I was misdiagnosed with lupus about 11 years ago, originally based on tests following analysis of a knee aspirate from a soccer injury! They were suspicious because of an unusual distribution of white cells in the aspirate. Now the fog has cleared and lupus was eventually discounted, it is my eosinophils that have remained elevated. My asthma progressively got worse until I could not run and had to give up soccer. As an RN, I understood the strategy of diagnosis and medication. The most probable diagnosis will most likely be helped by the standard medication. Now I have read about the new biologics (Xolair, Nucala) that treat, with dramatic results, eosinophilic asthma. The trouble is, they cost $2,500 to $3,000 per month for life!
What I fail to understand from the literature is whether asthma is an either/or? Is it allergic asthma or eosinophilic asthma - and I know I am generalizing. And is there a specific treatment for both? Such that treating eosinophilic asthma with the standard therapies (Symbicort, Montelukast) will do very little? I see very little improvement using these two meds? But is my only alternative medications that I cannot afford?
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truebrit
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Hi truebrit, I’m struggling to understand the same thing. I was recently diagnosed with high eosinophils ( I have asthma, nasal polyps and angioedema) and they’ve put me on Fostair, Spiriva Respimatt and Dynamist. There was some talk of the biologics but it seems like my two doctors might not agree. I would dearly love to understand the root issue! Sorry I can’t be help.
I have always found this confusing, too, because eosinophils are produced as a natural response to an allergen. For instance, I have raised eosinophils because I have hayfever. However, I get the impression that, in eosinophilic asthma, the raised level doesn't reduce in the absence of the allergen; consequently, the symptoms persist, and may not be so readily controlled by conventional asthma treatment.
However, there do seem to be a lot of people on this forum who have the condition and would be in a better position to advise, as would the nurses at Asthma UK.
My eosinophils have always been high regardless of time of year. AND, since diagnosis, I have changed countries (city for a village, sea level to mile-high mountains) which should somewhat rule out constant environmental exposure. So I cannot isolate anything external. I know there has to be a reason for elevated levels - but what a mystery!
There are hints that what you have may not be something that requires asthmatic medication.
The legs are tied into the lung breathing system. You can get reflexes which cause the chest to tighten. A tightened chest will result in breathing difficulties. Breathing difficulties tend to get labelled asthma. This results in meditation for asthma.
Google "Thomas Myers". Google "Anatomy Trains". See a sports therapist see if they can help you work on the leg - chest relationship. See an Alexander Teacher for help with posture. You have strong muscles related to soccer training and playing. Strong muscles can do unhelpful things that you may be unaware of.
This is there for you to investigate. I may be totally wrong.
Thank you, John. I always check sources and it seems these trains are also postulated under a different name in Rolfing. Rolfing was Thomas Myers' training. I just cannot find any evidence that fascial manipulation would be helpful. "A 2004 review of Rolfing found that "there is no evidence-based literature to support Rolfing in any specific disease group"
Jones, T.A. (2004), "Rolfing", Physical Medicine & Rehabilitation Clinics of North America 15 (4): 799–809, doi:10.1016/j.pmr.2004.03.008
Thanks for the reference. You need to look at how the evidence is obtained and the criteria that is applied before it is considered as evidence.
From medical evidence criteria there is no evidence and probably never will be. Looking at different criteria where you are looking at reduction in system stress and better functioning things change.
Rolfing is not the same as what Thomas Myers does. Thomas Myers trained in Rolfing and developed his own understanding. My Alexander Teacher who happens to be a trained physiotherapist has taken a number of professional courses on fascial release system as taught by Thomas Myers. I have been given a little practical experience of it. It does make a difference in how the body functions. Medical literature does not deal with engineering systems and does not understand the stress breakdown point in the way an engineering system works. Medical literature has tendency to ignore feedback systems.
On page 1 in the book “Fascia What it is and why it matters” by David Leondak there is a quote by Gisela Draczynski. It says:
“Experience teaches that it takes years or decades for new fundamental insights in medicine to become common knowledge among doctors.
