What I take and what it all does!

Part of having Brittle Asthma means quite a strict daily medication regime but also the constant quest for the magic inhaler, pill or nebuliser which might just be life changing or not even life changing but give you that bit more freedom and better quality of life.

A common theme between brittle asthmatics when first meeting someone is to ask about what medications they take. Not to be nosy but for that inhaler they take that you might not have tried or something different which might help!!! I have a page where it has my medication but I thought I would do a post about the regime I follow and why I do this and what the point of each medication is.

During a normal day I have four medication sessions so to speak: breakfast, noon, dinner and before bed! As I take several medications more than once a day I am going to explain each medication after my regime.

Breakfast: Salbutamol and Atrovent Nebuliser and a saline nebuliser if needed. Seretide and Flixotide inhaler, Nasonex nasal spray, Prednisilone, Theophylline, Fexofenadine, Citirizine, Calci Chew D3, Lanzoprazole, Cyclizine, Nefopam, Co-Codamol, Laxido,

Noon: Salbutamol and Atrovent Nebuliser (if needed. I don’t always feel the need to take this set of nebulisers), cyclizine, nefopam and co-codamol.

Dinner: Salbutamol and Atrovent Nebuliser, Cyclizine, Co-Codamol, Lanzoprazole and Calci Chew D3

Before Bed: Salbutamol and Atrovent Nebuliser along with saline if needed, Seretide and Flixotide Inhaler, Nasonex nasal spray, Theophylline, Chlorophenamine, Co-Codamol, Nefopam, Amitriptyline and Montelukast

When my asthma is a bit better I substitute the atrovent nebulisers with a once a day inhaler tiotropium and my salbutamol nebulisers with salbutamol inhaler however I rarely don’t take salbutamol nebulisers except during the day when at work.

The nebulisers I take:

image1

I take Ventolin aka salbutamol in either 2.5mg or 5mg doses. Salbutamol is a short acting bronchodilator which helps to relax the smooth muscles in the airways which have constricted causing wheezing and the feeling of breathlessness. I also take Atrovent aka ipatropium in a 500mcg dose if I am not taking my tiotropium inhaler aka Spiriva. Both Atrovent and Spiriva are drugs commonly used in COPD but are becoming more common in the treatment of difficult asthma. It is an anticholinergeric drugs which blocks the muscarinic acetylcholine receptors in the smooth muscles and stops the bronchi from contracting due to inflammation.

I have two nebuliser devices depending on where I am. I have a mains powered nebuliser called a Pari Turbo Boy which is fantastic but not possible to use when out and about so I use a Beurer IH50 portable nebuliser which runs of batteries and much handier than needing to find a plug for the Pari!

image3

As well as the nebulisers I also take 2 different inhalers regularly and then a ventolin inhaler as and when I need it. The main 2 inhalers are known as preventers. The first is Seretide 500 2 puffs twice a day increased to 2 puffs 4 times a day when unwell, which is a combination inhaler made up of fluticasone and salmeterol. The fluticasone is an inhaled cortico steroid which dampens down the inflammation in the lining of the airways in the lungs. The inhaler works locally on the lungs and very little of the steroid component is actually absorbed in the circulating system. The salmeterol is a long acting bronchodilator which has a 12 hour working duration compared with the 4-6 hours of the salbutamol inhaler. I also take Flixotide 500 2 puffs twice a day can be increased to four times a day, aka fluticasone which is part of the Seretide inhaler. Due to the doses of inhaled steroid I need I was taking a higher dose of Seretide however was suffering with a lot of cramp due to the higher dose of the salmeterol so I have a second inhaler with only flixotide.

image2

Twice a day I use a nasal spray due to allergic rhinitis associated with my asthma. The nasal spray is Nasonex aka Mometasone which much like the inhaler is a steroid based medication which acts locally on the inflammation in my nose and sinuses.

Along with my nebulisers, inhalers and nasal sprays I also take numerous tablets.

The most important one is Prednisilone. This is a steroid tablet which again dampens down the inflammation in my lungs. The dose I take varies depending on how well my asthma is controlled. If I have an acute episode I will be given 40mg and then reduce as I see fit normally by 5mg every week down to my maintenance dose of 14mg. This drug is one I love to hate. It is really good for when my asthma is really bad but it does with some awful side effects which I need other medications to control. These are and anti emetic Cyclizine 25mg three times a day, a proton pump inhibitor which protects my stomach from too much acid called Lanzoprazole which I take 30mg twice a day, I also take Calci Chew D3 Forte twice a day which helps t protect my bones as one of the side effects from prednisilone is bone thinning. The D3 Forte part increases the vitamin D level in my blood which many asthmatics can lack. Prednisilone also gives me very bad restless legs which I take Amitriptyline 20mg at night as my restless legs are worse at night.

Other tablets specifically for my asthma are Theophylline (Uniphyllin) which is a slightly old style drug which requires close monitoring as you need to adjust the dose to get a therapuetic dose. Too much can make you toxic and very unwell and subtherapuetic will result in less asthma control. I take 300mg twice a day as it is a modified release tablet and taken every 12hours to maintain your blood serum level. It is difficult to explain how it works. It also has some adverse side effects which I take the above tablets for. Another one is Montelukast (Singulair) which is leukotriene receptor antagonist. It works by blocking a substance called leukotriene, which helps to decrease certain asthma and allergy symptoms.

