Itraconazole.

[Mavary]

is anybody having problems with Itraconazole. I first found I had Aspergillosis after a bout of pneumonia. I went into hospital for a couple of days. I kept telling the Drs I couldn’t breathe first thing in the morning after I returned home. They didn’t really acknowledge it until one morning I passed out. The Dr sent me back into hospital where they found I had Aspergillosis. I had a problem last year when I was cut down on them. I ended up needing steroids. I’m now on my last two tablets so I just hope I’m going to be ok without them. Apparently it’s a manufactures problem. It is a bit worrying. Is anyone else having the same problem. I’ve phoned the Dr, I phoned my Pharmacist and I phoned the hospital as it was them that had prescribed them. I said to the Secretary in the hospital that I felt I was banging my head as nobody seemed to be listening. I was hoping the hospital would get back to me with an alternative but have heard nothing.

[Izb1]

Oh my word Mavary what a worry for you and the fact that nobody is helping you with this problem is frustrating. I am sure they could offer you an alternative to use for the moment. Go back to your gp and insist. Its terrible that we have to fight for everything nowadays, dont give up. Goud luck x

[Mavary in reply to Izb1]

Hi I’ve been passed to the Consultant. I’m on the last tablets today.

A Lovely Consultant rang me this morning so they ere taking notice. I don’t know if she’s a junior one for the Consultant. She said to stop the tablets and if I’ve got problems they can put me on another one. The Consultant was going to cut me down to one in April anyway and see how I was. But they are going to stop two just like that. I’m hoping I will be ok. I’ve got to have a blood test. She is going to send me the paperwork for it. It will show the state of my eosinophils as I start and then the Consultant wants another before I see him in April.

[Izb1 in reply to Mavary]

This is good news Mavary at least they are taking notice and will be able to offer a substitute x

[Mavary in reply to Izb1]

Well maybe, after I’ve gone without . I hope I don’t need them any more but it does worry me I could go backwards.

[Jacmidlands in reply to Mavary]

Only a hospital consultant can prescribe anti fungals, not a GP and there is a shortage of Itraconazole at the moment. I was on it for six weeks but it affected my liver and I had to stop straight away. Having regular blood tests is essential.

If you are on Facebook there are some very good Aspergillosis groups so try searching for Aspergillosis Support. You will need to join the group or groups since they are not public.

[Nula2]

Hi Mavary, I have bronchiectasis & recurring aspergillosis. Not on any meds for Aspergillosis at moment but was on Itraconazole once and I know there is an alternative because I couldn't get on with Itraconazole and they gave me an alternative. So sorry I can't remember the name of it. (I seem to remember it's more expensive which is why they try Itraconazole first). I hope you get some help 🤞. Take care xxxx

[Mavary in reply to Nula2]

Hi I’ve been fine on it. They had a similar problem last year. They tried to cut me down on them but I was getting I couldn’t breathe in the mornings again. I phoned the surgery and said I needed steroids. I had a bit of a tussle with the practice nurse but I said that’s what I had before. She looked at my notes and said oh yes I see. She then gave me them. I think sometimes we know our bodies best.

[Nula2 in reply to Mavary]

Yes think we do and unfortunately sometimes you have to fight for your rights. Hope you get sorted - everything crossed for you 🤞🤞xxx

[Mavary in reply to Nula2]

Thank you. Xxx

[janedivney]

Itraconazole supplies have been on-off for a while now. I’ve been lucky so far. There are several alternatives though ie voriconazole, posaconazole, which your gp should be able to prescribe. I’m on them permanently, but lots of people only take them for 6months or so & then go into remission. Your gp could do a blood test to determine whether you really need them or not

[Mavary in reply to janedivney]

I’ve been lucky till now. The Consultant wants me off them I think. I’m quite happy for that if I’ve got no problems for it.

[janedivney in reply to Mavary]

Let’s hope you can get off them. We’re told they’re not good for us but it’s better than the lung damage which aspergillosis can cause. I started about 12 years ago, have had two remissions of about 2years each but now permanent. In fact in the last year I’ve had two lots of intravenous antifungals too 🤪

[Mavary in reply to janedivney]

That’s pretty scary. My breathing isn’t good anyway because I’ve had seven spinal fractures so I’ve got a hump on my back. So my chest is a bit cramped.

[janedivney in reply to Mavary]

Seven?! That’s terrible. No wonder your lungs are cramped, you poor lady. Have you got osteoporosis?

[Mavary in reply to janedivney]

Yes severe.

[simplesprout]

I'm on daily 100mg dose of itraconazole as part of my post transplant meds. I'm located in the North West and as yet not had a problem with supply.

[Mavary in reply to simplesprout]

I’m in the Southwest and this is the second time I’ve had a problem getting them.

[maggy12]

Posaconazole is another antifungal it worked better than itraconazol for me, but its very expensive for the hospital to prescribe

[Mavary in reply to maggy12]

They aren’t offering me an alternative. They want to see how I do without them. So it’s wait and see.

[maggy12 in reply to Mavary]

See how you go but if you get symptoms go back & report them

[Mavary in reply to maggy12]

I will do! I wouldn’t leave it. The first time I had problems I was telling the Drs that I couldn’t breathe when I first woke up. They ignored me then one morning I was sat on the loo, inhalers in my hand and the next thing I knew was I had my hands on the shower next to the loo and the inhaler and top dropped out of my hands. I think I fainted for a minute or so. I was sent back in hospital where they found my eosinophils were really high. It was going that way last year and I was getting up in the morning and not able to breathe very well. I had a fight with the practice nurse but I did get some steroids I then went back on the Itraconazole. So you see why I’m a bit concerned. It would be nice if I can do without them.

[maggy12 in reply to Mavary]

I have emergency steroids & abs, I was on posaconazole but when the prof left who prescribed it. the new Drs stopped it.

[Mavary in reply to maggy12]

This is new ones that have stopped mine. I’ve just got to hope for the best. I know they will give me something if I really need it so it’s now wait and see.

[maggy12 in reply to Mavary]

All best wishes for the future Mavary.

[Mavary in reply to maggy12]

Thank you.

[Alberta56]

So sorry you've fallen victim to this shortage. I hope your doctor will prescribe an alternative. 🤞🤞🤞 xxx

[Mavary in reply to Alberta56]

Me too.

[watergazer]

Hope you get an alternative med mavary. X

[Mavary in reply to watergazer]

Thank you.

[Souhada1]

I could not tolerate itraconazole at all but responded quite well when switched to Posaconazole.

[Biker88]

Itraconazole tablets do seem to be rather erratic in supply, there is a liquid version which doesn’t seem to be affected. The alternatives Voriconazole and Posiconazole are only available from consultants prescription and at hospital pharmacy. If you haven’t found them, there is lots of info on Aspergillosis.org and Aspergillosistrust.org and the FB groups have a lot of info National Aspergillosis Centre Support and Aspergillosis Trust Support.

[Mavary in reply to Biker88]

I had the liquid and it gave me really bad bowel pains. I’ve had my sigmoid colon removed and I’ve still got Diverticular disease which is probably why I couldn’t take the liquid. It’s a shame because I think I’ve still got the bottle full.