Prednisone taper, Xolair, asthma-free vacation in France

[runcyclexcski]

Hi all --

If you have successfully tapered down, or got off, prednisone after getting on Xolair -- could you comment whether morning cortisol of 260 nM is acceptable, right before switching from 4 mg to 3 mg a day? I have been on 4 mg for 6 weeks, and I am now going down to 3 mg. My nurse and consultant gave a go-ahead, but also gave me a leaflet in case I get worse (10 mg prednisone).

Since going from 10 mg pred to 4 mg I have lost 8 kilos. Last month, I went on a 3-week vacation to the Alps (drove to Haute Savoir with my wife). We found that it was much easier to find a carpet-free (hardwood) hotel room in Europe than in the UK. I only found one hotel in the UK so far that had hardwood floors.

While on vacation, I brought a DIY HEPA/carbon filter with me which blows air into a small tent, and the tent was set-up on top of the bed. The filter is the next-version prototype of my previous filter contraption (posted here a few months back) -- it is now the size of a suitcase (used to be refrigerator-sized) -- I made it for air travel, but we decided not to bother flying this time. And the filter unit is now much more quiet. I set it up in the bathroom, and it was directing the air through a 100mm duct to the tent. Measured the counts in the tent with a particle counter -- all good. The chalet staff did not mind. It helped quite a bit, b.c. chalets in the Alps like to use firewood and have BBQs. Plus the cow smell, hay smell, smokers outside (this is France, after all) i.e. there is always something in the air.

By the end of the stay in the Alps, I was able to go up 400 m in the mountains every day (a year ago I could not walk to the bathroom b.c. of asthma). I still got chest discomfort at the end of the walks, so had to take the inhaler for that. But, overall, I think there is progress. Upon coming back, I found that I could now run 6 miles again at a slow pace (I still wear a respirator while doing that). Hoping to lose another 8-10 kilos by the time I get to 0 pred (if I get to that point).

Quit coffee as well: I found that if my chest gets tight I freak out more if I am caffeinated than not. So, green-tea only now.

[madamestephens]

Glad you had a good trip to France. Sounds like you have some good strategies.

[Gwalltarian]

Great news, you’re doing so well. Advice I’ve been given is to take the reliever inhaler before exercise - I wonder if you did that perhaps you wouldn’t get tight chested at all on your mountain climb. The other advice given to me is to avoid any symptoms because they can cause damage in the long term - so perhaps it’s worth taking the reliever inhaler before the climb as you now know that currently it does affect you a little.

[runcyclexcski in reply to Gwalltarian]

Thank you, Gwalltarian. I always took the inhaler before the exercise, and it did not prevent the chest tightness 2 hrs later at the top of the mountain. My theory is that at high intensity the albuterol is metabolized faster, perhaps. Need to ask my consultant about this. So I still have to take the inhaler yet another time immediately after the exercise stops -- otherwise I will get bad chest tightness 30 min after it stops, and if it happens on top of a mountain it is not a good situation (I still have to climb back down).

No matter how well I am, and what precautions I take )inhalers, respirators etc), I always get chest tightness from exercise. The difference between "being well" and "not being well" is how severe the chest tightness is (when I am unwell, I cannot walk and have to lie down to let it pass ). It appears that I have no choice in avoiding it if I am to lose weight and get more fit. I even get some tightness on my exercise machine which allows me to breathe humid warm filtered air through a tube at 400 lpm (meant to avoid exercise induced asthma).

[Gwalltarian in reply to runcyclexcski]

You made some interesting points: you take the reliever before your climb - presumably when you are symptom free and then the exercise induces further symptoms needing relief - the albuterol does then clear all symptoms?Even under the most favourable environment you still get symptoms during exercise. Hopefully your consultant will pick up on these facts and devise a solution - perhaps more puffs of reliever prior to any exercise. I suppose you have scrutinised your diet for food and drink you might react to. Good luck.

[runcyclexcski in reply to Gwalltarian]

>>>perhaps more puffs of reliever prior to any exercise.

