I'm diagnosed with eosinophillic asthma but when I recently had a blood test my eosinophil count was normal. I still have Asthma, so is it definitely eosinophillic asthma?
I also remember reading that if a patient has an Eosinophil Count done several times in the same day, wildly different results can apply each time.
I've had several FeNO Tess showing high scores but is high FeNO a marker only for eosinophillic asthma, or for other forms of asthma too?
Anyone have any insights on this to share?
UPDATE: 31 Oct 2017
Just found this 'very' informative 2017 Article on Type 2 Asthma
I'm not sure on the eosinophillic side of things as I have atopic brittle asthma. But the high FENO can apply to anyone. It just shows the level of inflammation in theairways.
I've asked the Asthma UK nurse team about this, it took us a while but we think we have an answer for you!
If you've been diagnosed with eosinophillic asthma, because you're being treated, your blood tests are within the normal range.
FeNO cannot be used as a standalone reading to confirm a diagnosis of a type of asthma but you may have a raised FeNO for other reasons such as blocked/runny nose - allergic rhinitis, having a recent chest infection, having too green veggies before you went for the test etc.
If you're concerned about your FeNO levels, do talk to your usual health professional about it. It might be worth keeping a symptom diary as your asthma can change over time.
I though the Meds (Fostair, Montelukast + Avamys Nasal Stray) all dealt only with Symptoms and did not effect the underlying Eosinophil Count.
Seem to recall that forced Sputum Testing is more accurate than blood tests for Eosinophil Asthma confirmation.
Unfortunately my Leicester Asthma Clinic postponed my August Appoinment until Jan 2018, meaning 9 Months (from my last appointment in May 2017) till I next see someone. Presumably a forced Sputum Test won't therefore be possible until then.
The Blood Test I referred to in my initial Post was done (recently) by my local GP at my request.
I'll have to investigate to what extent Montelukast can impact my Eosinophil Count (don't think Fostair or the Nasal Spray effects it).
Assuming I do have Eosinophilic Asthma, maybe the Count is only high when it 'flares up'.
The info on FeNO you provided was stuff I was not aware of so, thanks again, and I'll bare it in mind.
Hi there, this type of asthma has recently been mentioned as being what I have, having been referred to Brompton Hospital. Can I please ask if you know what the normal blood levels are for eosinophillic count? I have seen a result of mine but I'm not sure if it's above what the normal level(s) should be?
Hi - Been abroad so missed your question. Roundabout Answer. Eosinophil Count can vary wildly. Where part of the reason for a Blood Test is to identify your current Eosinophil Range, your GP (or whoever) will see on the Result an IN Range / OUT of Range Flag, together with the actual Count. You can ask your GP's Receptionist to print you a copy of your Blood Test Results (I always do these days, as I use Private Consultants too, and find it handy to have the info to hand to show anyone I refer myself to - even though they are typically able to access my NHS Records as they are always Medics who also work for the NHS). As mentioned in original Post, thing to be aware of (and I'm not even sure how many of the Professionals are fully savvy of this) is that - a person's Eosinophil Count - if done at several different times of day - can show wildly different Counts. What Consultants seem to be more interested in is your FeNO Score (Forced Exhaled Nitric Oxide) which purports to measure the level of Airway Inflammation you are suffering. Apparently, a normal FeNO Score for someone not suffering from much Airway Inflammation is Sub-20. A Score below 40 for many Asthma Suffers is considered to be moving in the right direction. My FeNO Scores have ranged from 50's to 135 (so not so clever). However, a FeNO Score should be considered alongside a Forced Sputum Test i.e. where someone analyses Mucus you've been encouraged to cough up (as we're not into infallible science with this stuff, and validators and comparitors are therefore essential to build an accurate picture). A good article on Eosinophils / Asthma can be found here: medicalnewstoday.com/articl...
Dear matman- I'm a GP but also a eosinophilic asthma sufferer- so thought I would share some of my thoughts and experiences. Leicester is a good place to be Prof Pavord and others are leaders in this field so hopefully you are in good hands.
What combination are you taking medication wise currently ? And how often are you exacerbating?
I was diagnosed with eosinophilic asthma 2 years ago after a rocky year needing 4 or 5 courses of oral pred- my usual triggers at this time were viruses and dust. I was moving house and this was just put down to this.
Eventually I had a full assessment and my serum eosinophils were about 1.6. My fev1 was down at about 60 percent predicted and a CT showed severe air trapping consistent with small airways asthma.
I was stabilised with a 6 week course of reducing dose pred then onto fostair nexthaler 100/6 4 puffs twice daily plus monteulkast and a Avamys. This led to reasonable control for about 10 months- with a gradual rise in eosinophils- when mine reach about 0.6 I start to become symptomatic and peak flow gradually declines and usually when at 75 percent I go on pred.
The aim is to keep eosinophils less than 0.3- this usually indicates reasonable control. The aim is that inhaled corticosteroids at high enough dose can suppress your eosinophils and gain control. The problem is that as the dose of inhaled steroid Goes up the benefit curve flattens so sometimes increasing the inhaled dose doesn't lead to much improvement.
Last year I was placed on additional flixotide 250-500 per day in order to try to prevent an exacerbation requiring oral pred- unfortunately this has had limited success. I swapped from fostair to flutiform 250/10 recently.
