Is there a recommended procedure for those who want to see if reducing / stopping Montelukast is feasible?
For example, rather than just stopping abruptly, did you first reduce dose size and / or dose frequency - and by how much / over what period?
If you’ve come off Montelukast, has your Asthma got worse, better or stayed the same?
Did you have to temporarily or permanently substitute an alternative drug or increase dosage of other drugs you were already taking in order to do without Montelukast?
If I decide to try coming off it I’ll discus with my GP, but it would be useful to learn of your ‘quit attempt’ experience.
Thanks in advance for any comments.
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Matman
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Hi, I stopped Montelukast when pregnant with and whilst breastfeeding twins. I didn’t do it gradually, just didn’t take my tablet one day. I then restarted Montelukast when they finished breastfeeding. My asthma was worse when not taking Montelukast and it was a relief to get back on it. Good luck with your decision. Just out of interest, why are you wanting to stop taking Montelukast?
Ref your question, I think it’s easy / comfortable for someone to avoid periodically evaluating whether drugs that ‘might’ have been useful at one time are still worth the long-term usage risks associated with many meds.
My view is that, chances are, multiple year usage of many drugs will ultimately have their own health consequences.
As always, meds use is a trade-off between benefits in the short term and possible consequences further down the road.
I therefore think it’s important to regularly determine if it’s feasible to try and get by without the meds I’m taking.
Hi Matman, I am wondering why you want to cut down or get off your Montelakast tablet. As most Respiratory Doctors give this to moderate to severe asthma patients which tends to help them. Now I am no doctor but I have been on my own asthma ride over the last two years. I came to HK to teach English and picked up a very bad bronchitis that my body was unable to fight. After many antibiotics I finally killed that bug but was left with serve brittle asthma. One the first things my Dr's put me on was the blue puffer and a orange puffer plus Montelakast tablet. Afther a few months the Orange puffer stoped working for me. So the doc put on a red puffer I was on for another month and had a big asthma attack which landed me in ICU but fought to stay off invasive venterlation but begged for bipap which they gave me. I was in for 6 to 8 weeks. This time when I finally got was now on a purple puffer this helped me for a good 4 to 5 months. But then afther being well for that time. I cought pnumoia. So down I went again ending back in hospital. My doctors this time told me the would like to try a different combination of medicines.This included changing my blue puffer to the nebulizer form, adding xloair injections every 2 weeks, adding azithromycin tablets every Mon,Wed and Fri, plus adding Thoephylline tablets one tab twice a day. Throughout my asthma ride I have been feeling over heated and read a post on here that this person had link Montelakast to feeling over heated so I show my doctors and did not believe it, so I posted the question again to the asthma UK nurse and she agreed that it can. So last week I show my doctors the evednce and finally I have started to cut down that horrible tablet. I am sorry for the very long reply but I think you need to know my back ground. The Doctors over here are good but they take the little bit by little bit mind set. When someone with my type of asthma needs the big stick and not the little bit by little bit way of treatment. I hope to here from you soon. Asthmatim.
In a rely just left in response to MMBJI’s comment (above) I’ve clarified my reasons for considering reducing / eliminating Montelukast (so please see above).
Hi, I have stopped Montelukast, consultant talked me into trying it again. Which I did. It does not agree with me. Hard to say how much difference it makes, in my case because of then, constant infections. The consultant did agree that I should not take it anymore. My asthma has got worse, but even he said it was poorly controlled. I have an appointment next month with respiratory team. GP will not change my medication. Obviously everyone is different. Good Luck
I came off it without tapering in August. I thought it was working for me after an attempt a couple.of years ago where a consultant decided to.reduce my meds because I supposedly had mild asthma and took too many medications (she was wrong about that and a few other things - I am definitely better on than off my medications even if they are not perfect). I thought I got.worse but am not sure now as there were several other factors. I don't think montelukast is a major drug for me though it definitely used to have some.effect.
Thi time a better consultant said he does not care how many effective meds I take but he feels montelukast is not worth it for someone like me with non-allergic asthma - he also thinks it.generally is not useful, though I am.not sure I agree as I think it does work for some people. I have poorly controlled asthma anyway so find it hard to tell really whether it has made much difference stopping but nothing dramatic. I stopped before my mannitol challenge for 4 days but as I also stopped other meds I can't tell for montelukast (stopping them all was really hard even for a short time, but stopping my Fostair Nexthaler or Spiriva - usually by mistake due to pharmacy supply issues - seems to be more dramatic.)
Hi Matman, I have tried coming off the monteulkast on a few occasions since I started it in approx 2011.
