment until next Wednesday and then I go to Wythenshawe on Thursday for Friday appointment.

Have had a few hours sleep this afternoon thankfully.

You really have had a few years of heartache and illness haven't you. My goodness. So very sorry to hear about your partner.

My sister -in-law to be had an allergic reaction to IV Vancamycin which she was given in hospital when she had an ileostomy due to colitis. They also did not clean out the remnants of the bowel left inside her and she almost died quite a few times got MRSA and c.diff. The wound site was a mess and her abdomen is permanently disfigured from having operation after operation to try and clear the infection. Now she cannot balance correctly because of the damage from the vancomycin. Then the hospital told her she had not been given IV antibiotics even though we had visited her and asked them what they were putting into the line - antibiotics they said. Then miraculously her notes were lost! I know she is lucky to be alive as are we all and sometimes we don't get any help. Frightening. Thankfully a nurse just suddenly thought I know what they may (not) have done and at least the infection from the stump of the bowel was cleared. So it seems true what they say "Be kind to Nurses, they stop Doctors from killing you"

Amazing how so many things can go wrong with one single operation.

Well now that has cheered us all up I am off to have my dinner and another dose of Itrwconazole in about half an hour and see what tonight brings. Will take herbal sleepers at 9 tonight and let you know how things go.

Take care of yourself.

Love and hugs

Sian

Xoxoxoxo

Ergendl profile image
Ergendl in reply to freefaller

Hope you slept a little better last night. What an awful experience your sister-in-law had, Freefaller. And Sandy, what an awful few years you have had too. True about the nurses.

Sand64 profile image
Sand64

Hi Ladies..nice to hear back from you, although your problems seem worse than mine..Sian, your poor sister in law, what a terrible ordeal ! I was in coma when had Vancmycin I.v into spine, l also had septacemia but not had anything explained about that? Long story.. but hospitals do mess up, l think there is a lot of conflicting info given to you by different Drs or nurses & makes you feel like your going mad..l do mis hear especially if they have accents, but feel they could make things clearer sometimes as l have no one listening for me anymore!! I am going through 3 rd chest infection in 6 wks & l am just using Amoxicillin l keep on standby as GP does'nt know what to give me..l,m sure it's same infection just not clearing up as wrong treatment given last time (clarythromicin) ? Breathing is worst ever, like have windpipe full of cotton wool !! plus got a cough now, but l think that's good sign..Palpatations are very bad, that's another side effect of Itracanazole although could be the heart problem ?? Confused & scared, but only other option is going to A&E at local Pembury Hosp & last time was sent there by GP emergency, but still waited over 2 hours as he had'nt phoned ahead ? Was there 7 hrs in all..to be told l have chest infection which l already knew.!! I had phone call few days later to say appt booked for me at chest pain clinic to have treadmill test with ECG..2 days later..l went but they would'nt do it as my BP was too high & breathless, not well enough !! Wasted journey, but they referred me to cardiology via my GP again & took weeks to get appt through for heart scan next wk with nuclear injection! Maybe that may get some results? Hope l can understand them clearly this time ?

Well l hope you all have as good a weekend as possible & the herbal sleepers help..Zopiclone l have been told can take two, but still wake up & feel groggy all next day ..so gave up on that !

Love to all

Sandy xx

freefaller profile image
freefaller

My sister-in-law's experiences were more, longer and more varied than I mentioned above. We eventually had to write to our MPs and the Minister for Health at the time. Of them all our local MP about 200 miles from where Elaine lives was more help than either her MP (of duck house fame) or the Minister for Health.

freefaller profile image
freefaller

He'll Sand64. And all us night owls.

Pleased to report that the "Sleep Aid" tablets have worked. The second night I took them did not have the "hang over" they do not give me a dry mouth as some other sleepers do. Gave them a miss last night and was asleep early woke once at 3 but straight back off and awake at my usual time of 5.45. This is a time I often wake as am used to that time from working. While I have been ill over the summer missed it and as I said before had to set an alarm to take anti b's at 6am. Anyway feel good now. Having a good night makes such a difference to life.

Love and hugs

Sian

Xoxoxox

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