Before the advent of biological therapies patients with this type of asthma were sometimes controlled on a off license dose of up to 4000mcg beclomethasone per day . Normally the asthma ladder would put you on oral pred if needing above 2000mcg equivalent but I think the feeling is having the steroid inhaled is associated with less systemic side effects.
The problem with escalating high doses of inhaled steroids in my experience is the potential for unwanted side effects- e.g. Mood disturbance, agitation, adrenal suppression, skin thinning , risk of osteoporosis, insomnia etc.
The other recent nuisance I have found with the condition is lack of sense of smell. As a foodie this is such a pain! I get a 5 week grace period with oral pred where my sense of smell returns then for the rest of the year despite Avamys 2 sprays each nostril I have little sense of smell. Is this a problem others have experienced?
An inhaler I'm considering seeing if the specialist will prescribe is alvesco (ciclesonide) - worth looking up the evidence for this inhaler- very small particle size and perhaps better peripheral lung deposition- some case studies in the literature that show some promise but I have seen very little prescribing of this from my experience in the NHS.
I am in the frustrating position where I am not quite meeting criteria for the biologics but not fully controlled on high dose treatment. It is a frustrating condition but also I guess lots of research into biological treatments that block IL5 and hence stop eosinophils congregating in the lung tissue and causing airway remodelling which is responsible for asthma
Amazing useful Comment. Thanks for taking so much time to reply in detail (much appreciated). Without exaggeration, over the last 2 years or so, since my well controlled - by Ventolin only - Asthma suddenly became much worse, I have read - literally - thousands of hours of scholarly Respiratory Disease articles on professional user medical websites. Ive been Phenotype by Leceister (but not yet accurately endotyped as far as I’m aware). I too have seen Prof Pavard (privately). Believe he now works with the Oxford Team.
In order to ensure that the MAB route is likely to be successful, my understanding is that you must get fully endotyped and that phenotyping is not really enough. Leceister are participating in a study concerned with the reduction of inhaled steroids (you’ve probably seen the info). One of the Tests included in that study (name alludes me) is very useful for advancing endotyping - but the Study Parameters probably mean they won’t share the result of that Test with ‘subjects’. (I’m therefore thinking about getting it done private).
My current view is that MABs are very hit and miss although I am interested in Dupilumab which has been approved for Dermatitis but not yet for Asthma. You might want to take a look at it, as it has some bearing on the symptoms you report. At least one US outcome with it have shown good results for sense of Smell recovery into the medium term. I’m guessing because it’s actions seem to reverse (partly at least) Eosinophilic Linked Nasal Polyp problems, usually the culprit behind loss of smell / taste I gather. (It’s also shown Asthma / Lung Function Improvements / benefits).
At present, I’d personally decline most MABs in favour of tried and tested Pred (notwithstanding Pred Issues).
Seems that most folk on MABs are also taking Pred anyway (and at least Pred has been in use for long enough to know it’s risks). One recent MAB ‘R’ seems to have double the placebo tumour risk which, while still low(ish) 0.6, is a consideration to think about. But I ‘might’ just make an exception if offered Dupilumab if that would fix my sense of smell as well as my Asthma (see below).
Like so many Eosinophilic Asthmatics, I know for a fact (CT and MRI) that I qualify for for Polyp and sinus surgery and am pretty convinced that the nature of the daily asthma I experience would be improved by that surgery. (I’m entirely symptomless seven days after 40mg Oral Steroid / Antibiotic Combo which also results in my usual coloured nasal / chest mucus becoming clear PLUS full sense of smell / taste recovery due to temporary Polyp shrinkage no doubt, which allows for better sinus drainage. (Must remember to ask Santa for some Pred a week before Christmas so I can smell and taste the Goose).
Have hesitated over Polyp and sinus surgery as I gather the benefits may only be short term. Also, because - I gather - where older patients are concerned - any surgery (especially above the shoulders) can become a trigger for senility due to the risk of anaesthetic use. (I’m now looking into Polyp surgery via local anaesthetic, but that won’t help with the related sinus and septum work that may be necessary to do a thorough job). I know that the risk of finding a nasal Polyp is cancerous is low, but as any testing for that seems to occur ‘after’ Polyps are removed (rather than before) it’s another factor to consider before jumping in for surgery.
While Severe Asthma Attacks (bar one) have been absent this year (awful last year) I’ve still had to take Pred three or four times along with antibiotics because of gradually increasing mucus build-up plus gradually worsening Daily Asthma Symptoms / Peak Flow as a result - it seems - of the mucus issue. (More like Chronic Bronchitis than Sxthms, but chest CT shows no obvious evidence of Bronchiectasis / COPD - though I do have granulomas).
After the Pred Course I’m like a Non-Asthmatic, but then start a daily decline until I’m forced to repeat the Pred two or three months later to alleviate the mucus build up. Not sure Fostair 200/6 NEXT Inhaler (4 Puffs daily - max inhaled steroid allowed) is the best ‘fit’ for me, as I wonder if it makes my mucus worse, but it seems I do need a duel Inhaler. Likewise, I also wonder about the long ‘term’ use of my avamys and montelukast. (In desperation decided recently to double my Statin Dose to 40mg as there seems to be an anti inflammatory benefit from that too). Also, as the Patient Info Notes on Fostair carry a stark Potassium Depletion Warning, I’ve tripled Potassium Foods Intake as you can only safely supplement to 100mmg per day and need 3 Grams plus per day of (natural) Potassium.
Will carefully reread your Comments again to ensure I capture all the crucial points.
I can recognise a very similar pattern with myself- I empathise with you.