Montelulast definitely has some negative effects on my quality of sleep. (Much more dreaming and sometimes difficulty with sleep initiation). That said my nasal symptoms are always worse with lots of post nasal drip throat clearing when I do stop it. I've also experimented with switching it to morning dosing as opposed to evening- but I have found it's effects less favourable with this.
There is the possible link with monteulkast and churg Strauss but I think the actual risk is very low. For me , despite the sleep cycle changes persevering with it I have felt is the better option but I would be interested to see how you get on. In the past when I have stopped it I just stopped it suddenly at a time when I was feeling controlled.
Montelukast is an antileukotriene probably works best as an adjunct therapy for those with a history of atopy (allergy) so if you have eosinophilic non atopic asthma it may not offer you as much.
Fevipiprant is the new oral med for asthma that shows some promise in clinical trials- perhaps one for the future
On a side note, as I know we have had previous conversations about nasal disease and asthma- have you tried over the counter nasal decongestants?
2 squirts to both nostrils of otrivine before my work Xmas party led to good temporary return of smell. There is a good body of evidence that usingfor more than 5 days can lead to rebound congestion but the odd day here and there for special occasions is probably ok.... I for one will be using it for a few days over Xmas so I can smell the turkey and all the trimmings!
As well as Allergic Eosinophilic Asthma, including Dust Mite Sensitively, I’m also getting what I’ve recently concluded is quite Severe Hives that wakes me at night.
I had assumed the Hives was eczema, as I sometimes get that too, and when I showed the severe rashing to my GP, he didn’t contradict me when I referred to it in the conversation as my eczema. (Maybe I should go back and see him, but you end up feeling like a pest).
However, I’m now very much convinced it’s Hives, though it seems the treatment options are similar.
So, while I’m aware that Montelukast is a possible ‘fix’ for Hives (as well as for Asthma) the current poor sleep impact of the combined Montelukast and the itchy Hives needs (somehow) to be addressed - as I’m stating to look like a Zombie, despite the 3.5 mg of Zopiclone Nightly that I’ve been on for years. I guess I could either ask to increase Monteluast Dose or see what happens if I come off it altogether (Decisions, Decisions!)
I can’t help thinking that the impact of all the different meds (including the Montelukst) must have a downside, and might further compromise natural immunity. I also get concerned that few of us ever discover if we’d improve by reducing our cocktail of drugs because we become so concerned as to how we’d cope without them that we never really try. Certainly, the first couple of months on reduced or zero doses would no doubt be very challenging, but (for those so inclined) the rewards ‘might’ be great (or fatal!!)
I’ve decided to try minimising all my meds with a view to seeing if it takes me anywhere other than A&E.
Have reduced Fostair 200/6 x 4 Daily, to x2 Daily, declined Biologicals, and will try tapering off Montelukast over several months, guess I’ll have to cut the pills in pieces (not very scientific I know).
I am, however odd it seems, considering reintroducing the 75mg Daily Asprin that seemed to cause me few issues over the years I took it before 2015, the year when my asthma got worse. (I know some eosinophilic asthmatics dont get on well with aspirin so I’ll have to reintroduce very cautiously).
I may have previously mentioned that although my cholesterol is not too bad (5.5 +/- ) I decided increasing Lipitor from 20mg to 40mg might provide some Asthma Improvement benefits, as I read somewhere it provides anti inflammatory help.
Wondering what to do about my Avamys Spray, as I’m not entirely convince that taking it for longer than the (roughly) 12 Months I’ve been on it already, is that great an idea.
Now focussing on frequent physical activity (mainy long walks, ‘at pace’) extra-healthy organic diet, very little booze plus weight reduction. I’m only about 8% to 10% over-weight, and have recently lost a couple more kilos, but - like many folk - I’m a sucker for Goose, Christmas pud, mince pies, a fine port and the occasional malt. So no doubt I’ll be welcoming back the ‘lost weight’ on the 1st of Jan, for a further month or two.
Appreciate your mention of the otrivine (sounds like an excellent idea) and will certainly look into it for occasional use. Is it the one that consists of more than one nasal steroid? The ENT guy I saw last time (dispite knowing I was on Avamys) recommended I try an over-the-counter nasal spray which - I think - he said contained two or three steroids. I have used a couple of over-the-counter sprays prior to Avamys, but the otrovine you mention does not spring to mind.
Ref Fevipiprant, I was tracking developments of it a while ago, but seem to recal (when I last did a Google News Search several weeks back) benefit results seemed somewhat sketchy, so my interest returned to the newer Biologics arriving in the wake of Mepo.
