Hey... at least it has a dose counter!

A late night update

It’s quite late here so I am only going to write a quick update… At this rate I am only going to get 5 hours of sleep.

So the other week I had my review with my asthma nurse to see whether Singulair has worked for me… It had not, and in my opinion it was a waste of money. The only effect it had was to give me wacky dreams and to keep me awake, and was generally something that I didn’t feel comfortable taking anymore. My peak flow was in the green zone and I felt well controlled, but yet exercise was still an issue. My asthma nurse decided to grab another nurse in to help with the consultation and her advice was to see the chest consultants up at the hospital. I was not too keen on this idea though. I’m not going to go into details but unless you know me well, you probably wouldn’t know that I have quite a lot of stuff going on in my personal life right now and I do not need another consultant, that I don’t feel I need, complicating that right now. I managed to convince the two nurses to let me have a trial of Seretide again. For those of you who are new to my blog, I tried Seretide as a DPI for about 2 months back in 2012/2013 and found that it actually exacerbated my asthma, so this time we have decided to try the MDI [aerosol version] of Seretide and see what happens. The problem with Seretide is that you don’t get the dosage flexibility that you do with combination inhalers containing formoterol as the LABA component [AKA Symbicort, Flutiform, etc]. I used to take Flutiform 125/5 2 puffs twice a day on a normal day and 3-4 puffs on a day that my asthma was bad or on days I was exercising. However, I was prescribed Seretide 125/25 2 puffs twice a day so there is some mismatch in dosage that I was worried would mess with the control that I already had. But my breathing has been really good since starting it (with the exception of one attack which was due to me completely ignoring my triggers on a night out… so basically I caused myself to have an attack, not something I would advise!). I am still worried about what might happen if I get a cold, which is when I would normally increase my dose of Flutiform but right now things are looking up!

I also wanted to update you all on my joints, they have actually been feeling pretty good recently. Not much pain or morning stiffness at all. I am still getting swelling in my ankle, but we are now querying whether that is due to this autoimmune condition or whether it is due to a mechanical problem… I have a MRI in May to try and work out what is causing the pain and swelling there. However, this past week I have seen a massive increase in pain, and stiffness, and fatigue. In fact my joint pain was so bad at one point that I as seriously considering going to A&E… while you are sitting on the floor in your bathroom, trying not to vomit your anti-inflammatories up from the pain, A&E seems really, really inviting. But I got through it, the meds kicked in and I was mobile again surprisingly. I honestly thought that day was going to be a day from hell, completely spent in bed but I actually managed to go out for a run that evening. I spoke to Britt [AKA The Hurt Blogger] about this as I have read about similar experiences she has had, and she has found that exercise can reduce her symptoms, of course without meds exercise wouldn’t really be a viable option but together… they help. And that is what I have found too, the meds [and heat packs, and hot showers, and ice packs] help to get me moving, and once I am moving comfortably enough to do exercise, that helps to reduce my pain and reduce any stiffness that I still have. Don’t get me wrong I am still sore, I do still struggle but exercise helps to make my struggles easier…

I have also been experiencing some newer symptoms… or maybe they aren’t that new and I am only just recognising them as symptoms now. I have been having experiencing hair loss, literally I loose a handful of hair every time I wash my hair. I am so thankful that I have thick hair, I don’t know how I would look otherwise. I am pretty sure it’s not the meds because I don’t really take anything that can cause hair loss, and I have been on all of my meds [except from Seretide] for long enough now to discount that as a symptom. A friend of mine [who deals with autoimmune arthritis, among other autoimmune conditions] has suggested that it could be the inflammation from my condition causing the hair loss, which is a distinct possibility. I have also been getting nose ulcers… for those who don’t know what these are they are essentially the same as mouth ulcers but in your nose, and mine are incredibly painful! I asked a pharmacist about them and she suggested trying vaseline on them to try and soothe them a bit, and it helps to a certain extent. Since the end of February I have had about 5 or 6 and they are definitely not pleasant. These are two symptoms that suggest that my condition is not as controlled as I had thought and will definitely be brought up to my rheumatologist when I see her next… These may also help with narrowing down my actual diagnosis rather than just being labelled with an autoimmune disease.

Photo on 27-03-2015 at 17.27

Asthma and exercise: My current experience

I haven’t really blogged that much about my asthma for a while, mainly because I have been focusing on my joint health a lot. My asthma has been pretty well controlled these past few months, and I have only really experienced symptoms if I am exposed to a trigger. My Ventolin usage has been right down which is excellent, my peak flow has been okay for the most part, and I haven’t really needed to increase the dosage of my Flutiform that much either.

