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!

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6 thoughts on “A review of today’s appointments

  1. I commented ages ago on your post about having two different doses to switch between when you need to step up and recently I suggested this to the doc as an alternative to more Prednisolone while I’m in the yellow zone and he thought it was a brilliant idea! Turns out I haven’t been able to step back down to Seretide 50/25 which sucks so we will see what the nurse has to say next week.

    I have a similar issue with asthma and exercise as I play ice hockey which is cold, dry air and exercise rolled into one!

    I also have a similar concern about paying out. If we continue with this ‘step up the inhaler not the puffs’ thing then I will need probably about 15 Seretides a year (not accounting for any lost ones) and 3 or 4 relievers, then I’ve got my Vitamin D3 tabs, 16 lots of Pizotifen a year for cluster migraines, 5 lots of my Mometasone nasal spray for hayfever symptoms as well as antihistamines (we are still trying to find one that works), Dermol for eczema, and each year probably around 4 lots of Prednisolone and a good few rounds of antibiotics. Add in some Otomize for those evil ear infections, and an extra canister of Salamol for my ice hockey kit bag and that’s a lot of trips to the pharmacy! I worry every time I go in that they think I’m a hypochondriac, especially now that I’m trialling things to find the right fit and rotating antibiotics because I had Amoxicillin for a chest infection only a couple of weeks back so they had to give me Clarithromycin for my ear infection last week..they must think I’m on hundreds of things given that most times I am in there I’m in with a new script.. 😦 I’m not at uni age just yet so I still get free Rxs but I worry for the time when it comes because I’ll be rocking up over £1000 per year at the current prescription charge!

    I seriously don’t understand why asthma isn’t a criterion for exemption. My friend has diabetes and asthma and my mum has diabetes so fair enough on that front but because that makes her exempt from ALL prescription charges, she doesn’t even have to pay for her asthma meds which are only about £80 a year seeing as she is on low-dose Clenil and hardly ever uses her reliever. I know it sounds facetious but it feels unfair sometimes..

    1. I totally understand your worry about prescription costs…. If you’re in the UK all prescriptions costs £8.20 per item. There is no charge of you are 0-18 and in full time education, but as soon as you turn 19 you will have to start paying… I’m 19 in June and I will have to start paying… But there is a pre-payment certificate that will save money… I think it’s something like £144 for a 12 month certificate rather than £8.20 per item every time you need something…
      I am so glad that your GP thinks it’s a good idea to have two inhalers! I hope it works well for you! I’ve ended up having to stay on the higher dose and add in montelukast because the lower dosage did not control me at all… However montelukast keeps me awake at night so I am going to see if there is any other inhaler options that I could try.
      Feel free to email me or message me on my facebook page, and please do let me know how you get on with the two inhalers 🙂

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