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EXTREMELY long letter of doom regarding asthma meds! - helen-louise
baratron
baratron
EXTREMELY long letter of doom regarding asthma meds!
Regarding this post, a letter to my GP about my asthma meds.

What I wanted to write:
I am writing to complain about the way that various members of the practice have become obsessed with trying to reduce my asthma medication. I would like this letter to be formally added to my medical notes so that I no longer have to waste my valuable breath repeating myself.

What I actually wrote:
I am writing to formally state my frustration regarding various members of the practice constantly trying to change my asthma medication. I would like this letter to be added to my medical notes so that I no longer have to repeat myself.

My asthma is good BECAUSE of the medication and dose that I'm on. 200 μg of Flixotide (fluticasone propionate) twice a day suits me very well, and is the minimum effective dose. This should be the end of the story, except it clearly isn't considering the number of times people have attempted to reduce the dose or change to a different drug over the past year.

I have been told on several occasions that I am on a "high" dose of a "very powerful" steroid. I don't doubt that Flixotide is powerful, but I do doubt that I'm on a high dose. According to both the Glaxo SmithKline website "for medical professionals" and RXlist.com, the starting dose for Flixotide in adults is:

Mild asthma: 100 to 250 micrograms twice daily
Moderate asthma: 250 to 500 micrograms twice daily
Severe asthma: 500 to 1000 micrograms twice daily

My current dose, 200 μg of fluticasone twice a day, is in the middle of the "mild asthma" range, making it an impressively low dose considering my symptoms.

I feel that my asthma has never been taken adequately seriously because I have an unusual response to triggers. Indeed, for the first 13 years of my life my official diagnosis was "just a snotty-nosed child"; this despite the fact that I would be bright red, on my knees and coughing up thick phlegm during 2 out of 3 school PE lessons. Apparently, this was because I was "unfit" - something I found rather hard to believe while I was doing 5 hours of dance lessons a week as well as the enforced school PE. I was put on cough suppressant drugs several times as a child to clear up lingering coughs after cold and flu infections, but my peak flow was never tested until I saw a programme about asthma on the television and realised that I had all the symptoms.

It is true that it is extremely rare for me now to have the kind of asthma attack where my airways close up. However, what I do get is massive overproduction of mucus and phlegm, which is horrible. When I am exposed to a trigger or do too much vigorous exercise, I start coughing and find it hard to breathe, while mucus pours out of my nose. If the trigger does not go away or I cannot remove myself from the contaminated air, then I start coughing up phlegm, while feeling that my lungs are filling up with fluid. At that point, I have to take my Bricanyl reliever inhaler. This may cause the mucus response to ease depending on how bad the trigger was. Sometimes two inhalations are needed.

As an example of how severe my allergies to certain triggers are, it was impossible for me to go to a pub or nightclub from the age of 25 until the smoking ban last year, when I was 31. Even pubs and restaurants with a no smoking section were not good enough, because they rarely had good enough air filtration systems for the level of my allergy. I could only go to restaurants which were 100% non-smoking. After 5 minutes in smoky air, I am unable to get enough air into my lungs, coughing to the extent that I feel violently nauseated, and start retching from the sheer volume of mucus pouring down my throat. I love music, but for six years I could not go out to see live bands without having to wear a mask of the type used by workmen in hazardous environments. The mask has a PM10 filter and a volatile organic chemicals filter, and with the mask I could manage an hour or so in a venue before I had to go outside to fresh air. As you can imagine, this was a highly embarrassing thing to have to do, which meant I would only go to see bands that I could contact by email to explain the situation to, so they could explain it to the venue, etc.

My allergies have got worse and worse over the years. Now, I get the immediate coughing and overproduction of mucus response if another person waiting at the bus stop lights up. This is exposure for less than 5 minutes in the open air, but that hardly seems to make a difference. I have asked doctors and nurses on many occasions whether there are any specific medications that can help this type of allergy, and have simply received the advice "stay out of smoky environments". I did that for six years, severely restricting my social life as a result - but now I react to people smoking in the street, which is rather difficult to avoid in London.

