ITRACONAZOLE

[freefaller]

Hello everyone,

Just been to the Aspergillosis clinic today and have had a few more blood tests. Asked a few questions and got the answers. Have been put on Itraconazole tablets. Then went for an afternoon out with the daughter of an old friend and work colleague. By the time we got back to the hotel this evening and checked the tablets I find I have the type they say in the literature I was given at the clinic this morning that I would not be given? They said I would be given Sporanox which comes as either a liquid or a pink and blue capsule. It states specifically that this is what I would be given at the centre. It goes on to say that there is another make "Sandoz" which are green capsules. Also says if you are given this by my GP to tell the clinic team know as a change in brand may alter the blood levels of Itraconazole. I have taken the first dose this evening and will take another dose tomorrow morning and see if the pharmacy in the hospital is open tomorrow to see if this is OK. I have also sent an e mail asking about this as if the pharmacy is not open tomorrow morning I will continue to take the tablets until I can contact someone. I think it is OK and only a problem if you change brands? What do you think?

Another great thing today is that the clinic had not received my biopsy slides -thankfully they are satisfied from the blood and sputum tests they have run that this is an aspergillus nodule and I have Chronic pulmonary aspergillosis. Also the fax with the results of the sputum sample which I asked to be urgently sent there - which would have been done yesterday afternoon had not got to the centre either! I wonder if by the time I call my surgery on Monday whether the hard copy of the last letter will have been received by my surgery - better still will the fax have come through. Can't wait to find out!

Sian

Xoxoxoxoxoxoxox

[Hidden]

OMG Sounds complicated. Good Luck K

[Billiejean_2]

Hope you get the issue of which anti-fungal you should be taking sorted soon. But you must be pleased that they're not prescribing huge amounts of steroids along with the anti-fungals. I had two positive tests for Aspergillis back in April but after blood tests and a scan was told it wasn't in my lungs. Since then I've had Moraxella and now Pseudomonas. Have no clue what's going on down there at present.

[freefaller in reply to Billiejean_2]

Oh my goodness Billiejean! Have been feeling better since Wednesday on the coughing front. Still have the harsh, hacking dry cough but no sore throat so not dosing up with covonia and gargling with soluble paracetamol. I am beginning to think that this may have been caused by my flu jab. As it has cleared so quickly. Glad I am on something which should work - so long as I don't get the bad side effects.

[grannyjan]

Hi Sian, glad they have finally started you on meds, I couldn't take itraconazole. but hopefully they will be good for you and maybe you will get some relief now.

jan x

[Annieosb]

Hi Sian,

I tested positive in 2009 for aspergillus and it was ignored by a respiratory consultant, (he could not see the significance of aspergillus antibodies) my health deteriorated and in 2014 (after being treated like a hypochondriac by my GP) and the BLF nurse (Thank you BLF) gave me details of the aspergillosis centre in Manchester. I have been attending this centre at Wythenshawe hospital for 6 months now and I have been thoroughly scanned, x-rayed, tested in a whole manner of ways and finally after consultations with Prof David Denning and Prof Jorgen Vesbo (both absolute stars together with the staff at the centre-what an example of teamwork in this day and age in NHS) , I have finally got treatment that is actually helping me.

So, if you are not happy with any aspect of your treatment ask your GP to refer you to Manchester. Good Luck and thank you all at BLF.

Annie

[Northern-soul]

Hi Sian,

I was on itraconazole several years ago but eventually had to stop taking them as they caused my liver function tests to raise significantly. They also caused significant oedema. However during the time that I did take them my condition did improve slightly. I am not sure regarding the different brands but I am sure that if you ring the aspergillosis nurses at UHSM they will be able to help you.

Good luck with them, I do hope that they help you.

Carolyn

[Hidden]

I am on itraconazole and always have the Sporanox brand (blue & pink capsules). Been on them about 3 years, never had any problems. If you have gastric reflux and are on tablets to suppress stomach acid, you must take them with a glass of coca cola. Robin

[sassy59]

Good luck to you Sian and keep taking the tablets until you are told otherwise. xxxxx

[Colours23]

Did u get this done privately? As I think the NHS wouldn't bother!!

[freefaller]

Colours23. I asked my consultant to refer me to UHSM. As it is the only centre of excellence in the whole of the U.K. even I could get referred there on the NHS even though the NHS is devolved in Wales.

[freefaller]

Forgot to go back to the hospital pharmacy at UHSM this morning as in go home mode! After all it is a 6 hour journey. Got past Chester before I remembered we were meant to be going back to check on the tablets. Anyway I suppose the Docs wouldn't be there and I did e mail the centre last evening. Wash shocked when I saw they had given me the green capsules just didn't think to check in the hospital before we left as I thought their own pharmacy would only dispense the blue and pink ones! Ah Ellen just goes to show you should never presume but always check.

Sian

Xoxoxo

[SquirrelsHolt]

Freefaller, I was reading a post of yours some 8months ago regarding the medicine called ITRACONAZOLE. You also mentioned SPORANOX CAPS (pink & blue capsules). I'm enquiring as my son has been prescribed these for a skin complaint,sort of shaded dark patches on his chest area. Only comes up when the weather is hot but he finds it embarrassing to go without his shirt on. I just wondered, did the medication work for you? Appreciate any reply.

[freefaller in reply to SquirrelsHolt]

Sorry been unable to get on here since we came back from holiday and for some reason this morning could get back in again - don't know why but it worked! The Itraconazole worked for me but it was for Aspergillosis and an aspergillus nodule in my left lung. At my last X ray the nodule had shrunk and my Igg and Ige levels had gone down. Have another X Ray on July 22. As I had only been on the Itraconazole for 4 months the specialist was impressed and thinks that with such a good result so early the nodule is likely to go altogether. Hope this works for your son. It is good stuff but am told for other conditions it can take a longer time to work.

Sian

[SquirrelsHolt in reply to freefaller]

Many thanks for your reply. Everyones been experiencing problems with HU site at the moment. Hope your X ray on 22 July shows yet further improvement. Stay well.

[freefaller in reply to SquirrelsHolt]

Thanks. I am quite confident it will.

How is your son doing?

Sian

[SquirrelsHolt in reply to freefaller]

We are due at doctors at t the end of the week,so fingers crossed. Take care.

[freefaller]

Ah hope the appointment goes well.