I have found moderate intensity exercise beneficial at coughing up the stringy mucus but if the exercise is too intense i think this can be detrimental.
I take vitamin D and more recently I'm trying turmeric- i think the evidence to recommend this is low/not strong but i thought there was no harm in experimenting.
A few points to consider, it may be worth trying just prednisolone next time you exacerbate, I always used to use antibiotics too but found that actually it was the steroid I needed and if it is eosinophil driven there likely is no bacteria to treat- might be worth a try. obviously if you have fever/unwell you may need the antibotics too
If you are requiring 4 or more courses of pred per year it would be worth getting your bone density checked with a DEXA- your consultant/GP may have already arranged this.
Yes - low potassium is possible with inhalers , however supplementing potassium can be tricky as too much potassium can cause fatal arrhythmias- so it may be worth arranging a UEs blood test just to check if it is needed.
Has your consultant suggested "intensifying" your inhaled corticosteroids? By this i mean using an off license higher dose of inhaled steroids. As i say the asthma ladder step 4 is upto 2000mcg BDP equivalent steroid (this is what is in full dose fostair) but my consultant has favoured adding in extra steroid in an additional inhaler rather than going onto daily pred, with the hope this leads to fewer exacerbations. You might find at a dose of 2500-3000mcg it might prolong the periods between exacerbations- might be worth a discussion with the consultant- but are you saying in leicester they are trying to reduce your steroid component? I wonder what the rationale is behind this. Remember doses above 2000mcg are "off license" so you would need your consultant to suggest this but i know historically before the advent of biologics some patients were maintained on upto 4000mcg BDP equivalent- but i guess there is little safety data in this area- most of it is anecdotal
In 200/6 fostair 2 puffs twice day the LABA component is only 24mcg whereas in flutiform which i am currently on it is a bit higher at 40mcg. I was on 100/6 fostair 4 puffs twice daily- essentially the same steroid component to you but double the formoterol at 48mcg- i think in the nexthaler formula again this was off license and certainly made me a bit jittery but i soon got used to this and the higher LABA may have been beneficial
I think if i was offered nasal surgery I would consider it. Unfortunately my understanding is that if they do a polypectomy if the polyp process is eosinophil driven unfortunately it is likely only a matter of time before it returns. But my understanding is after sinus surgery the size of the entrance from the nose into the sinuses is increased making it more liekly that the steroid nasal spray gets up into the sinus area which is the area responsible for the loss of smell- so on this basis it may help. It also probably increases the amount of liquid getting up into the right area if you nasal douche- but you are right- the sinuses are close to the brain and not without risk- so it is something that needs careful consideration. I have had slight benefit from using occasional course of betnesol drops or flixonase nasules- these are more potent than sprays and allow better deposition to the upper nose/sinuses but carry more risk of systemic absorption compared to sprays but still a lot less than prednisolone- if you haven't tried might be worth trying the occasional course to see if it returns the smell/nasal congestion without needing pred, but obviously if the asthma is flaring you may need pred instead.
I will have a look at Dupilumab. I know there is a phase 3 clinical trial into benralizumab happening at Nottingham currently.
I am in my 30s and up until 2015 generally had very well controlled mild-moderate asthma with rhinitis- usually having one viral exacerbation a year- the change is certainly frustrating
Thanks for that. The Test Name I could not recal is serum periostin. Other Tests which (I think?) are supposed to contribute to endotyping and correct MAB choice are POSTN, CLCA1 and / or serpinB2 (think these are genetic tests). Believe the idea is to determine if you are a type-2 high or type-2 low Endotpe and that knowing this indicates the best Med Choice.
The Leceister study (Prof P Bradding) has the somewhat lengthy title of: A Trial of adjusting Steroid dosing in Severe Asthma using inflammation markers compared to asthma symptoms and lung function.
In essence it seems to be about establishing whether higher dose Inhaled and Oral steroids are helping or hindering Asthmatics prescribed them - and if reducing them would have any impact (positive or negative). As you know, there’s concern over the risks of inhaled steroids increasing lung infections and also of the numerous risks of Oral Steroids. There seems to be some anecdotal evidence that Inhaled Steroids ‘might’ (for some patients) irritate and ‘may’ contribute to a cycle where the very drugs deployed to help, end up contributing to (rather than relieving) symptoms.
Ref the antibiotics alongside Pred: understood that use of Pred temporarily reduces immunity and that the simulatious prescribing of antibiotics was to compensate for that temporary reduction in immunity rather than to fight any current infection.
Appreciate the points on Polyps and sinusitis. All things considered I think I’d like to try Dupilumab but don’t imagine I’ll be offered it, even though I use a lot of dermatitis cream. Best guess is that I’ll continue with Pred but may sign-up for the Research Program mentioned above as (although I think Pred is important for me) I have some doubts about Inhaled Steroids and I can quit the Research Program anytime and revert to my current level of Inhaled Steroids if things don’t pan out.
I take Vit D3 too and also a form of Tumetic called Opti-Tumeric that includes a carrier to assist in absorption which is otherwise poor for tumeric (Supplier Healthspan).
I get the same stringy mucus too. I do a lot of fast walking - usually 6 miles a few times a week, plus shorter walks too. Looking to buy an exercise bike as the road cycling round here is near suicidal.
