Posaconazole and vertigo

[Bloom]

Hi everyone,

I have aspergillosis which may be preventing me from achieving remission. They found this is in a lung mass removed by wedge resection in Nov 2013. I eventually started treatment for Wegener's in December 2014, although the surgeon said this was what the lung mass was in 2013.

Eight doses of IV Cyclophosphamide, methotrexate and prednisolone later when the wegs seemed to be getting worse, lots of haemoptysis, new stuff in CT scan, possible signs of infection, lots of antibiotics etc, a bronchoscopy showed I had heavy growth of aspergillus and candida. The bronchoscopy was supposed to exclude infection before starting rituximab, so that's no longer an option I guess :sad:

The mycologist I saw prescribed itraconazole, after 9 days on it, I had bone pain, ectopic beats and dizziness. He has now prescribed posaconazole which is again making me a bit dizzy. I am flying to Australia with my daughter and granddaughter next Tuesday from the UK to be with my other daughter and kids for Christmas. The medics are not happy about this, but accept my reasons for going, (before they diagnosed aspergillosis I felt that I wanted to go and see them again while I still could)

I have had vertigo in the past which I'm sure was wegs related. In January 2014 after the lung surgery, but before I started treatment, I went to Australia and had a really bad episode of vertigo immediately after the flight home. I was prescribed cinnarizine for the vertigo when it first happened in 2011 and it's pretty effective. As the posaconazole is making me feel dizzy, I hoped to prevent another episode of vertigo particularly on such a long flight. I can't get health insurance currently. Looking online there's lots of drug interactions with posaconazole, some of them antihistamines, but not specifically naming cinnarizine. Has anyone else had experience of this?

Best Wishes

Bloom

[Birdie]

Has anyone else had experience of this?

Your circumstances are far different than mine, so sorry but no real help from me. I can say that it's encouraging how well you seem to understand the situation, which means you're likely to find your own solution. Keep at it.

[Bloom]

Thanks Birdie, part of my defence is to intellectualise this but it doesn't always work! I wanted to go to Australia to see my grandkids because I felt I might not see them again as my illness seemed unstoppable.
The treatment for aspergillosis, posaconazole, for me is unpleasant. It is really affecting my gut and contributing to my fatigue and it is making my peripheral neuropathy worse. It seems that every treatment gives you a new set of symptoms to cope with!
I don't like flying, and I'm scared I'll become really unwell on the flight, but I so want to get there. I might just skip the posaconazole for a couple of doses, before and during flying but I know that'll jeopardise my recovery from aspergillosis.

Bloom

[annekat]

Vertigo is always upsetting, whether caused by drugs, diseases, various inner ear disturbances or irregularities. Enough of us with Wegs have had it and feel that our dumb disease itself is one of the causes somehow. Yet no doctor seems to be able to say exactly why this would be the case, except that many of us do have ear involvement that could affect the inner ear. I saw one research study indicatiing a possible autoimmune problem occurring in the ear which could cause this. Like maybe there could be granulomas in the inner ear. But it was not conclusive or definite enough to list WG as an absolute cause for vertigo. I have vertigo and recently had a bad attack. It's been suggested that I could have Meniere's syndrome. But nothing has been determined. Many in the general disease-free population have vertigo and docs can't seem to tell them why, beyond the possibility of BBPV and the exercises available for it. I haven't taken the drugs you mention and I never fly, and am pretty wary of doing so. For you, the aspergillosis is an added complication... that sounds like an infection, or is it maybe a mold or fungus? Guess I should look up that and posaconazole. I'm sorry neuropathy is a big problem for you, too... mine is there but milder. This disease gets so darn complicated. It should not be so hard to slow it down or stop it in its tracks, and I'm sorry you have the feeling of not getting a handle on it and your time to see your grandkids possibly getting cut short. I hope you are seeing a WG specialist who knows how to deal with the multi-faceted aspects of your case. My heart goes out to you. I hope things get better and can turn around somehow.

[Bloom]

Hi Anne,

Thanks for your helpful reply. I got here safely, although I was fairly uncomfortable on the flight (the effects on my gut from the antifungal medication, even although they said I could miss a dose).

I took cinnarizine (one of the trade names is Sturgeon over here) on the flight and although I was mildly dizzy, I didn't have vertigo, which is one of the nastiest things that can happen to you.

Take care.

Bloom

[annekat]

Hi Anne,

Thanks for your helpful reply. I got here safely, although I was fairly uncomfortable on the flight (the effects on my gut from the antifungal medication, even although they said I could miss a dose).

I took cinnarizine (one of the trade names is Sturgeon over here) on the flight and although I was mildly dizzy, I didn't have vertigo, which is one of the nastiest things that can happen to you.

Take care.

Bloom Hi, Bloom. I don't know how helpful I was, but I'm glad your flight went OK. I have read about cinnarizine online but haven't taken it. The meds I currently take for vertigo are lorazepam (only at night, since it will put me to sleep) and meclizine, which I've heard makes others drowsy, but it doesn't me so much. I also take sudafed twice a day, which seems to help. Just recently, I have been almost constantly feeling mildly dizzy and am afraid it could turn into vertigo at any time...... FUNNY THING, just as I was writing this, a bit of vertigo started as I was looking at the screen and typing.... so I stopped and it is now several hours later.... it stopped as soon as I left the computer but still struggling with dizziness throughout the day. I think it is stress related, possibly, as I'm in the middle of a big important project for the next week. Really thought I might get vertigo tonight but drank some peppermint tea and that seemed to help. Now have taken my lorazepam and am going to zone out. I know if you take the drugs too much it makes it hard for your body to get over it on its own, but I can't risk having an attack during the next week. Did your docs say what exactly was causing yours, whether it is WG related, as you feel it is, and I agree, in my case? I have found most docs, even my ENT, to be extremely vague on the subject of vertigo. Most of seem to them have no real idea what causes it. But you are so right, it is a miserable thing to have! I have seen a couple of online forums about it.

[Middlesista]

Glad you arrived safely to see your grandchildren - grandchildren make turning this disease around all the more paramount!