I already take 6-7 (I have big lungs though -- my baseline PF is 780...800).

Not really, no new insights so far, I keep mentioning this to my consultant. I remember my previous MD in UCSF gave me Intal and Spireva, but I can't remember if these did anything.

[Gwalltarian in reply to runcyclexcski]

I became rather unwell a few years ago and one of the inhalers I was initially given was Spiriva - on inhaling it my lungs felt that they changed from twisty, narrow, clogged lanes to an 8 lane motorway, I could breathe more easily than I could ever remember doing so. It alarmed me rather, I was afraid if I were to take it daily that my lungs would grow accustomed to it and I would need the dose increased. I felt I needed a lower dose initially. Anyway, it affected my voice box within a few days and I sounded like an old, heavy smoker!! It was the most effective inhaler I’ve tried in recent years - prior to that, following a badly asthmatic childhood with no inhalers, at age 13+ a locum doctor prescribed a Medihaler Iso ( Isoprenaline sulphate) which was magic. I went from being controlled and paralysed by asthma attacks to being in control and being able to dismiss any symptoms immediately with a puff or two of my inhaler. Sadly that inhaler was considered dangerous - because overdosing on it killed people - and it was discontinued in the 1970s. I think you could try asking to modify your preventer. I saw an excellent asthma specialist nurse when I was unwell. She recommended:

1. a SABA - a salbutamol short term reliever .

2. a LABA, long acting broncho dilator, on its own either:

i. Onbreze, a capsule, dry powder, or

ii. Striverdi Respimat, a propellant driven inhaler.

Together with either of these she recommended :

iii. a LAMA, Spiriva Respimat, - long acting anti muscarinic agent.

I was to try these for 6 weeks - starting initially with the LABA or LAMA to see if I reacted adversely to the one or the other. If I was happy with both she suggested I then try SPIALTO which combines both Striverdi and Spiriva.

I had gastric reflux which is an asthma trigger, so I was to take omeprazole for that initially and then ongoing.

Take montelukast - I can’t take antihistamines - to help overcome allergies, beginning a week prior to starting the Spiriva Respimat.

I was to keep a PF chart for 6 weeks, taking it in the morning before the drugs and at 6 pm.

The above helped me quite a lot but I never felt quite right and I tried a number of inhalers since. Currently I am much improved and just need 100mcg flixotide once daily - sometimes not at all. I only take montelukast when I feel allergies are affecting me and I am trying to cut out omeprazole. I no longer have dogs, don’t drink red wine and avoid anything that is an asthma trigger for me. I have an air purifier/dehumidifier to run at nights at times and keep a ventolin inhaler with me at all times in case it’s needed.

This is all probably old hat to you. I hope you find a solution to your asthma problems.

[runcyclexcski in reply to Gwalltarian]

Maybe other countries still make that magic inhaler

I am on Seretide 500/50 (steroid + LABA) and montelucast (the latter I never thought like it did anything, but I am afraid to change). That's in addition to Xolair and (now) 3 mg/day prednisone. When I went from 4 to 3 I get a bit worse, but I am used to it as it happened also when I went from 5 to 4 a day

[Tree20862]

I was able taper off of prednisone after starting Xolair. I started the Xolair during a Fall asthma flare. I was on varying doses of prednisone for 6 months. I had never been on prednisone that long before.

I have had flares of asthma since starting the Xolair 6 years ago but each flare has responded to a short course of planned prednisone. It is about once per year. One time I actually went 15 months prednisone free! The last 2 times my pulmonologist used short bursts of pred... Once was 5 days and the last time we did 3! Xolair is really working well to decrease the reaction of my lungs. I still use albuterol, too but so much less prednisone! ❤️

[runcyclexcski in reply to Tree20862]

Thank you, Tree. I am on 3 mg right now (after going down from 20), I am hoping that I will be able to keep going down to 0.

[Tree20862 in reply to runcyclexcski]

my doctor and I did a slow taper successfully. I wish you well on your journey.