‘Additionally any body of knowledge that reveals linear (or) causal relationships is more easily understood and categorized than those that reveal relationships that are multidimensional’"
What I can do with my hands does not exist as far as the medical literature is concerned. Hand sensitivity depends on innate existing skills and training. This training does not exist in the traditional medical profession, but does exist in the complementary.
In these sort of things you rely on the hand skill of the complementary practitioner. You have to network with people to find someone with the appropriate skills.
Often it is not about cure, but better management. This involves learning about things other than drugs. It has a very large component of brain - body interaction. As well as spinal reflex action.
In this sort of thing is very difficult to determine what is related to what.
I am not opposed to anything that might not be currently understood, as long as there is objective evidence based on a sound logical methodology that proves it works and is reproducible, verifiable and, most of all, falsifiable.
Thanks for the reply. For a lot of things in the complementary there is no sound methodology as in the medical sense. It is not reproducible as in the medical sense. The medical person looks for X and compares to Y. You have test machines for this.
The complementary works on something it finds. This reduces the stress on the body's engineering system. The stress being taken down enables the body's engineering system to work better. Sometimes very much better because the stress on the body's engineering system has dropped below the stress breakdown point.
I can work on various aching joints and backs. This is not reproducible because my ability to do this is dependant on how much pain I am in and how tired I am. It is also dependant on a number of factors like patient is able do what I require of them in control of muscle behaviour. This is very different than giving everyone the same treatment because someone who uses their hands cannot give everyone the same treatment.
Is what I do falsifiable? Yes it is because what I do may not work on some people.
When you do hands on musculo-skeletal work some things that requires 'Y' to be released will not work because Z has to be released first in this particular patient. Medical trials do not recognise this. Medical trials will only recognise that you must work on 'Y' and refuse to allow you to work on 'Z'.
My Alexander Teacher was involved in an Alexander Lesson versus traditional physiotherapy trial for a small cohort of people. Alexander lessons showed better outcome. The problem was the cohort was too small. The person who arranged the trial applied for a grant to do a repeat trial on a much larger cohort. No funding could be obtained to do the trial.
This is one of the problems. Plenty of money for drug trials because a manufacturer of drugs stands to make money. No money for trials in complementary because the trial must be done using multiple therapists. No one organisation stands to make money.
Each person must do their own investigation and network in their local area to find if there are people who may have something useful to offer in the management of their condition. This is very different than the medical model of treatment.
Americans spend $34 billion every year on alternative/complementary medicine. There is money for trials. Imagine how much more they could make if they could legally claim that the product works? My friend is a Reiki practitioner in New Zealand. She offered to cure me over the phone. Her reasoning was almost identical to yours. For this reason, the double blind trial - which all FDA approved meds must undergo - is the gold standard in logic.
For medical trials maybe. For drug trials maybe. For trials where hand sensitivity is needed I have no idea how you can do a double blind. I also have no idea who will put up the money.
In many trials of certain drugs the patients know who has got the counterfeit pill and who has had the drug. The double blind trials is considered the gold standard. It has problems. It has problems with diagnosis and cause.
Get a copy of Anatomy Trains by Thomas Myers. What it says is different than classical medical anatomy. I cannot verify the truth of what he says. I have verified for myself that there are connections from one part of the body to another.
Hi, I would say it's definitely not an either/or especially with allergic and eosinophilic! Some people are one or the other (raised IgE or raised eosinophils) but there are people with both, and there have been studies showing that people on Xolair have reduced eosinophils. There are people on here who have been eligible for both Xolair and Nucala.
However, it's not just about these drugs. Generally, the research into and understanding about asthma has for years been focused on the allergic and more recently also the eosinophilic side - I would say a lot of the standard treatments for 'asthma' are focused on this pathway - for example steroids tend to reduce eosinophils, and markers that assess response to steroids (including steroid inhalers) are also associated with eosinophil levels.