My main issue has been when I exercise. My friend and I have just finished our second week of running using the “Couch to 5K” app which gradually increases the distance, and length of time that you run for over a period of 9 weeks until you can run for 30 minutes [and hopefully run a distance of about 5k] at the end of it. I have never been a fan of running, although a lot of the sports I used to do involved running [football, cricket, netball, ultimate frisbee, rounders, etc]… I just hate how running makes me feel while I am actually doing it, I hate how tight my chest gets, and I hate how it makes me cough, I hate the excessive mucus production I get after every run [that may be a bit TMI]… But having said that, I really like how running makes me feel after I have finished a session [apart from the chest issues part]. The release of endorphins is fab. My main concern is now that the app is slowly increasing the length of time I have to run for… Running intervals of 90 seconds makes me feel like my chest is going to kill me, so how is running intervals of 2 minutes and 3 minutes going to make me feel next week, or running for 5 minutes the week after.

I admit that I am not that fit right now, but being unfit does not make you wheeze, it does not make you cough till your head hurts, it does not make you feel like you have an elephant sitting on your chest. Being unfit makes you more out of breath, more hot, more sweaty… that is the difference between being unfit and having asthma that is triggered by exercise. I explained all this to my asthma nurse on Monday and she decided that we could try Singulair to see if it helps. I have just done my 2nd run since starting it and so far no difference, although I haven’t been taking for Singulair long enough to make a difference so hopefully I will see a difference over the coming weeks. I have also increased my Flutiform to 3 puffs twice a day on days I am exercising and I have also started pre-medicating with 400mcg [4 puffs] of Ventolin before I exercise… Both of these are helping somewhat but I am still really struggling… I have also started taking my peak flow before and after exercise, and even with the added Ventolin and Flutiform my peak flow still decreases by up to 100 points [in my case this is equivalent to 25-26%, although this drop can range from 13% all the way up to 26%, most likely depending on how I was feeling that day, as well as environmental factors]. If the singular doesn’t decrease this drop, or if I am still feeling pretty rubbish during exercise my asthma nurse and me are going to have to put our heads together to work out what is best in terms of treatment.

However, despite my asthma I do feel as if I am getting stronger, I have lost 5kg [11lb] since January, and I have only been exercising properly for the last 2 weeks… Right now I try to swim twice a week, and I run 3 times a week too although because of my asthma, I can’t work out as hard as I would want to, but with the right treatment I’m sure that will change. It is just very frustrating because my joints are at a place where I can exercise and build back the muscle I have lost and I am really motivated to get fit but my lungs are putting the breaks on it a bit… I am so incredibly lucky to have an asthma nurse who understands what it is like to have asthma, and have it preventing you from exercising to your best ability [she has asthma herself, and likes to cycle], and she isn’t one to tell me to stop exercising like my last asthma nurse asked me to do… Actually my last asthma nurse asked me to quit my job [as a swimming teacher and coach] and to stop swimming, but this asthma nurse is happy for me to continue exercising as long as I know when my lungs have had enough, and she is fully on board with trying new treatments so that I can work out as much as I can, within reason of course.

A review of today’s appointments

I have a lot to update you guys on! Today has been hectic!

It started off with a rheumatology appointment at 9.30. I was super nervous about this appointment because I didn’t feel that my joints were as controlled as I would have liked even though my morning stiffness had improved and I am able to exercise now [I am training for a 5K 3 times a week, and I swim twice a week] as my joints still hurt and swell, I still have bilateral achilles tendonitis, both my MCL and LCL in my knees are still playing up and I am absolutely knackered. I was worried that my Rheumy would suggest an immunosuppressant [AKA methotrexate or azathioprine] and I was worried about the implications of this on my course and placement as I will be on an infectious disease ward on placement… but thankfully things have turned out for the better and right now I do not need to go on any sort of immunosuppressive therapies [although I was warned that this could change]. I don’t even need to change medications! I had struggled with fluid in my left knee throughout February but thankfully taking Naproxen twice a day [rather than as needed] every day has sorted that and I am happy to report that my rheumatologist found no inflammation or fluid in any of my joints!!! *Cue the happy dance* I also found out that I don’t have any inflammatory markers or auto-antibodies in my blood! First time in 5 years I haven’t had antibodies in my blood guys! This is big!!!

