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Another UTI?!

[Warning! This post is TMI]

Do you remember about 6 months ago when I had a UTI? No? Well have a look here. Well yesterday I got diagnosed with my second UTI in 6 months.

However this UTI is quite different to my last UTI, in that I really don’t have that much pain. My main symptoms is really frequent urination (sorry that’s quite TMI). Yesterday night I had to get up 3 times to go to the toilet and I ended up going to the toilet 18 times during the day… And I’m not exaggerating that, I actually did go 18 times. And 8 of those times were before 10AM. I texted Mum after my 8th time because I knew something wasn’t right but I was hoping it would just pass. Mum said that it was probably best to phone the doctors and get checked out because it sounds like a UTI but then again, I didn’t have much pain so maybe it was nothing, but I was definitely not going to risk anything when I only have one kidney so I rang the doctors.

I was told that a nurse practitioner would phone me back within an hour to discuss my symptoms and maybe talk about treatment. The only problem was that I had a lesson and the classroom that my lesson was in has no signal AT ALL! So I ended up having to go and speak to my teacher about doing the work elsewhere in college where there is signal, and my teacher was totally cool with the whole situation and let me go.

The nurse practitioner phoned me after about 40 minutes and said that she thought I did have some type of UTI and that she would prescribe a 3 day course of antibiotics, at which point I told her that there was absolutely no way that I was going to take Trimethoprim without anti-nausea medications because last time, I was almost sick on somebody because of the nausea that they caused, but the nurse wasn’t cool with prescribing some anti-nausea meds so I have ended up on a totally different antibiotic that I need to take 4 times a day. The nurse practitioner also wanted me to drop off a urine sample so they could see what kind of bacteria was causing my symptoms. So I ended up going down to the doctors office after college to get my prescription and to give a urine sample.

However, as usual, everything was quite chaotic at the surgery. I had to stand in a queue to get the sample pot, then stand in the queue to hand it back in again. Then I had to wait while the receptionist looked for my prescription and told me that it must have already gone over the pharmacy and to check there. So I headed over to the pharmacy to stand in the queue and get my prescription, except I was only given Flutiform (which I was due to collect anyway) and the pharmacy hadn’t heard anything about any antibiotics. So I had to headed back over to the doctors, to stand in the queue and I had to ask them to look for my prescription again, and it turned up in a box of prescriptions that are never collected. So back to the pharmacy I went, prescription in hand this time, and tried to get my prescription filled. However, it turned out that the Nitrofurantonin box had gone walkabout so I had every pharmacist (literally all of them) looking for this box which turned out to be waiting to be used to fill another prescription. But on the plus side I did, eventually, get the Nitrofurantonin! What a fuss for 12 little tablets!

Unfortunately I wasn’t given any patient leaflet about the Nitrofurantonin so I ended up looking online for the patient leaflet to see the side effects (all of which are scary) and any contraindications, since I always double check the pharmacist’s and nurse’s/doctor’s actions. And I found that Nitrofurantonin is usually prescribed for longer than I have gotten it…

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Of course, you can’t trust everything you find on the Internet, but this advice was similar in a few sources that I found… But I guess if it doesn’t go then I can have more?

The only thing that the pharmacist told me was that this antibiotic can discolour your urine, whatever that was supposed to mean… (TMI here but it turns out that Nitrofurantonin can give you neon yellow urine, which is slightly shocking).

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I didn’t have a small panic after I had taken my first dose because I started wheezing like crazy. However my neighbours had decided to burn a tree and the smoke was everywhere, including in my house, so after I had taken ventolin and managed to get my thoughts together I realised that I probably wasn’t reacting to the antibiotics because wheezing, coughing, tight chest etc were the only symptoms I was having, and if I was reacting surely I would be itchy, swelling etc. As it turned out, my asthma was freaking out because of the smoke and I didn’t really have any symptoms after taking the other doses, so it was my asthma and it wasn’t the antibiotic.