(Having such a severe smoke allergy means that I also find it really quite insulting every time I get asked whether I smoke. I am not and never have been a smoker, but I understand that some government target means you have to ask this every so often.)

Smoke is by no means the only thing that triggers this allergic/hypersensitive response in me. Some of my other asthma triggers include:

● the dirty particulate-laced carbon dioxide produced by smoke machines (the other reason why going to see bands is difficult even now. Of course, normal CO2 is fine).

● virtually all hydrocarbons. The level of response increases depending on the chain length of the compound, so my response to kerosine and diesel at airports is appalling, and if I am unfortunate enough to walk or cycle past a road that is being resurfaced with bitumen, I will have to get out of the polluted air immediately so that I can take my Bricanyl inhaler. Coughing and wheezing will ensue for a further 5-15 minutes. I even respond badly to methane if I, for example, cook with more than one ring on the gas cooker at a time.

● some esters - typically solvents in some types of pen. I buy exclusively the brands of pen where I know the ink doesn't upset me. Even then I can be surprised by e.g. a new bottle of my regular Tippex-type corrector that I haven't left out in a spare room for a week to lose the excess solvent before using.

● virtually all "regular" cleaning chemicals, especially those in spray bottles. To do any kind of housework I must wear the aforementioned mask, to protect my breathing system from dust and inhaled chemicals. This is not so bad now that I have switched to environmentally-friendly products made from safe plant oils, but it can still be an issue with certain fragrances or compounds encountered unexpectedly.

● deodorants, perfumes and aftershaves worn by other people, especially if newly-applied.

● nail varnish and nail varnish remover. Pure acetone is not much of a problem, nor is isopropyl alcohol, but the combinations in most commercial nail varnishes are too much. If another person applies nail varnish while on the bus, I will most likely have to get off and wait for the next bus.

● the chemicals used in hairdressing shops. I cannot go to a hairdresser, and have to have my hair cut at home. Simply walking past a hairdressers while their door is open can have me doubled up coughing and wheezing. Hairspray is the absolute worst.

● the chemicals used in keycutting/cobblers' shops. I have no idea what these are.

● all salicylates that I have ever been in contact with. This insensitivity came on rather suddenly when I was 26 or so. If I inhale benzyl salicylate (oil of wintergreen - used copiously in toilet cleaning products), I will cough and wheeze for some minutes. Taking aspirin makes me cough and wheeze for over half an hour, and taking ibuprofen makes my throat close up as well as very bad coughing and wheezing for several hours.

Phenyl salicylate (salol) is a common chemical used in school laboratories to model the formation of igneous rocks, and the one time I supervised this experiment, breathing in perhaps a very small amount of vapour in a 20 minute session, I was up the entire night wheezing to the point where I could not lie down to sleep. This is most definitely not psychosomatic, because I did not know that salol was a salicylate when I encountered it, and I am randomly made ill by other people's bathrooms before I've read the labels on their cleaning products.

● Sulphur dioxide gas, rare in everyday life but common in school laboratories. Known to be an asthma trigger for many people. I do not, however, react to sulphites used as preservatives in foods.

● Ozone and toner, emitted together from many photocopiers or laser printers, especially if insufficiently warm. I avoid this problem by owning an inkjet printer/ photocopier and using it exclusively for my work.

This list includes only the chemical triggers of my asthma. I have not bothered to include things such as dust mite allergen, pollen and nitrogen dioxide (seen as a brown haze in the air on very sunny days in areas such as Kingston that are downwind of the M25) that can make me wheezy but generally only affect my nose and eyes; nor triggers of allergic rashes or severely upset digestive system. My body just is this hypersensitive to random chemicals, and I am fortunate that my training (BSc in Chemistry, MPhil in Atmospheric Science) has enabled me to identify almost all of my triggers precisely.