However, we did find that I have lost a significant amount of movement in my right ankle and I have experiences catching/locking in that ankle so the plan for now is to stay on Naproxen and Plaquenil/Hydroxychloroquine at the same dose [400mg a day] for another 4 months, get an MRI on my ankle to see if it is a mechanical or inflammatory issue, continue with my achilles tendonitis exercises, get bloods done and follow up in 4 months.

The nurse I had today was absolutely brilliant, I only had 5 tubes of blood taken today and the nurse remembered me as the girl who usually gets 8 taken… I feel that I must have a bit of a reputation. We had some great banter together, and swapped some funny patient stories about what we experienced on placement, or in her case, in work. I feel that people like her really make your day. My rheumatology clinic can be really depressing, no one wants to be there and you can feel the dread hanging in the air as you sit there surrounded by [mainly] elderly people, or worried parents of younger children/teenagers, but as soon as this nurse walks into the room it really lifts the atmosphere and lets everyone have a little chuckle… Things like that are important.

Me and mum then had to rush up to my university accommodation [about 50 miles from the hospital] so that she could get back down to go to work… and the road was full of lorry’s so that delayed our progress because a lot of them thought they were powerful enough to overtake each other, when they really weren’t. But I got up here in plenty of time to make my asthma annual review.

This was my 3rd asthma annual review… that’s crazy right? I got diagnosed nearly 3 years ago, it really doesn’t seem that long. This is my first asthma review since I moved to university and it was my first asthma review with my new asthma nurse, in fact it was the first time I have met my new asthma nurse so I was quite nervous. But I shouldn’t have been, the appointment went very well. I explained that I felt that I am well controlled [with the exception of a little episode the other week, as a result of having a drink with ice in it] but my big problem is exercise. I find that exercise sets my asthma off quite a lot and I feel that it is preventing me from getting to my full potential during exercise. So we discussed my treatment options, I am already on a combination inhaler so I am to increase that on days that I exercise [although she didn’t tell me how much to increase it by… I’ll probably take an extra puff on the morning and night], I can also pre-medicate with more Ventolin than I do already… She also phoned the GP in my practice who specialises in asthma who advised that I should have a trial of Singulair [AKA Montelukast], so I have to pick up my prescription tomorrow and try it for a month. And then I have to see my asthma nurse in April to see how I am getting on. My asthma nurse prescribed the brand of Singulair rather than the generic, Montelukast, which turns out has to be ordered in [I checked at 3 pharmacies] because it is 14 times more expensive than the generic… If this works I hope she will start prescribing the generic because it is crazy expensive! We aren’t sure if Singulair will help me because I do not have allergic asthma but we decided that if we don’t try it then we will never know, and if it does help, then it was an easy fix.

Every asthma review I’ve had has resulted in a load of follow-up appointments and changes to treatment plans so I am hoping that this won’t end up getting too complicated. I just want to be able to exercise when I want without worrying about having to plan it out with increases in meds on certain days and not on others… Is that too much to ask? Apparently it is… although if it works then I will take it. I have a feeling that we may end up increasing my Flutiform to the 250/10 inhaler in the future if this doesn’t work because I am exercising about 5 days a week now so I will have an increased inhaler dosage for 5 out of 7 days every week… It might just be easier, and cheaper, to have an inhaler with a higher dosage, but we shall cross that bridge when, and if, we come to it.

Right now I am super aware of how many prescriptions I have, I am currently up to 5 [or 6 if you include paracetamol] because it isn’t only going to cost me a lot as soon as I turn 19 [even with a pre-payment certificate] but it is costing the NHS a huge amount too… It’s a shame there isn’t an easy fix out there right now. Of course, I can exercise inside when it is cold but that only helps so much, I still get symptoms… and it probably won’t be any easier in the summer since humidity sets me off too. It’s annoying that the point I get to a point where my joints will allow me to exercise, my asthma kicks up a fuss!

Medication 101: Clenil Modulite

Ah good ol’ Clenil Modulite… Like I said earlier, I’m going to be banging out a few Medications 101 since I am a bit behind with them. Clenil was the first preventer inhaler I took back in July 2012 before I moved onto combination inhalers. In the UK Clenil is a very common first preventer inhaler. Clonal modulite contains Beclometasone Dipropionate, a corticosteroid, which is used to reduce inflammation in the lungs and is used to prevent and reduce asthma symptoms. However, Clenil is a slow acting medication and so should not be used in attacks or to reduce acute symptoms.