However, gather that - provision of each of the those newer biologics that makes it through NICE (which one did recently [B] ) will in future face the additional hurdle of local health authority (cost based) authorisation, and that patients will need to practically have one foot in a coffin to get a look-in.
Impression I also got is that patients would probably need to first try the two mainstay biologics before becoming elligle for the newer / better biologicals, some of which seem to offer the possibility of Lung Function Improvement which I’ve seen no evidence to suggest the current ones provide. Also seems a lot of the current biologic users are still propping themselves up with pred at 4mg Daily (so which is really helping, the Biologic or the Pred?). Plus read some concerns that killing off eosinophilic cells might be an issue as, apparently, they form part of our cancer fighting defences (need to look into that one more).
Dont wish to sound negative or political but - other than increased NHS Budget via a change of Gov - I don’t see much hope of many accessing these newer (Better?) Biologics, so hope Fevipiprant starts to shine brighter, and turns out to be an inexpensive and effective option that many can benefit from.
Apologies if I repeated some of what I said I. Early Posts / Comments - and for the general ramble, which hopefully clarifies my self-revised DIY Asthma (and Hives) plan.
Once more, thanks for all the valuable insights, and hope you and yours have a great Yule.
I hope the reduction works for you. I tried reducing my fostair last summer on the basis of my morning cortisol being borderline suggesting all the inhaled steroids were having an affect on my adrenal but it led to increasing symptoms, worsening peak flow and then the slow decline leading eventually to oral pred.
My feeling with Avamys is that the medication is not getting to the right place. If I use steroid drops which penetrate better into the sinuses and olfactory area my sense of smell returns and sinuses clear. Avamys has been the best nasal steroid spray for me but most of it seems to deposit in the nose and not higher up- leading to a dry nose but not really clearing the sinuses etc. This is potentially why endoscopic sinus surgery I think might help as the Ostia into the sinuses is enlarged aiding drainage and allowing the medication to reach the right place . I'm not aware of any nasal spray that contains 2x different steroids. Dymista contains. Fluticasone and an antihistamine but I found it tasted horrendous and was no better than Avamys. Otrivine is a nasal decongestant ( basically reduces blood supply/vascularity of the nose and hence opens up nose and sinuses). Problem is if you use it for more than 5 days it causes rebound congestion which can be very troublesome- but I think the odd day for special occasions is fine.
I think if I meet criteria for the biologics I will one. I'm very close currently- on 3rd exacerbation this year - so another before Jan and I qualify. Ive read a lot about them and speaking to a few consultants I think it's worth a try. Omalizumab has 12 years of data now. There is some evidence that CT changes of chronic rhinosinusitis are improved with them ( this makes sense to me if you think the reason you cannot smell is due to inflammation in the nose caused by eosinophils causing swelling) so if you block IgE that is driving the allergic eosinophilic response it should help control the disease.
To me it is a lot more of a specific treatment actually treating the cause of the problem rather than inhaled or oral steroids that just try to control inflammation and at high doses hopefully control the eosinophils. I imagine that if money was no option many more asthmatics would be offered them .
In the meantime I am now using ciclesonide in addition to full dose fostair to see if this combination can hold the Eos in a similar fashion to oral pred does but will less systemic side effects . The theory behind ciclesonide is very appealing to me- ultrafine particle size meaning more likely to get lower down into smaller airways. Also highly specific to the lungs meaning less likely to cause oral side effects also less systemically absorbed so less likely to have effects on bone/ adrenal gland/ cataract formation etc.
Part of my problem unfortunately is that being a GP I'm currently seeing approx 15-20 patients daily with coughs and colds meaning picking up viruses is frequent and this then can aggravate my asthma- maybe time for a new job!
The other slight concern I have in reducing down my medications is that if this leads to poorer control - it doesn't just mean you are more likely to have exacerbations but it also may mean more airway remodelling and as a result lung function decline.
Of note though - the desired effect of higher and higher doses of inhaled steroids does plateau and it may be that 1000mcg BDP equivalent and 2000mcg BDP offers very little increased benefit but with more side effects - I guess everyone is individual. 1 puff twice daily of fostair 200/6 is 400mcg extra fine BDP which is roughly equivalent of 1000mcg normal BDP.
The max dose of montelukast is 10mg there are some smaller dose chewable tablets designed for paediatric patients. (Montelukast is offered in atopic / allergic children )
Re the skin rash- dry skin/ eczema is very common with atopic patients. Urticaria/hives may be coincidental - the hives may settle with an antihistamine or if the skin is itchy and dry , the act of scratching could be causing the hives. Monteulkast should offer benefit here
My most recent plan is not set in stone, so I’ll take a further look at Omalizumab Research, as I can see your point about the IgE.