Hi - wanted to answer your Q. I have oesinophilic asthma and sinus polyps. So I absolutely get the loss of smell, and improvememt with steroids. My doctors have always been iffy about getting me onto oral steroids due to some effects so I've really suffered. I'm desperately trying to convince the NHS to let me have Nucala. I have been told by a doctor that there is some improvement with sinus polyps as well as breathing (but it can't be prescribed for polyps yet)
Thanks. There are a few claims that certain Biologics might help with Nasal Polyps. The claims made for Dupilumab (currently awaiting European Medical Agency approval) appear to me to be the most promising, but - although it’s already approved by NICE for severe eczema, it will probably be late this year (or early next year) before NICE give their decision on approval for severe asthma. I’d be surprised if it was not approved, as I understand the FDA have recently approved it. Let me know how you get on with seeking Nucala approval. It seems the NHS like to prescribe Omalizumab before other Biologicals, as it’s been in use for several years now so more safety data is available and (I would guess) it’s cheaper than the newer Biologics.
Thank you for your reply. When I was in Brompton in August, I did the FENO test and mine started at 238 then 278 before reducing to 77 after 5 days of treatment. I'm now on 2 new inhalers, both of which my own doctor had not heard of - Ciclesonide and Anoro Ellipta in addition to Phyllocontin tablets and Prednisolone (40mg)
Let me know how it goes Matman. I don't prescribe antibiotics for exacerbations unless it is infective in origin in my current practice ( lot of pressure in GP to minimise antibiotic resistance ) but I appreciate the comments about reducing immunity.
How are you finding the new combination of inhalers asthmagirl? Those are some high FeNO values- I hope the medication is helping
In all honesty, I'm not sure about the inhalers as I am back on steroids. One thing I have noticed is that I have developed a cough which gets worse each time I use both inhalers. I'm on the long waiting list for the new injection which is apparantly specifically for this type of asthma. I too suffer with nasal polyps, I've had 3 surgeries but the pesky things still grow back.
I hope you get mepolizimab soon. How was the sinus surgery? How long did it take to recover from it and how long was it before the polyps returned/ sense of smell vanished?
Each time I have had surgery, it takes a week to two weeks to recover. Unfortunately the polyps have grown back quite soon afterwards, 6 weeks in one case. I have no sense of smell until I am taking steroids then it reappears but makes all food taste like it has a twang. I have polyps again now but they are not causing me too much trouble yet but I know that will change and I will require surgery again at some point.
Crumbs. Six Weeks for grow back. That's very unfortunate. May I ask how many times you've had the Polyps removed and what the average grow back time has been in each instance?
I'm doing a Swat on Polyp Info at present and one of the things I read is that if - during the months after Surgery - you have two separate periods of Oral Steroids - that can help in some way. Not sure if doing that is meant to prevent (or delay) the return of Polyps.
Wondering if 'Daily' Oral Steroids rather than taking them in 'Bursts' a few times a year might help?
I'm definitely NOT one for 'alternative' remedies, but I might even start looking into what's on offer from the Hippy Brigade (bless em). Wondering if there's something (Natural) with less Side Effects than Oral Steroids which (just like Oral Steroids) can see-off excessive Eosinophils.
Been using Self-Applied Saline Nasal Irrigation Daily for several weeks, as was told 'it can't hurt'. But now starting to wonder if flushing out Nsal Mucus just makes it produce even faster because Nasal Airways need mucus to capture debris that gets up you nose. (If Asthma UK Person reading this - any insights please?)
As you'll have seen from the Posts and Comments on this page, I've mentioned Dupilumab. This is a MAB that's been approved in the UK for Severe Dermatitis Suffers (not yet 'Asthma' suffers) but is actually showing half-decent results for 'some' (not all) kinds of Asthma. As Upper Airways (including Nasal Passages) are pumping out Mucus and giving rise to Post Nasal Drip, then maybe fixing the Nasal / Polyp Issue will reduce Asthma exacerbated by Nasal Mucus.
One USA Dupliumab Study found that a surprising side-effect was that some patients experienced an unexpected improvement with sense of smell, and that the improvement was still present into the 'mid-term'. So, I'm guessing, that means Months rather than just weeks. (Did it shrink Polyps to achieve this - can't remember, but would guess 'yes').
You may want to do some web research on it and - if persuaded - maybe raised it with your Consultant at the Asthma Clinic you attend.
Just found this 'very' informative 2017 Article on Type 2 Asthma
2 or 3 years back - when an occasional dose of Ventolin was all I ever needed for 'good' Asthma Control - I was encouraged to use a Preventer Inhaler but (after two or three tries) I dropped the idea and stuck with Ventolin until (at the beginning of 2016) I caved in and started using one regularly (I'm sure it is the LABA rather than the inhaled steroids that made the big a difference - essentially LABA use is like being on Mild Ventolin 24/7 with your airways always being kept open with a Brochodialtor, rather than for just a few hours a day following a dose of Ventolin).
Previously, I had found that the Preventer seem to irritate my lungs. There has been some work done that questions Preventer Inhaler use, but we're caught between the devil and the deep blue see on this one.
Inhaled Steroids are suspected of increasing pneumonia / other infection risk.
Another line of thought suggests that their impact on the lungs creates a cycle in which the irritation they cause means you need to take more inhaled meds no compensate.
Do the benefits outweigh the (possible) downsides - probably 'yes'.
Need to keep experimenting with new Inhalers (trouble is NHS Cost / Budget Cuts). Body gets used to what we chuck into it every day and starts to deal with what we're giving it in 'modified' ways - meaning a change may (sometimes) give us improvements for a while.
