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Bloom
04-16-2016, 11:25 AM
Hello everyone,

I am on methotrexate 15mg weekly, and because I am on posaconazole I can't take my old inhaler, seretide. I had two viral infections one after the other and it seemed to destabilise things for me. I had been reducing my pred dosage from 10mg hopefully to 5mg. I had successfully reduced to 7.5mg and was alternating this with 5mgs every other day for a month (medical advice).

I have now recovered from the viral infections but for the last few weeks I have been suffering from what I call squeezed lungs and some haemoptysis. I increased my steroids again for a few days and last week it was severe enough to go up to 12.5 for two days then 10 for two days, then 7.5 mg again.

I wonder if methotrexate is causing this to happen, as it seems to happen the day after I take it, can it cause worsening of asthma ( before I started to take posaconazole my asthma was always well controlled. Initially before I was diagnosed with vasculitis I had thought my asthma had reappeared and I was on a lot of asthma drugs to no avail.) Of course it could be just the reduction in steroids again but I wondered if anyone else had experienced this.

Best Wishes

Bloom

vdub
04-16-2016, 05:16 PM
My personal experience with mtx hasn't had any side-effects like that and I can't recall hearing of any either.

What do your lungs feel like when they are "squeezed" and is it worse when you bend over, say, to tie your shoes?

Bloom
04-16-2016, 05:59 PM
Thanks for your reply vdub . Squeezed lungs" isn't a very descriptive term. It's a bit like bronchospasm, what I used to get when I had asthma, but doesn't respond to ventolin nhaler. It's worse when I'm moving about, after the tightness wears off I usually start coughing up fresh blood, but not enough for me to go to A&E.

But writing this now, maybe it was just wishful thinking that it was MTX. It's just Wegs I guess. I'm getting the same fatigue with it.

Alysia
04-16-2016, 08:24 PM
Coughing blood indicates wg activity. I am sorry. The pred "covered" it and once you reduced pred, the wg raised his head. 15mg mtx is not enough to treat wg activity unless you are very thin and tiny. I think that you need to see your wg dr. and to ask for more serious treatment. Good luck and please update us.

Bloom
04-16-2016, 09:53 PM
Thanks Alysia, I am quite small, 5'2" and about 7st. Apparently I can't increase the dose of MTX because after a bronchoscopy in September last year I was found to have aspergillosis, before that I had been having MTX and IV cyclophosphamide and pred. The longest time I have been without haemoptysis is maybe about 2 weeks, but I have been coughing up varying amounts of blood every day for the last two months.

It's really hard to know what is OK and what's not OK. I've been on pred for 16 months and I really want to come off it because I have osteoporosis. I don't really feel as if the MTX is working but for a little while I thought it did. That coincided with taking posaconazole for the aspergillosis though, and the last CT scan I had done showed that was much improved.

One Dr told me I might always have haemoptysis, so that's what I tell myself when I cough up a blood clot.

Alysia
04-16-2016, 11:19 PM
Do you have other wg symptoms ? How are your blood tests ? What about treatment with rtx ?
Sometimes we have no choice but to keep the pred if it stops the wg from raising its head. Especially if other meds are not allowed or not working. Although the best should have being that mtx will beat the wg.
Mtx never worked for me. I tried it about a year or so. Only rtx helps me.
I still think that coughing blood is no other but wg.
And there might be some antibiotics to treat the asbergillosis ?

zizzcat
04-21-2016, 11:14 AM
In Dec the rheumatologists cut my immune suppressants in half. I didn't get as many bronchial infections but my lungs and joints deteriorated anyway.

i see a pulmonologist for my lung problems. Am on a high dose of atrovent inhaler, moderate dose of theophylline for asthma, nebulizers and daliresp for COPD. I also take 20 mg of prednisone.

because the immune suppressants were decreased, all that is barely enough and now have interstitial inflammation of the lungs.

I have some reports to show the rheumatologists Monday and hopefully they will increase my immune suppressants again.

Bloom
04-23-2016, 01:13 PM
Hi Alysia , thanks for your advice. As well as tight chest and coughing up blood. I have sinus headache, earache and toothache. I would hope to have rituximab, but feel that the aspergillosis will preclude me from having that. I am on posaconazole for the treatment of aspergillosis and it's really hard on the gut, and gives me irregular heart beats at times.
I guess I'm hoping for a "magic bullet". From time to time I just feel like stopping everything to see what happens!

Alysia
04-23-2016, 06:00 PM
Hi Alysia , thanks for your advice. As well as tight chest and coughing up blood. I have sinus headache, earache and toothache. I would hope to have rituximab, but feel that the aspergillosis will preclude me from having that. I am on posaconazole for the treatment of aspergillosis and it's really hard on the gut, and gives me irregular heart beats at times.
I guess I'm hoping for a "magic bullet". From time to time I just feel like stopping everything to see what happens!

I am sorry. It sounds tough and complicated. I think that the other symptoms point to wg activity. Need to find a way to treat it without letting the aspergillosis hit hard. The best will be if you can find an expert wg dr. To treat you.

My beautiful Phil had times in which both his wg flared and he had lung infections with very nasty strong germs. They treated him with both lots of antibiotics (through a picc line at home) and ctx and rtx. He was treated at once by wg dr. , pulmy and infection disease dr. If you want to read more its on the first thread in my signature.