It would also certainly seem more sensible to prevent excessive eosinophil release rather than using medications which might interfere with Eosinophil Function when the body needs it to cope with serious threats other than Asthma.
Many of your other comments make perfect sense too. Avoidance of Increased Airway remodelling risk is, as you remark, particularly important
BTW, regarding Inhaler particle size, one observation I came across that made sense to me, is that a mixture of particle size (rather than just fine particle size) might offer the most effective result. I guess that would mean using two steroid inhalers as I’m not aware of a single inhaler that delivers mixed particle size (though I guess NHS Policy / Cost Control may prohibit that).
Your Respiratory Patients are indeed very fortunate to have a GP with such a deep and genuine insight into Asthma, so maybe don’t give up the day job just yet.
Hopefully we’ll both see some improvements, even if we end up using different approaches.
Thanks for the kind comments. Yes I tried fluticasone accuhaler (large particle) as additional Steroid on top full dose fostair but it affected my sleep and I felt a bit "hyper" - I imagine more was being absorbed systemically and perhaps leading to oral pred like effects...lungs felt good though!
Certainly the healthy eating, exercise etc can only be beneficial. Best of luck
My impression was that the extra barrier would be at national level and based on the overall cost of the drug - so yes biologics would be affected, but the delay would more likely be around initial NICE approval. I wasn't aware of anything about local health funding decisions, though I know this used to be the case with Xolair and they then changed it so you had to have access if you met the indications. I'm unsure what restrictions they are allowed to place on access if the drug's licence doesn't specify that eg it is for patients with abc condition who are uncontrolled on, or are unable to have, xyz other therapy. If I qualified for a biologic (I'm hopefully eyeing up dupilumab in case they license it without reference to eosinophils, based on trial results), I could not be made to try the current lot first because I don't meet the IgE or eosinophil criteria. However, it may depend on how they word the indications.
Regarding being wary of trying to stop medications, I am aware that current asthma drugs are only really controlling the disease, not providing long term effects. That's not ideal of course and I'd certainly prefer some which had a more sustained effect, though uncontrolled asthma can take its toll anyway eventually. However, my experience of mostly accidental or unintended stopping has shown me personally that I'd rather still be on them.
I haven't meant to stop them usually but it's a great way to find out what's doing something (eg Spiriva in the handihaler form - as much use as a chocolate teapot, stopping makes no difference. Spiriva Respimat - kept asking to stop as I was sure it was doing nothing. Kept being told no, for you it's a good one. GP surgery screws up, without it for 4 days, forced to agree that yes, in fact it WAS doing much more than I gave it credit for and for once I'm glad they didn't listen to me!)
I don't spend my life in fear of ending up in A&E (it's really annoying mind you), but my brief stops have suggested I'd end up there and beyond if I stopped it all for any sustained period. Meanwhile, my quality of life would really be a lot worse which bothers me a lot more than hospital (not that being admitted is especially good for that either). I have done less severe asthma with no meds and I may not have been in ITU but I was good for nothing in daily life because it ate my energy. I may now be more severe and end up in hospital but at least I don't have that every single day, because my meds help to some extent.
I can appreciate the side effect concern and longer term effects (I have suppressed adrenals from pred), and I am frustrated that we're not further forward, but in my personal view the drugs keep things at bay and allow me to do things most of the time, and I've seen enough of the alternative for myself that it doesn't seem worth cutting down just for the sake of taking fewer drugs. I've also been in hospital opposite a 19 year old who should have had easily controlled asthma and because she was not given proper education on taking her preventer and how the principle of it works, nearly ended up in HDU. I feel like we're still at the stage of using the drugs as crutches with asthma and it's really not ideal, but at the same time, the person with the bad leg who tries to ditch the crutches too soon will end up flat on their face, much as they wish they had better options for fixing the leg!
However, I'm all for evaluating what's working and what's not worth it. I appreciated my consultant's view on montelukast for me ie for you it's not worth it - I disagreed with him on Phyllocontin because for me without side effects that *is* worth it.
Hope this doesn't sound like me lecturing, which isn't my place - just my perspective on the medications issue.
Cheers. Good to have feedback / input, especially when it challenges my views, as different opinion helps to shape best decisions.
BTW, your reply arrived the second I refreshed my browser after a re-edit of my lengthily Comment, so there may now be some points from that re-edit that were not there when you first read it.
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