So to answer your question yes- if you are well controlled it is possible to have a normal eosinophil serum count. <0.3 indicates you are on the right track and in my experience I'm usually asymptomatic unless my count is > 0.5
Hi Matman, I'm a bit late to this ans there have been some interesting discussions - didn’t know about eosinophil count varying by time of day.
Just wanted to say I'm at tertiary centre where the lead cons is very keen on FENO so I have done it a lot! Cons has eventually decided I don't have eosinophilic asthma because I either have low (on pred) or normal eosinophil counts but other things like spirometry/reversibility testing, frequent attacks suggest I do have asthma which is not that well controlled.
My FENO tends to vary - it was low to normal when I was constantly on pred (due to overlapping courses and tapers) and now varies between normal, high but not ultra high (48 to 58) and around 37 which my cons says is 'ok for an asthmatic'. It's used to decide whether I should get pred or not ie is there airway inflammation which pred may help? I get attacks requiring hospital admission every few months and sometimes I have normal and sometimes high FENO. The FENO seems to make zero difference to the severity of the attack, just means the asthma nurse gives me pred first or not. A and E and the acute medics do not care about FENO and will give me pred anyway- had one who knows my cons suggest that FENO is not helpful except in clinic.
So basically for me, FENO seems to be independent of eosinophil count. I used to get annoyed when they told me my eosinophil count was normal which was good. I can have relatively bad attacks with totally normal eosinophils and FENO or with raised FENO and normal eosinophils so at least in my case it appears the eosinophils are not driving it, but sometimes something is increasing the FENO. Not infections as I rarely catch things (if I do lungs gate it but I haven't had enough of those attacks under the new team to know what it does to FENO).
Thanks for that. Both interesting and useful. Seems that a lot of scope exists for variation, and that Phenotype Labels (like Eosinophilic) are not necessarily conclusive. Apparently recent thinking is to look for tighter, more reliable definitions termed Endotypes. These are an attempt to tie down more precisely the specifics of an individual’s Asthma plus the best Meds in each case.
Hi Matman - just seen this, which is a debate about FENO at an ongoing US congress. Thought you and others may find it interesting (Mods: is this OK to link to? It's a research update, nothing to do with me and not peddling any dodgy treatments!)
I've also got eodinophilic asthma and I am on a waiting list for mepolizumab.
There is another MAB - reslizumab - what's your opinion on this one ?
I was told by an immunologist that eosinophils can be reduced by LDN- low dose natrexone , tried to take it but had lots of side effects so stopped
I also have been told by an immunologist that after polyps surgery they can do aspirin desensitisation so polyps won't come back too soon but I will have to take aspirin every day after that so I refused
I tried relvar ( cough a lot on it),
Seretide ( short of breath ) and fostair ( have lots of side effects)
Prednisolone doesn't do much for shortness of breath but ok for cough ,Salbutamol never did much for me so I wonder if I should try steroid spray without LABA.
I feel short of breath most of the time ( trying to take deep breaths).
Also have joint pain, polyps, now numb hands so was reading today about Churg Strauss syndrome , just wonder how high eosinophils level usually is for Churg Strauss .
I’ve not heard of natrexone but will now look it up,
Interesting point on the Aspirin too.
Regarding reslizumab, I have looked that up but decided it might not be for me (not saying it wouldn’t suit some folks needs).
You probably already know this but - by using the ‘News’ SearchOption on the Chrome Browser (plus limiting the Results with Google ‘Tools’ to the number of days, weeks or months you want to search back for) you can quickly pull up the latest developments on the specific Meds you’re interested in.(Every month I do a Search like this for ‘Asthma’ - searching back only ‘one month’ - to keep up to date, then scan the first 20 Pages. I also do the same for any Meds I’m monitoring.
Also, the Chrome Incognito Tool can often get you into Med Sites that a standard Browser Search may not - assuming you know the Site name you want to access. (Apologies if you're already Tech Savvy on these points).
Hi, I am just looking into low dose naltrexone which I was told about too, Can u tell me what side affects you had and what dose u started on please, also did u discuss with consultant? Sorry for all the questions
Hi, I tried LDN a few years ago , mainly had gastric ( stomach aches ) side effects . I don't remember the exact dosage but I think I dissolved 1 tablet in a litre of distilled water and was supposed to drink about 50 ml a day
I tried to discuss it with my asthma clinic consultant but he never heard about it so couldn't comment .
Unfortunately our asthma clinic doesn't do the induced sputum, advance endotyping or serum periostin tests - do you know where they can be done privately ?
I think those tests are usually done in specialist tertiary clinics as other places don't have the equipment or expertise to do or interpret.
Mepo etc are usually offered only by that kind of clinic though so are you already seen at one of them? They may not do all the tests as some are very heavily research based still so you may not get them outside a clinical trial. I've never had any of the induced sputum tests even though.I am at a tertiary centre (not sure if cons just doesn't think they are needed).
Have you asked about other relievers? Some people get on better with terbutaline (Bricanyl is most common brand) but you would need to ask since salbutamol is the standard one.
Polzovatel- churg Strauss is a differential diagnosis of high eosinophils- another blood test called ANCA is usually positive- your consultant will probably have screened for this but worth asking at your next review.
Blood Eos correlate well with sputum Eos therefore in clinical practice I think it doesn't change outcome to just measure blood Eos. Again measuring periostin etc I think this will only be done if you are in a research study (and they may not tell you the results) or perhaps in the work up for a biologic but I'm not sure on this.