Doses:

Clenil Modulate comes in 4 separate doses: 50, 100, 200 and 250mcg of Beclometasone Dipropionate per accusation. The usual starting dose for Clenil is 400mcg twice a day [in adults], but can be increased up to 1,600-2,000mcg if needed. Your dose will be decided by your doctor.

I started off taking the typical dose of 400mcg a day via 2 puffs of Clenil Modulite 100 twice a day. Unfortunately, this alone did not control my asthma sufficiently to be used alone and that is why I moved onto a combination inhaler.

Precautions:

Clenil modulite is not indicated for use in an acute attack, or for people who are allergic to beclometasone dipropionate.

Care should be taken when taking Clenil modulite if any of the following applies to you [and tell your doctor if any of these do apply to you]:

  • if you are, or have ever been treated for Tuberculosis
  • if your Asthma is getting worse despite Clenil Modulite [needing your reliever inhaler more often, still experiencing asthma symptoms etc]

Side effects:

  • Allergic reactions – rashes, hives, itching, swelling of face, lips, eyes, throat or tongue
  • Oral thrush – more likely if you take more than 400mcg a day
  • Hoarse or sore throat
  • Changes in normal production of cortisol in body [cortisol suppression] – unusual, and only usually occurs after high doses of clenil for long periods of time
  • Stunted growth – again this is unusual and is associated with high doses of clenil for prolonged periods of time
  • Decrease in bone density, glaucoma, cataracts – again is associated with high doses of clenil for prolonged periods of time
  • Sleeping problems, depression or feeling worried, restless, nervousness, irritability or excitability
  • Headaches
  • Nausea

I was lucky and experienced no side effects from Clenil, although there are precautions you can take to reduce the symptoms of thrush and hoarseness such as taking Clenil through a spacer, and brushing your teeth/rinsing your mouth after taking Clenil.

Pros and Cons

+ Side effects are usually quite mild

+ Can be taken via spacer

+ Some flexibility in dose

+ There are plenty other preventer inhalers to try if this isn’t right for you

Only available in aerosol form [in this brand]

Not available in the US or Canada

Sources:

Patient information leaflet

Medication 101: Ventolin

It’s be a while since I have done a Medication 101 so I am going to try and pop a few out now.

I’ve been taking Ventolin for nearly 3 years now, since June 2012. I’ve taken Ventolin through 2 different devices, the Ventolin Evohaler which is the typical aerosol inhaler that most people are familiar with, and then I also used the Ventolin Accuhaler for a short period from January 2013 to October 2013.

Ventolin is a brand name for Salbutamol [AKA Albuterol in the US] which is a Short Acting Beta 2 antagonist (SABA) or in layman terms a fast acting reliever inhaler. It is used to to relieve spasms in the smooth muscle around the airways which produces asthma symptoms/bronchospasm [cough, wheeze, tight chest, shortness of breath]. Most people with asthma are treated with a reliever inhaler and a preventer inhaler, and it is very important to be aware of which inhaler is your reliever. The reliever inhaler is the inhaler that is going to help you out when you are experiencing symptoms or having an attack. [Note; some people use a SMART or MART regimes, please always use your inhalers as directed by your doctor. This is simply to provide general information about Ventolin].

Doses:

The dose of Ventolin is variable. The Ventolin Evohaler contains 100mcg of Salbutamol per accusation and the Ventolin Accuhaler contains 200mcg of Salbutamol per accusation. Most people take 100-200mcg of Ventolin to relieve symptoms but may take up to 1000mcg when needed. Please phone an ambulance ASAP if your symptoms are not easing even after taking your inhaler, or if you don’t have your inhaler with you. Asthma can be very serious, don’t mess around with it.

Precautions:

Consult your doctor before you take Ventolin if you are hypersensitive to Salbutamol Sulphate or HFA 134a which is the aerosol in the Ventolin Evohaler.

Special care is also advised to be taken when taking the Ventolin Evohaler if you have high blood pressure, have an overactive thyroid or have a history of heart problem including angina or an irregular heart rhythm. Please consult a doctor or pharmacist if you call under any of those categories.

Side effects:

I have starred [*] all the side effects I have experienced when taking Ventolin.