Perhaps I don't have conventional asthma because I respond by "drowning in snot" rather than by having my airways close up. However, the asthma drugs - particularly the Flixotide - help with the allergies or hypersensitivities when nothing else does. None of the other allergy medications I've tried have done anything, probably because they're not delivered to my lungs. Flixotide is orders of magnitude better than Pulmicort was, but Flixotide at 200 μg twice a day still barely controls the symptoms of my allergic responses. It does, however, work extremely effectively on my nocturnal and exercise-induced asthma, so I consider this the lowest dose which maintains control of my asthma symptoms.

I would like to talk about my exercise-induced asthma because I know that medical professionals are extremely keen on getting their patients to exercise as much as possible. Once I was finally diagnosed with asthma, I was on Becotide (beclamethasone dipropionate) from the age of 13 to 19, when it stopped working. Then I was on Pulmicort (budesonide) from the age of 19 until a few years ago - the dose was increased several times before it also apparently stopped working. Then I was put onto Flixotide (fluticasone propionate) initially at a dose of 100 μg twice a day, then 200 μg twice a day. I can honestly tell you that the first time I ever learned it was possible to exercise and get out of breath in a good way ("I have done cardiovascular exercise!") rather than in a bad way ("I can't ****ing breathe!") was last year when I first went onto the 200 μg dose.

On this dose, I can:
● cycle as far as I want to on relatively flat ground (up to 10 miles) without getting more than comfortably out of breath.
● swim in a chlorinated pool for as long as I want without getting wheezy, though I may need my Bricanyl reliever inhaler afterwards.
● ride waterslides, which involve both chlorinated water and climbing a great number of stairs to get to the top.
● cycle uphill, including steep gradients like Kingston Hill and Richmond Park. This may involve coughing up some phlegm and blowing my nose a lot, but the worst that happens is that I have to take Bricanyl at the top.
● dance - limited only by the level of evilness of my joints rather than my breathing.

On any of the lower doses or less powerful steroids, the best I could manage was:
● cycle on relatively flat ground for a couple of miles, as long as I had taken my Bricanyl reliever inhaler first. Episodes of uncomfortable out of breath/wheezing would be common. Hills were impossible.
● swim in a chlorinated pool for up to 20 minutes, as long as I had taken my Bricanyl reliever inhaler before and afterwards.
● occasional riding of waterslides with 2-3 inhalations of Bricanyl during the process (requiring a second person to fetch and return the powder inhaler from the changing room for me).

It is clear that for any number of reasons to do with my long-term health, it is sensible for me to be as physically active as possible. It is also clear to me that the only medication and dosage which allows this to occur is my current one.

I do experiment with my meds where it is safe to do so. I intensely dislike the number of medications that I have to be on, and whenever my asthma seems to be better for a while I attempt to reduce the dose of Flixotide back to 100 μg twice a day, or even 200 μg in the morning and 100 μg at night. These doses do not work for me. After less than a week on a lower dose I cannot reliably exercise to the extent that I want to, and my responses to allergic triggers are very much worse.

Thank you for your time in reading this letter. I hope that you now understand why:
a) I feel that I find it difficult to get medical professionals to take my asthma seriously.
b) I found it rather insulting to be given a beclamethasone inhaler without any consultation.
& c) I wish to remain on fluticasone dipropionate at 200 μg twice a day for the forseeable future.

Yours sincerely,
me


Is it ok?

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Current Mood: anxious anxious

8 comments or Leave a comment
Comments
brooksmoses From: brooksmoses Date: 27th May 2008 01:07 (UTC) (Link)
Looks okay to me, though I (regrettably) doubt it will get read all the way through. Thus, it might be worth making sure the key point of "we tried beclamethasone, and it stopped working" is obvious even to someone who skims it and reads the opening and closing paragraphs.
baratron From: baratron Date: 27th May 2008 01:18 (UTC) (Link)
veryfineredwine suggested I think your final paragraph,"Thank you for your time..." could be more assertive. "You have been my GP for $num years, and you've helped get my asthma better controlled in that time, for which I am grateful. This recent change in medication is distressing. I'd like to see you to discuss more appropriate drugs....

