inhalers, nebulizers, prednisone, montelukast, tricky stuff, related stuff

[Samuel]

this might be slightly incoherent or too long due to brain
not working.

i have lung issues.(*)

my doctor's initial idea was 7 days of prednisone to calm
lungs down, plus an adrenaline inhaler.

i was a little concerned, but only on the basis of anecdotal
reports and general caution. for example, some mcs people
say they get panic attacks with adrenaline-containing dental
anaesthetics. and i think some pwme have been done in by
prednisone.

maybe i was being too cautious?

i asked about montelukast (which, could this also help with
suspected mcas?). he thought that this was a more dangerous
drug than a course of prednisone, because it could
predispose to infection. i hadn't heard this.

i also asked about trying steroid inhaler first before
trying prednisone, on the theory that it would be topical
and therefore safer. he agreed with the idea.

===

i haven't gotten anything yet, beacuse of price and
availability and bureaucracy and my brain not working well
and uncertainty, but here is what i have been prescribed:

- albuterol inhaler [expensive]
- fluticasone inhaler [unknown, probably expensive]
- wheels set in motion for a /nebulizer/ and an albuterol
vial for it

the theory of the nebulizer is that it will have fewer
inactive ingredients and will be cheaper. also, if i wanted
to try adrenalin i could put that in it.

i assumed a nebulizer was portable like an inhaler, but it
seems to be some big contraption that has to be disinfected
and cleaned? i can't really tell what a modern nebulizer
would be from the web. does anybody know? i might not have
a place for it. getting it cleaned might be a big issue.

anyway, hoping for general comments on what these things
are, what risks might be, what is usually done, etc.
otherwise, i am likely to postpone decision for too long due
to having no clue.

===

more details:

(*) lung issues include whistling, gurgling, wheezing,
phlegm, trouble getting enough air, pain. worse at night.
the term bronchospasm was used. i don't know if a specific
diagnosis like asthma was made. was told stethoscope
revealed wheezing for both inhalation and exhalation. had
wheezing as a child.

i believe my lung issues could be caused by the fact that i
am in a confirmed water-damaged building, and am extremely
mold-intolerant. i am bedridden except bathroom and do not
get fresh air. was seriously mold injured in late 1990s.
opening window helps breathing a bit. lots of air purifiers
insufficient.

===

i also have angioedema. this has not been narrowed down.
testing suggests that c1-inh function is ok. however, i am
taking four times the normal dose of antihistamines (2
cetirizine at night and 2 fexofenadine) and the episodes
continue. it is possible that they are shorter duration,
but not sure.

i am positive for anti-ds dna. tested twice. my doctors
says it doesn't necessarily mean i have lupus. does
lupus-caused angioedema look exactly like angioedema?

in any case, the connection with lung treatment is that
perhaps i should try an adrenalin inhaler (or nebulizer with
adrenalin), purely to see if it helps the angioedema. if it
works, then it, or an epi-pen, would be an emergency
treatment. right now, we know of no possible emergency
treatment.

===

ok, done with confused screed. i hope somebody answers.

thank you.

p.s. is this the correct forum?

 

[Bluesky]

i asked about montelukast (which, could this also help with

i have lung issues too. have a damp problem and some mold issues with asthma too.

no exert but just my experience was the inhailed blue used to make me shake, i think the long term use of this is not so good so i only use in case of emergency.

the most well tolerated i found was the montelukust. i have had the flu and had to use this again.

we both really need to move from the mold damp problems but thats not alway easy.

no expert but have also tried the pill steriods when was very bad some years ago and last time i caught a cold. its a case of breathing or not breathingn for me; i don't take the pill steroids unless its really really bad. though its amazing for my asthma that it works so fast.

i understand how hard it is for us to make decisions with such sensitivities.

i am told off by asthma nurses for not taking medications all the time but it for me is under control.

i am always very nervous about new meds too. if you can take your time to decide.

 

[Woolie]

Hi @Samuel. I can only contribute on the issue of prednisone (sorry, don't have anything helpful to say in response to your other questions). I asked on the other forum once about oral prednisone, and most PwMEs who've taken it get some relief form their usual ME symptoms, or at the worst, it has no effect. I certainly felt great on it. It just made all my symptoms disappear! However, it did affect my sleep in the first few days and I occasionally felt a bit jittery.

So, I wouldn't be so worried about oral prednisone from an ME symptoms point of view. But obviously, its a serious drug, and if you can do without it, so much the better.

 

[Sly Saint]

most PwMEs who've taken it get some relief form their usual ME symptoms, or at the worst, it has no effect.

I completely disagree with this; and seem to remember a number of discussions where others agreed it was a bad idea (unless it was life threatening eg Addisons). I won't post the links to the threads as they are on the other place and easily searchable.
There is also research to show that corticosteroids although anti-inflammatory to the periphery, are inflammatory to the CNS.
Two rounds messed me up big time for over two years.

 

[Allele]

Corticosteroids in even the tiniest doses are terrible for me. They send me into a very unpleasant/unbearable CNS overdrive.
This is also true for most hormones.

YMMV though, we all have such different responses to things. If trialling, starting at ridiculously low doses is prudent, imo.

 

[Woolie]

I completely disagree with this; and seem to remember a number of discussions where others agreed it was a bad idea (unless it was life threatening eg Addisons). I won't post the links to the threads as they are on the other place and easily searchable.
There is also research to show that corticosteroids although anti-inflammatory to the periphery, are inflammatory to the CNS.
Two rounds messed me up big time for over two years.

Yes, many take the view that the benefits are not worth the costs, but that is if you're taking pred to ease ME symptoms. But the question @Samuel had was specifically whether it would make his ME symptoms worse, if he took it for another purpose (and I assumed short-term use).

I also agree that prednisone as a long-term treatment to ease ME symptoms is not sustainable. You get kick-back eventually.

Corticosteroids in even the tiniest doses are terrible for me. They send me into a very unpleasant/unbearable CNS overdrive.

What @Allele said is definitely common. Feeling like you're in overdrive. My experience of this was mild, but I've heard of people that are really sensitive and feel like they're going crazy on it.

There is also research to show that corticosteroids although anti-inflammatory to the periphery, are inflammatory to the CNS.

I don't think there is persuasive evidence to support this claim (but do tell me if I've missed something important).

Prednisone is still used widely in the treatment of MS because of its ability to reduce neuroinflammation (recent review here). Its even been investigated as a treatment for some neurodegenerative diseases where neuroinflammation is a factor, such as Alzheimer's (low doses were not found to be effective - paper here - but high dose pulsing seems to have some benefits). There is one paper that is widely cited as indicating that glucocorticoids might cause neuroinflammation (link here). But it doesn't actually say that at all. The paper only examined hippocampal volume and found it to be lower in people with depression. Glucocorticoid levels were never tested, just inferred. Prednisone was never involved.

So unless I've missed something, pred makes you feel a bit crazy, but that's not likely to be due to CNS inflammation.

 

[Samuel]

are the detractors saying 7d course of prednisone is dangerous? my concern is that even if it is not dangerous, my lungs will just get inflamed [or whatever it is] again.