Use of a LABA without an inhaled steroid is risky business- (increased risk of death) therefore you will struggle to find a doctor who will prescribe a LABA that isn't in a combined inhaler for asthma. Use of Long acting muscarinics such as tiotropium are sometimes used in severe asthma- spiriva respimat is currently the only licensed one for use in asthma as far as I am aware.
The only thing I was told that can suppress the Eos are steroids- oral or inhaled at high doses ( if your asthma is not refractive to them) or biologics.
The studies looking at the increased risk of pneumonia in high dose ICS is mainly in those with COPD but you are right to be cautious.
With regards to nasal disease in Eos asthma- I too have tried nasal douching with a mixture or bicarbonate and sea salt as per ENT advice- I used it twice daily- high volume with high pressure and I felt it made no difference. The theory is with the biologics (e.g. Mepolizumab) is as they are affecting Eos movement into the lung/sinus/ upper respiratory cells it should help reduce/ correct the problem. So they may reverse some sinus disease/polyposis. The problem with nasal corticosteroids is most is deposited in the lower nose and sense of smell and the sinuses are higher up and harder to get the drug to where you need it. There is some use of budesonide nebuliser fluid being added to nasal douching bottle and then squirted up the nose- but I think this is largely in the research stage ( I discussed this with ENT and they said they didn't recommend this) - also I think this is only really going to get to the area of concern after sinus surgery when the entrance to the sinuses is larger . I have found if I exercise at high intensity I get sense of smell back for about an hour- I imagine due to enhanced blood flow/ shifts in mucus - this is the time I grind the coffee beans to remind myself of the smell! Other than that I'm stuck in a cycle where I get a 4 week grace period of return of smell with oral steroids before a gradual decline
Lots of points for the notebook in above Comments.
Ref Oral Steroids, anyone know if there’s a formula — possibly based on dosage size, body weight, height, age, length of time taken etc - for anticipating when major risks (such as adrenal failure) might manifest? (What are the early warning signs to look out for?)
How often should Tests be done to see if Oral Steroids are causing major problems (and what Tests should be requested)?
I know there’s a bone density Test but don’t know How often I should have one, or how frequently I could reasonably expect my GP to oblige with one.
Do serious problems only occur after X Years useage (and how many years is X)?
Are risks greater for certain age groups (which ones)?
Is ‘Burst’ Dosing generally considered safer than smaller ‘Daily’ Dosing?
Also (other than Vit D3 + Vit K2 + Calcium via Dairy) is there other stuff, Meds included, to counter / minimise Oral Steroid Risks? (Note, K2 comes with its own risks as - among other things - it’s a Blood Thinner and may not play nicely with your other Meds - especially if your other Meds effect blood thickness. Likewise if you’re due for Dental Work or any kind of Surgery you need to tell someone if you’re on K2 well in advance of having the work / surgery done. So get professionslaught advice before starting K2).
Could do with reading an (up to date) professional article about Oral Steroids if anyone knows of a good one.
Oral steroids for short courses with an exacerbation I would say would be less damaging than daily prednisolone. There is no formula that I am aware of.
Number of courses and duration of courses are all important factors.
Re bone density if you have 4 courses pred per year I'd suggest you had a DEXA scan- the metabolic bone consultant will then based on the density and your condition suggest on the frequency of repeat treating. Osteoporosis risk is also determined by age, sex, and other RFs- including diet , BMI , exercise , whether you smoke etc.
Re Adrenal suppression- at doses of full dose fostair you would be extremely unlucky to come into problems- I think on very high dose ICS there is a risk - if you have low BP/ vomiting etc - these could be signs. On high dose ICS the risk can come with adrenal reserve- I.e. If you become unwell with an illness your body may require more steroid putting in to help fight a response . The other thing with the adrenals is length or oral pred courses- certainly when I worked on respiratory wards often in an eosinophilic patients the consultant would give a 2 week course of pred for exacerbations to suppress the eosinophils. I think it is general consensus that if you need longer than 2 weeks of oral pred you will need to wean off them slowly as the risk of hypoadrenalism becomes real. The minimum course length for oral pred for exacerbations is usually 30mg for 5 days and I think at this level you would be unlucky to come into difficulties. You can get a 9am morning cortisol blood test if you are worried about the adrenals but it can open a can of worms as if you require all the steroids to control your lungs it becomes difficult to know what to do with a borderline result. My advice would be to discuss with your consultant if you have concerns.
Re supplements - vitamin d sounds wise. Mass supplementation with calcium- be careful as excessive calcium increases the risk of heart disease- if you have dairy and good calcium in your diet you probably don't need the calcium. Re vitamin k2- what are the proposed benefits of taking this?
Ref the Fostair 200/6 that I’m on (4 Puffs a day): Apparenly, due to the formulation characteristics, this equates to the highest daily level of ICS allowed (per my Consultant)
As I also take a Nasal Steroid + 40mg Oral Steroid Bursts (for 7 Days) when necessary, I tend to consider the annual Steroid loading as an aggregate of the three, as I think that’s the best way to understand what I’m dosing.
I’m not conscious of any specific problems yet, just want to ensure I know what to look out for, plus what Regular Tests to have (and how often). Your comments on this were most useful and have been noted.
I’m considering declining the MABs I’m due to be offered and sticking with Oral Steroids on an ‘as and when’ needed basis.