I’ve taken 3 doses now and I’m feeling significantly better already. I only needed to get up once in the night to go to the loo and I only went 3 times before 10am unlike yesterday’s 8 times. The only thing that hasn’t changed is how tired I am, but I don’t really have time to stay of college to recover so I am having to plod on, and take things as easy as possible.

One of my main concerns is that my appendix is sore again, which is what happened with my last UTI. So I am going to keep an eye on that and I’m also going to try and find out if I will get the results of the urine analysis over the phone or whether I have to go and find out what they showed…

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Psoriatic Arthritis: advancements in medicine

I recently signed up to receive news from the Arthritis Foundation and on Wednesday I got an email which was all about a new medication called Otezla (Apremilast), that has just been approved by the FDA for Psoriatic Arthritis.

I know a couple of people with Psoriatic Arthritis and so it’s nice to see that research is focusing on other types of arthritis and not only Rheumatoid Arthritis, which I find sometimes draws more attention than other types of arthritis… And I have read opinions on other blogs, of people who seem to share this thought.

Otezla is a selective phosphodiesterase 4 inhibitor, which sounds really complicated but what it actually does it block an enzyme (called phosphodiesterase 4, funnily enough) which plays quite a major role in the inflammation that Psoriatic Arthritis causes…. Meaning that this medication reduces the inflammation!

Clinical trials showed that not only was Otezla effective, but it was relatively safe too, in that it doesn’t seem to increase the risk of serious infection like so many Biologics do!

I’m not suggesting that Otezla will revolutionise the treatment of Psoriatic Arthitis, there is no evidence to suggest that BUT it does give people more options, which is really needed, not only in Psoriatic Arthritis but in all types of arthritis. I know people who are worried about running out of medication to try so maybe, just maybe this med might help. This is the second new medication that has been approved by the FDA for the treatment of Psoriatic Arthritis in the last 6 months, the other being Stelara, so it does really look like there is more and more research going into arthritis, and psoriatic arthritis in particular.

And what’s more Otezla is administered orally by taking a tablet! I found that concept quite novel as all of the biological medications I know of either have to be injected or infused… Although there are quite a few DMARDs (disease-modifying anti-rheumatic drugs) that are taken orally, methotrexate, sulfasalazine and leflunomide come to mind.

I haven’t been able to find much on when Otezla will be reaching the UK and Europe but I will do a bit more digging, and hopefully Otezla will be approved very soon here!

My second blood donation session

On Wednesday I donated blood for the second time (you can read about my first donation here) and it was a whole lot less complicated than the first time… Probably because they already had all my medical history and I had only changed one med since the last time I donated…

I think the hardest part of the whole donation is drinking the pint of water… I like water but I seriously can’t drink a whole pint in one go. It took me about 20 minutes to finish the whole glass and that set my appointment back by about 5 minutes

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One of the nurses did come along though and saved me with some orange squash! So I didn’t quite drown in water.

I also had to read a load of information about the donation, which hadn’t changed from last time, but I also got a leaflet about doing exercises while you are donating… However doing exercises for your bum while I was donating wasn’t really a priority for me.

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The actual donation itself went pretty smoothly. My donor carer and I did have a slight concern half way through my donation that I wouldn’t be able to finish because my flow rate was too slow…. As you can see in the picture the needle is slightly squint and apparently that was compromising the flow rate so after we had re-adjusted the needle my flow rate shot up!

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Because this was my second donation I received a key ring with my blood type on it, which I think is pretty nifty… Although I am yet to stick any keys on it.

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I was pretty lucky again that I didn’t get any adverse effects from donating straight away, but later, at about 10.30ish on Wednesday night I walked up the stairs at home and my blood pressure just dropped. I was literally going to pass out, my ears were ringing and everything was getting really bright white (some how the room doesn’t spin when my blood pressure drops and things get brighter rather than darker). So my first aid training kicked in and I ended up lying down on the floor at the top of the stairs till my ears had stopped ringing. My bedroom is literally less than 2 meters away from the top of the stairs so I got up and lay on my bed… The process of standing up and walking 2 meters was enough to make my blood pressure drop again so there was no way that I was going to get up again… And that meant that I missed taking my Flutiform which completely messed my breathing up all night and for most of the next day… Thankfully mum was kind enough to bring my toothbrush through for me so I didn’t have to walk far to brush my teeth.