  • Allergic reactions [affecting less than 1 in 10,000 people] – Please seek medical attention ASAP if you experience swelling of the face, lips tongue or throat, if you have difficulty with breathing, if you have difficulty swallowing, if you develop an itchy rash, if you feel faint, feel light headed or collapse.
  • Common side effects [affecting less than 1 in 10 people] – Headache*, feeling shaky*, heart palpitations* [please consult doctor about this].
  • Uncommon side effects [affecting less than 1 in 100 people] – mouth and throat irritation, muscle cramps*
  • Rare side effects [affecting less than 1 in 1,000 people] – low blood potassium levels, peripheral dilation [increased blood flow to extremities]
  • Very rare side effects [affecting less than 1 in 10,000 people] – changes in sleep patterns, changes in behaviour [e.g. restlessness, excitability

I have found that Ventolin/Salbutamol has got me out of some sticky situations but if you find that you aren’t responding to your reliever inhaler any more or you are still having issues with your asthma after taking you inhaler, go to the hospital. Don’t hang around because you aren’t sure if your symptoms are bad enough to seek medical advice. Asthma can be life threatening so be pro-active!

Source:
Patient information leaflet.

A realisation moment

I think today was a realisation moment for my mum today. We had gone for a coffee break when we were shopping because my knee and ankle were giving me some trouble. We both ordered a cup of tea, which arrived as 2 pots of tea. When we had finished I had only drank half a cup of tea, and why questioned why by Mum I explained it was because my wrist hurt. Struggling to put why my worst hurt together with why I couldn’t drink the tea, I explained that when my wrist is sore it can be difficult to lift things like pots of tea because the weight of it aggravates my wrist.

This just shows that being diagnosed with an autoimmune condition isn’t just a learning curve for me, it’s a learning curve for the people who care about me too. I think I tend overlook that quite a lot as I am too busy dealing with it, I sometimes don’t recognise how all of this can affect my family and friends. I still believe that education and sharing experiences is the way to deal with a lot of these problems and so I don’t hesitate to educate people about how my condition affects me and generally how autoimmune arthrits conditions can affect people generally. This affects everyone differently so don’t forget that one family member might have different struggles to another family member, even if they have the same condition.

Secondary school and chronic illness

When I was at secondary school (ages 11-16) I was incredibly lucky when it came to my joints. I was very close to my PE teachers, and while I didn’t always tell them that I was having a rough time they usually knew and would ask if I needed to sit out. In fact I actually only asked to sit out once because of my joints, every other time they asked me. And more often than not I refused because I loved sports so much I would have rather suffered than sat out. I also used to feel that because I didn’t have a diagnosis that I couldn’t sit out even though it was never really like that at all.

I remember taking a lot of trips to the nurses office in the early days when my fingers hurt too much to write. We didn’t know what I had or why they were sore so she would tape them up to try and give them support while I was writing, and then I would spend the rest of the day trying to hide them from my classmates and teachers so I wouldn’t have to answer questions about it.

When I was in year 9 or 10 I took up the Saxophone which I loved. I couldn’t read music but I could play by ear when my teacher played the piece to me. However, as usual, bad joints decided to interfere and there were some days I couldn’t play because my fingers and wrists were too sore. We changed my lessons to the afternoon/late morning so it would be easier on my joints. I was also a member of the orchestra and some practices I couldn’t play, so I would sit at the back and listen. I usually just told the teacher I wasn’t feeling well but one day I decided to explain what was going on with my joints. It turned out my music teacher had Juvenile Arthritis and totally understood what was going on, and how my joints felt. 

As you can see my secondary school experience was one of support when it came to my joints. There are so many people out there who have to fight their school tooth and nail just to get some small accomodations. I’ve heard of children being made to stand up for hours because the lesson demanded that they should be standing. I’ve heard of parents having to come to school every 3 hours to give their kids eye drops because their disease is attackig their eyes and the school doesn’t want to do the eye drops. I’ve heard of kids being forced to take part in physical education because the school doesn’t understand that kids get arthritis… Probably the most severe issues I’ve heard about is parents sending their sick kids into schools, exposing immunosuppressed kids to the sicknesses that can make them incredibly ill. 

And then of course is the issue of being absent from school. My school was okay with me missing lessons for appointments, especially because I was hardly ever off sick. However for many kids that wasn’t the reality and the school couldn’t understand that sometimes kids with JA/autoimmune joint conditions couldn’t get I to school on time, or at all. And that these kids have a serious medical condition that requires the attention of medical professions, many of whom only have appointments during school time.