I understand both of your points, and they would definitely apply if I was posting the letter. However, I'm going to take the letter to a consultation with the doctor in question, where I will discuss it briefly and leave it for him to read properly outside of our pathetic 10 minute slot. I'd originally planned to drop it through the surgery letterbox (it's just down the road), but then my leg decided to start falling off, and I need to go & see them about that. There's something Wrong with my right hip, which has induced a problem in my right calf muscle, and it needs attention in case it's serious. It's been bad enough that I considered A&E except that, me being me and having had crap joints for years, I don't see the point of seeing a doctor who doesn't have access to my complete medical records. I'm *hoping* that the records at my current GP still contain all my previous X-rays from two GPs ago.

I actually have a list of about 7 things that I need to discuss, but 10 minute slots are not enough, so it's only ever the most urgent 2-3 problems that come up :/ Why do I have to be so unhealthy?
redbird From: redbird Date: 27th May 2008 01:11 (UTC) (Link)
I think it's okay, with one exception: given that it is a very long letter, you might want to make clear at or near the beginning that you object not only to their attempting to reduce your dose, but to their changing your prescription without any consultation. Otherwise, they may make a note "if she's on fluticasone dipropionate, it needs to be 200 micrograms twice a day" rather than "she needs fluticasone dipropionate, 200 micrograms twice a day."
baratron From: baratron Date: 27th May 2008 01:26 (UTC) (Link)
Point taken. I was short of space because it's 4 pages already and I really didn't want to start a new page for a couple of sentences, but I've changed the wording of the beginning. It now reads:

I am writing to formally state my frustration regarding various members of the practice constantly trying to change my asthma medication. I would like this letter to be added to my medical notes so that I no longer have to repeat myself.

My asthma is good BECAUSE of the medication and dose that I'm on. 200 μg of Flixotide (fluticasone propionate) twice a day suits me very well, and is the minimum effective dose. This should be the end of the story, except it clearly isn't considering the number of times people have attempted to reduce the dose or change to a different drug over the past year.


This change also gets rid of the informality about "the amount of hassle I've had", which is how I honestly feel but isn't the best possible wording. I knew the letter would need a certain amount of rewriting to be changed from my initial angry rant into something which makes me sound like an intelligent individual who has done a lot of research into her own symptoms, but it's so difficult when you are angry!
johnckirk From: johnckirk Date: 27th May 2008 10:06 (UTC) (Link)
Firstly, I think that's a good letter, with lots of useful information. However, there may be a couple of tweaks you can make.

Could you move the paragraph about your history ("on Becotide from 13 to 19") nearer to the start? They hopefully have this information in your records already, but if you're providing a summary then it might help to put other information in the right context. Also, reading through this letter, it sounds like a steady improvement, where the doctors have done everything right; echoing someone else's comment, maybe you should say explicitly that you've tried different medication recently (on their advice/prescription) and it's made things worse. Similarly, you might want to change "constantly" to "frequently", unless they're doing it every time you visit.

Regarding informality, could you reword "evilness of my joints"?

Being picky, in your final bullet point I'd change "occasional riding" to "occasionally ride", so that it matches the other bullet points.

Anyway, good luck with it all.
kyte From: kyte Date: 27th May 2008 06:26 (UTC) (Link)
That was a very informative letter!

If it were me, though, I think what I'd do is write a short letter saying 'I am distressed at the repeated medication reviews where I am urged to reduce my medication... I believe this is the minimum effective dose...Please restrict such reviews to the minimum necessary'. Then attach two appendices - one list of identified triggers and one bullet point summary of your relevant medical history.

Oh and you might need to make it clear that school laboratories are somewhere you actually need to go!
ailbhe From: ailbhe Date: 27th May 2008 19:21 (UTC) (Link)
This (appendices) is a tactic which worked for me when I was complaining about medical care and asserting my needs.
hatter From: hatter Date: 27th May 2008 07:42 (UTC) (Link)
Looks good to me. It is long but it's not unnecessarily so, so I don't think that's a problem. As it should be on file in future, you can hopefully deflect discussion by refering them to it and explain you don't want to waste valuable consulation time discussing it, and suggest they schedule another appointment about this if they feel it necessary after reviewing it.


the hatter
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