A big part of my asthma is allergies associated with it and hay fever. I take three different anti histamines. Fexofenadine (Telfast) 180mg once a day in the morning, Citirizine 10mg once a day and at night I take Chlorophenamine 4mg. I take this at night as it has a bit of a sedating effect which is not good during the day.

I also take painkillers everyday at the lowest dose possible although this has to get increased when I am struggling with my chest. I get a lot of pain in my lower left lung where I have had repeated infections and have a lot of muscular pain as well as previous cracked ribs. For this pain I take Nefopam 30mg three times a day. This can be increased up to 90mg three times a day but I don’t want to take a high dose. I also take CoCodamol. During the day I take Co-Codamol 8/500 x2 three ties a day as it can make me feel a bit dopey but at night I take 30/500 x2 at night. I need to take Macragol (Laxido) sachet either once or twice a day as co-codamol can cause you to become constipated.

Its quite a lot of medication. I m really lucky that i have a fantastic pharmacist who has set up a dosette box for me so I don’t need to have boxes and boxes of pills. I just collect a tray once a week from my chemist and it has all my pills in it ready for me!

meds

Every three months I have a Depo Provera Injections which maintains my hormones at a constant level as we worked out my periods made my asthma worse so by keeping hormones at a constant level this helped.

I regularly require antibiotics such as Amoxicillin or Doxycycline for chest infections and if presenting with an acute attack am given IV Magnesium, IV Hydrocortisone and IV Aminophylline or Salbutamol.

Just now I am at the end of my tether with my health and have asked my consultant in a desperate plea to see if I could try Methotrexate as a steroid sparing agent. I don’t care about the side effects I just want some life back. This medication is known as a steroid sparing drug which can help people come off prednisilone. I need to wait and see if she thinks this is a good idea or not. I need to do something as I can’t stay as I am.

When the drugs all get to much and mistakes happen.

This is what I started to struggle with. I found I was making errors taking my tablets. I would take extra of some and not enough of others or vice versa. This caused me to get very ill when I became toxic as I was out with the therapeutic level for one of my drugs.

Living with a chronic condition which is so unpredictable is so difficult. You never know whats going to happen when. You need to think about everything you do and the consequences of it. You day is often dictated for you and you need to fit your life in somewhere.

With chronic illness medication plays a massive part. As the condition develops you just end up on more and more medication. Often to counter act the side effects of medication rather then the condition itself.

Working as a nurse I deal with medication a lot. I know a fair bit about different drugs and what they do. I can sort out tablets and everything for my patients not a problem.

But when it comes to myself I have recently been finding it so hard. Wether it is because I don’t feel well and trying to concentrate while I make sure I have taken the correct thing at the correct time and not forgotten I have taken it and not take it at all or forget and take extra. I would spend a saturday mornings sitting trying to sort through my box of pills, inhalers, liquids and nebs and sort them into a box for 2 weeks. It is not a hard job to do but I just broken down. I couldn’t cope with my medications any more I didnt want to take them, I got confused with when I was taking what. I knew I couldn’t afford to not take medication and could afford to make errors.

Feeling almost ashamed I called my GP and spoke to her about my problem. She was super and arranged a dossette box for my pills which the pharmacist will make up each week for me. My pharmacist who I know well phoned to chat to me about it but was really busy and wanted to see if I could wait till february before he did it but he would give me a weeks medication in boxes instead. I almost broke down. I was on the edge of tears. I think because it was all becoming real that I have really been struggling to cope with how much I am having to take. I said it was fine and I would just go back to getting my scripts 2 monthly but that would mean phoning my GP up and getting another script sent out.

For me I think I had rationalised out in my head that by having my prescription done weekly and someone else was putting my pills in separate bits for me then I would not be as aware of how much medication I am actually taking. I can swallow about 15-18 pills at once with  no bother so in my head having them in all in a box with no input from myself then I just have to pop one pack and chuck them down compared with before having to pop what felt like hundreds of pills out their packets each morning (twice in the morning so I could put y lunch ones in a box for work) and night. By the pharmacist giving me a weeks supply in boxes I felt I was still bogged down by loads of medication and almost just need a break from it. A break which I can’t have as can’t go without taking it!

Having the box has made a big difference. I was getting so confused by what I was taking and how much I was taking and when. Even when I had a list I would get lost and forget what I have or have not taken. This was not so bad when I was feeling well but on days when I have had little sleep or am feeling pretty bad it was such a mammoth task. meds

This picture I posted to instagram shows what i used to have in the top two photos. I would need to use 2 7 day pill organisers to fit everything in for a week and had a huge box of all my meds. It would come in shopping bags. Thank goodness I don’t have to pay for those bags!!! But now the bottom 2 photos I get my inhalers in one bag and nebs in another and my pills in the dosette.

It has only been a week but so far I have already noticed a difference even if it is just to make life easier and psychological so I don’t think I am taking so much I don’t care. I helps.  It also means I don’t feel like I am living in a pharmacy. Other than nebs and inhalers lying around to reach when needed I don’t need to see piles of pill boxes anymore.

I am really thankful to my GP and pharmacist for sorting this out for me.