I’ll be getting a second professional opinion on my thinking concerning this. I’m interested in next generation MABs but, if I accept current generation, I may lose eligibility.
Ref K2: Important (my view only) for ensuring Calcium gets into (and remains in) the bones, rather than - potentially - increasing arterial calcification due to leaching into blood. Particularly important (my view only) if you’re driving up calcium (via Dairy or Supplements) to compensate for depletion due to medication or other issues. Nb Personally, I would not take Calcium Supplements unless I really had too. I don't buy into the notion that Dairy is risky for Asthmatics so will consume more and work off the extra weight it might bring. (No doubt someone, sometime will prove me wrong).
Anyone reading this who is not a professional medic should seek professional guidance first on the K2.
RANT ALERT: As mention elsewhere in this thread (and in greater detail in a Post I did a week or two back) I personally consider the stark Potassium depletion warning in the Patient Info Leaflet for Fostair a ‘very big deal’. Hardly anyone who does NOT suffer from Asthma (and therefore has no need of an Inhaler) gets anywhere near the three to four daily grams of Potassium RDA (USA 4grams / UK 3 Grams). Potassium is the main reason we’re told to eat 5 to 10 Portions of Fruit and Veg a Day (and you can’t safely supplement Potassium above 100mg per day). Last thing you want is Potassium depletion, due to Meds, to add to your problems. (Note, am aware that older folk retain more Potassium but do not consider that this mitigates the risks of depletion by Meds).
Apparently (according to Fostair) other Inhaler Brands carry similar risks. (So don’t forget to carefully scuntinize your Device’s Patient Info Leaflet).).
I can't improve on the professional answer, but from my own experience it seems people vary in how much pred it takes for adrenal issues to develop.
I am waiting for the results of my synacthen test - had 15 month period plus 1 year period plus multiple short courses since 2013 on various doses of pred but only recently started to be unable to come off pred entirely. I tapered off the year long course in Feb of this year and the next course of pred after that I was careful to taper off - they tell you no need with short courses but the last month and a half of my year were basically me inching down from 5mg very slowly and often having low cortisol. I
In July I stupidly listened to the standard advice (bit cross that they didn't listen on the cortisol thing actually at that point as I asked) and didn't follow my own experience on this - went 40mg 7 days then nothing and immediately felt terrible with low cortisol symptoms. I then couldn't get below 5mg witbout getting low cortisol symptoms so was sent for synacthen test.
I have never had a crisis but low cortisol symptoms I find are noticeable and bad enough - I can't think, make awful mistakes at work, very tired and low - all improves with a bit of pred. I first noticed this a few years ago with a cons who absolutely should have known better but told me I should drop straight off 4 weeks at 40mg to nothing because I didn't need any more and side effects are bad. I actually went to 5mg first but still felt dreadful.
I have been on high dose ICS for a while too and also noticed these symptoms when I dropped dose temporarily when not on pred (a different cons telling me I took too much. Didn't work out from any perspective.
Sorry for the ramble but just wanted to share my experience. I have had 2 DEXA scans, both very good (got congratulated on my childhood milk drinking lol). I do take Vit D and have been deficient but have enough calcium in my diet and have also been told not to go overboard on that.
Oh and pred totally squashed my eosinophils! Now I'm on short courses as needed (still several a year) they are normal - this does not seem to be eosinophilic asthma!
Appreciate the detailed reply. I agree entirely with the tapering-off (if taking Pred Burst for more than 5 Days). I find I need it for a minimum of 7, then reduce by 5mg per day. When I had a severe Chest Infection I needed it for three weeks. I don’t like taking it for more than 7 Days though, especially now it seems to be the case that 40mg Per Day (rather than 30) is the recommended Daily Burst Dose.
As you know, a portion of ICS goes systemic, including the portion that deposits in your mouth and throat. Can’t recal whether Powder or Standard Inhaler is worse, but certainly a fraction of ICS at high dosage does go systemic. If using a non Powder Inhaler then an aero chamber can (I think) partly reduce the systemic issue from high dose ICS.
I have been to see the specialist today. Spirometry down at 70% of best, FeNo raised so it's back on the prednisolone for 7 days. Writing this 90 mins after taking the prednisolone some of my sense of smell is already returning- incredible how quick it begins to kick in really!
It has been suggested for me to try uniphyllin (theophylline)- anyone used this before? Apparently before the biologics are used its important that they can demonstrate you have tried (and failed) with all the conventional treatments. Reading the potential side effects list is a little scary though
Sorry to hear you’ve hit a bit of a bad patch. Hope you feel better soon.
Have only a superficial knowledge of uniphylin so cant contribute anything useful on it.
As I’ve been told that I’m now (theoretically) approved for a Biological I’m guessing (from you’re remarks) that I too might be encouraged to try theophylline or something else - as an interim measure - in order to demonstrate everything has been tried.
As indicated earlier, I’m getting a 2nd Consultants Opinion on the proposed biological, but my default position (unless convinced otherwise) is to stick with my existing regime, until I’ve fully convinced myself that the benefits of the MAB on offer (or any other alternative drug) is really worth the switch.
Have you done much in the way of research on the MAB you’re hoping to be offered? (And how convinced are you of the potential?)
If they change your Meds, might your Pred be rationed? (Given the oral steroid helps you so much, any compulsory reduction to accommodate a different drug might not be an attractive proposition).
BTW, the worsening of my allergic eosinophilic asthma (like your asthma) seemed to coincide with the commencement of a period of home environment change (building work, dust etc) a couple of years ago.