The next day my blood pressure was totally fine again, it was almost as if nothing had happened but I was really struggling to walk upstairs… I was so short of breath and my muscles were burning. I think it was a combination of asthma, missing Flutiform and giving away a pint of blood but fortunately that only lasted a day and I’m practically as good as new today! (Unless you look at my joints that is).

My (practically none existent) relationship with my Rheumatologist

Reading other people’s bogs has shown me how little I really know about what is going on with my joints… I know that the scans have been clear except from my Nuclear Bone Scan which was inconclusive because I was apparently still growing and an X-Ray of my foot which has shown that some bones have fused but that can happen without having bad joints, so may or may not mean anything. I know that I have some sort of antibody in my blood, and I know that it is the IgM whatever that means. And that is all I know, after 7 years, that is all I know.

I have no clue what my CRP or my ESR is or has been, I’ve been tested for lupus but I am guessing that result was negative because I have no heard back… And the test was over 2 years ago.

And do you know why I am clueless… Because my doctor doesn’t know what is going on, and because my physio doesn’t know what is going on, and the reason my physio doesn’t know what is going on is because of the lack of communication between her and my doctor. In fact my rheumatologist is pretty rubbish at communicating full stop… This is my most recent letter that I got from her almost a year ago…

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That’s all I get, 2 lines! And that’s one of the longer letters… Oh and do you know why there was no inflammation? Because she scanned the ONLY part if my body that isn’t sore! When I saw her in December 2012 I was in the middle of a flare in my neck, and she decided that it was good to do an MRI on my lower back… That didn’t sound right so I rang up and checked if she really wanted it on my lower back when my neck was the problem, the receptionist checked and apparently she did want to look at my lower back. Now I might have missed something but last time I checked my neck and lower back were at DIFFERENT ENDS OF MY SPINE! But maybe she was checking for something else… Sacrolitis perhaps. Maybe she is thinking along the Seronegative Arthritis route? Maybe she is thinking along the Ankylosing Spondylitis route? But then that wouldn’t make sense if I have the IgM antibodies… Unless they just happen to be present? But it would make sense why (to the extent of my knowledge) my ESR and CRP have always been within normal range… Unless I just happen to be one of those unlucky people whose serology is always normal an it fluctuated between lower normal and normal normal?

I have so many questions that my rheumatologist IS going to answer in May!
1) Why is the communication between you, my GP, my physio and me so crap?
2) Why do I have to chase you up about everything? (Although I think that’s normal)
3) What on earth does a positive IgM mean? Is it IgM-RF (rheumatoid factor) like I’ve been lead to believe? In which case, why are you checking for sacrolitis?
4) Why has it been so long between my appointments? 17 bloody months that I have waited patiently!
5) Where is that physio you promised me 2.5 years ago?
6) How the hell am I going to get diagnosed when you never see me?!
7) Will you help me transition to adult care? I.e give them my notes, or will I have to intervene?
8) What have my CRP and ESR been every time you have taken them?
9) Why, in the last 4ish years I have seen you, have you only done 2 examinations?!
10) Will you prescribe me another NSAID that doesn’t give me headaches?
11) I have bursitis and inflammation of my ligaments in my knees, I can’t do exercise so it isn’t a mechanical injury, this points to autoimmune! Would you agree? And if so, does it point to Spondyloarthropathy?

I don’t think those questions are too unreasonable, and I know I’m not asking the obvious “what is wrong with me?!” But I really don’t think that I will be finding that out any time soon really… Unless something extraordinary happens and something shows up, I think I’m in for a long wait for a diagnosis… 7 years is long enough but I know other people who have waited a lot longer, granted they were on treatment, but I still think that I will get there in the end. And until then, I represent a lot of people who are struggling to get diagnosed, and that’s fine with me. That doesn’t mean not going to push for a diagnosis, but I have accepted that it’s going to take time…