I have non-allergic, non-eosinophilic asthma, but that gets complicated because I do respond to, and need, a high dose steroid inhaler (Fostair Nexthaler 200/6). I also take montelukast, which definitely doesn't work for everyone, and I've been told it shouldn't work for me, but somehow it does! Yet there are people with allergic/eosinophilic asthma who find it does nothing for them. I also take Phyllocontin (aminophylline tablets), which is an old drug and a bit of a mystery I think - doctors aren't always keen on it due to side effects but it seems to have various effects on both the eosinophilic and allergic pathways and on others). I also take Spiriva Respimat - again recommended for people like me because it works more directly on the airways so doesn't need there to be eosinophilic inflammation.
This is getting a bit long but is hopefully making sense! The bottom line is: not all medications work for everyone, and it's not always as easy to identify who will benefit as just looking at 'allergic or eosinophilic'. If Symbicort and montelukast don't work for you, I would definitely say there are options before the expensive biologics.
I would say call the Asthma UK helpline but it looks as though you are in the US? Do you have a primary care doctor or pulmonologist you could ask about this and ask if you could try a different inhaler/inhalers? Sometimes people really do find one does nothing at all and another one really just works for them, and it's so hard to see why!! I appreciate there may be insurance hurdles in the US, but if you possibly can go back to your doctor and ask to try some other meds since yours aren't working, this might make a big difference without needing to look into biologics.
Thank you so much for your time in explaining this. I am British, but as a non-resident, I cannot take advantage of NHS. I was raised in South Yorkshire where air discharges from the chemical plant (extracting coal tar and phenol from coal) which was next door to the playground sent us scurrying down the air-raid shelters (which existed for quite a while after the war) just to reach some stale, but less caustic air. Nylon stockings on the clothesline would dissolve and gravestones were etched smooth by the air. I am sure that cannot have helped my lung development. I actually live in Mexico now, but I have US health insurance from the employer from which I retired. Mexican healthcare is very much 'try these and see if they work' - usually samples left by reps. To be honest, I have never experienced dramatic success with any meds. Maybe I would be worse by not taking them; there is always the bogeyman of irreversible damage from non-medicated lungs. I am on this site to get educated through the experience of others. Thanks again for your info.
I do know from my experience (asthmatic my whole 52 years of life) that some things help. I don't know until I try. And in the case of montelukast, my sinuses flair if I stop it and my voice gets deep and peak flows drop if I stop zyflo. Although I haven't tried stopping anything since I started on Xolair. I just got my 33rd dose.
I have been eligible for both Xolair and Nucala. I was on Xolair for many years and am now on Nucala as of this year. Neither of them completely rid me of asthma and unfortunately neither can reverse the severe damage already done by it but I am alive and would almost certainly not have been by now had I not been on those meds. I have allergies which have caused many extremely severe asthma attacks, sometimes near fatal, and Xolair made me able to be exposed to most of them with much milder symptoms. It didn’t, however, stop me having asthma “just because” I’m the absence of environmental triggers. Nucala does to a large extent. According to blood tests my eosinophil count is near zero after 3 injections so it’s a big success for me. I have reduced my regular nebulised meds and am almost off oral steroids.
If you do end up needing drugs like these, try looking into programs by the drug companies who produce them. When I was first on Xolair the Australian government did not subsidise it at all so the hospital pharmacy board footed the bill for quite a while until it was put on the subsidy scheme.
Due to stupid bureaucracy here I am not eligible for Nucala under subsidy but both my consultants said (correctly) that I would die if I had to wait for the long and unnecessary washout period after stopping Xolair that our government insists on. So I have been granted 6 months of Nucala injections under a compassionate grounds scheme of the pharmaceutical company. I couldn’t believe my ears when I was told this news and the massive cost of what I am being gifted. I think schemes like this exist for a lot of expensive meds. If you end up needing to go down the road of biologics it’s worth looking into.
Thanks for the info. For the price of biologics, I was expecting to grow a pair of superlungs. The question of effecting reversible damage versus managing irreversible damage is something that has only been cursorily mentioned by my doctor. My doctor is a little over-positive and as such likes to cherry pick the positive as indications of a future breathing deeply.
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