Don’t know if I’m imagining it, but this year seems ‘slightly’ better than last, and I’m wondering if the allergy impact of the change I’ve mentioned might - very gradually - diminish with passage of time (fingers crossed).
Sorry to hijack but just wanted to say that I don't think they always make you try everything first. From what my cons says he never puts anyone on theophylline/aminophylline - if I had come to him without it and were eligible for a mAb I would be on it.
Also if it helps either of you, I think it is entirely possible to switch mAbs though would require a washout period. I know someone who was on Xolair and now mepo after a break and sure there must be others given Xolair was the only option for ages but mepo is probably better for some of those who were on Xolair. So if you went ahead it wouldn't necessarily close you off from newer ones. Quite possibly from trials though if you wanted to get on those.
Thanks for that. I was guessing that - because of the huge cost of biologicals - the NHS would be more likely to offer them to patients who had not yet tried them, rather than offering users already taking one, a second opportunity to try a different MAB.
I think they'd weigh it against other things - eg did the first one actually work, and ideally against the cost of frequent admissions and steroid side effects to the NHS. I also have an idea that these days it is much harder to refuse a mAb or similar treatment which has been approved by NICE, providing you meet the criteria. They already made some effort to reduce costs by requiring blood eosinophils >300/microliter, although there was some efficacy for the >150 group in trials. They used to make it really hard to get Xolair even if you were eligible, but changed that and I believe have the same criteria for mepo ie can't refuse if you meet criteria.
I have my eye on dupilumab, which has shown efficacy in non-eosinophilic groups as well as both eosinophilic groups. However, I have a nasty feeling that even if it is approved in Europe regardless of blood eosinophil count, NICE may restrict it like they did mepo - it was more effective for higher eos blood counts in the trials.
Or maybe they will take pity if someone points out to them we uncontrolled non-eos types have nothing right now!!
Hi, glad the pred is helping! I have been on aminophylline (Phyllocontin Continus) for 4 years now and it seems to work well for me. I was also really worried before starting but have never had any problems despite its reputation. It does have a narrow therapeutic window and some people cannot tolerate it but for me (and others I know) it can be effective and well tolerated. Someone pointed out (and I agree) that reading the patient leaflet or product label will inevitably make you wonder why anyone takes it as it is an exercise in ass-covering by the pharma company.
I am actually having an argument with my consultant atm about it. He hates it, thinks it's old fashioned and has too many side effects. I can see his point but at the same time for people like me who can tolerate it and aren't eligible for current biologics, it seems worth keeping. He did grudgingly admit it might be helping. I pointed out he hasn't got anything better and I'm not bothered by side effects so can he please leave it alone! I have won for now but suspect this is not over.
You probably already know about titrating up to full dose and getting regular blood tests? (I admit, I haven't...but have been ok.) I take it at 10 am and 10 pm roughly - like to keep levels steady. I admit twice daily dosing is a PITA but it is effective enough to be worth it for me.
Actually we have opted in the end to add ciclesonide to fostair instead for the time being as I've had palpitations before so he has opted not for theophylline.
It's omalizumab that would be offered first but I would require one more exacerbation before Jan to qualify.
From researching I think I'd be happier to try this one first as there is 12yrs of safety data and thousands of people who have tried it. I agree some of the newer Biologics sound promising too. My consultant thinks I would likely have a very good response with omalizumab but obviously there is no way of knowing unless you try it. My understanding is the asssssment period for omalizumab is shorter than mepo meaning if it doesn't work you can always switch.
Yes, i agree - when needed pred does work- so if I can find a combination of ICS that holds things at a level where exacerbations are only once to twice a year then I'd be happy to stick with it...this year this is exacerbation number 3 - last year I actually went almost 1 year but peak flow dip and symptoms were niggly for 4 months or so but not quite at the stage for pred.
If I can hold things on conventional treatment I will stick with it for now but it's nice to know there are options available. I guess it's all about balancing the pros and cons and the current affect on quality of life
Yes there suddenly has been a deterioration since the house change- and my allergy panel is high for house dust mite but I have made many changes including lifting carpets etc to minimise exposure- time will tell I guess !
I'm not in the UK, but I found this topic and decided it applied.
I'm recently diagnosed with eosinophilic asthma. My eosinophils seem to vary, though. Usually they're high, and so is my IgE (slightly), but I think I had normal eosinophils once, and I'm not sure why. They have, however, only run the blood test and not the sputum test.
I've had asthma since I was in my teens, but never had it as a child. I was actually a very healthy child. However, in my adult years, I find that not only do I have asthma which I cannot control with inhalers much (I need nebulizers, and my insurance won't cover preventative nebulizer medication). I also find I'm very prone to ear infections. My doctor told me eosinophilic asthma is the cause of the frequent ear infections, but since I'm doing better now, I don't need the injections just yet. Neverthless, I feel my asthma could be better controlled.
Thanks for that. Lot of points to consider. Will give them support. Planning to reintroduce 75mg Aspirin Daily but imagine it will initially make my breathing more difficult until things settle down.
Hi Matman, I have never heard of an eosinophilic asthma diagnosis with a low eosinophil count. My high count precipitated my need to go on a biologic which helped me stop steroids and keeps my eosinophils low which keeps the inflammation low as well as the FENO. I take Nucala (mepolizumab)...there are many out there...you should speak to your dr. Good luck Hannah
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