Archive for January, 2012

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Things on the gastric side were looking up. I got the results back from yesterday’s Endoscopy and they showed that I had Gastritis – significant inflammation of the Oesophageal tract (which also explains the widespread chest pain), Stomach lining and Duodenum; not nice, but better than the ulceration that I had been concerned about.  Fortunately, all the IV medications I had been taking since being admitted were helping already – a combination of  Anti-Emmetics, (which close the top of the stomach and encourage things to flow in the right direction, as well as helping with nausea), Proton Pump Inhibitors, Antacids and H2 Blockers.

I still had some pain, but was told that it would take time for this to settle down as the inflammation eased. A nutritionist advised me to alter my diet and cut out certain irritant foods for a while; mainly spice and acidic foods such as tomatoes, peppers, onions, cheese, fruits and juices – all of my favourite things basically. Instead I was to eat lots of potatoes, white meat and fish, pasta, rice and vegetables, also things I already eat a lot of so no problem there. Hopefully, these limitations won’t be forever though as I’m a big foodie and like variety! Their guidelines said a strict diet for 4 – 6 weeks, after which I can start trying myself out with things a little bit at a time to see how I go… well except for spicy food, that’s going to take a lot longer and I love my spicy food 😦

They also stopped my Naproxen and Cyclosporin as they felt that these two drugs in particular had contributed to the Gastritis. I should mention that they did liase with my Rheumatology team throughout my stay and that they felt it was more likely to be the Methotrexate that I stopped recently. But, I was under the care of Southport Hospital and respected their wishes for the time being.

Things didn’t stop here though and another problem soon arose. As time progressed, I started to notice that the dreaded temperatures and sweats were increasing, plus I was starting to develop a very visible Still’s rash all over my body. I tried to show it to the nurses and doctor, to explain the significance of it and what usually followed, but I had been admitted with gastric problems and they were their only concern. It turns out that the two were connected though and that I potentially hadn’t been absorbing my oral medication for a month or so, leading to the major flare that follows.

As today went on, I became less mobile and able. I felt the pain and stiffness sneak into my joints; first making it difficult to reach for and hold things; next I began to struggle to sit and stand without help and then even hobbling the short distance to the toilet became a huge effort. By evening I was in a pretty bad way. A nurse finally listened to me and gave me the IV morphine I’d been prescribed to cover all of my pain whilst off oral meds; I wasn’t expecting any visitors and so fell asleep for a few hours – big mistake!

I woke up from my nap with all joints a-throbbing and found it impossible to even lift my head up, never mind sit up fully. This happens to me quite often, especially if I lie flat on my back for a time – I don’t know if it is simply part of the Still’s Disease or some throwback from the Dermatomyositis (a form of muscular dystrophy) I was diagnosed with at 14, but it has always been a big issue for me.  I buzzed the nurses to explain and was told that myself and another lady were being moved to another ward shortly and that they would sort me out there. Ironically, we were going to the ‘upwardly mobile’ ward, just at a time when I felt anything but mobile.

The problem about switching wards is that you have to make the staff aware of your problems all over again. It was obvious that they weren’t expecting a patient that had to be transported on a bed and pat-slided (a word I came to dread over the next week); this was a ward you were sent to  recover and prepare to be discharged. The two female nurses were lovely to me as I explained my difficulties and promised to find me pain relief and assistance; however, it turned out that they weren’t fully responsible for my care. It would be a male nurse called Conrad that would make all the decisions.

The first decision he made was to keep me rolled onto my left side, with pillows propped along my back so that I couldn’t roll flat. This was because he’d read in my notes that I was feeling nauseous and didn’t want me to choke if I was sick while lying on my back. Yes, I can see the line of thinking here, but I was no longer vomiting or even feeling sickly. The next decision he made was that I looked ‘too young’ to need any form of pain relief stronger than Paracetamol; I heard him say so at the nurses’ desk, which was a stone’s throw from my bed. When I told him I’d been on longterm pain medication for 16 years and that I knew Paracetamol wouldn’t help, he told me that it was ‘stronger than everyone thought’ and to ‘trust me, it’ll do the trick’.

It didn’t.

An hour or so later, I was in tears with the pain but he would not budge on the matter, even though I had actually been prescribed IV morphine and Oramorph by a doctor. I remember thinking it strange that my main pain seemed to be coming from my ‘good’ hip, but then I had been lying on it for over twelve hours by this point. I had no idea then just how bad things would get.

The night went on and the pain grew worse, but I must have managed to fall asleep at some point because I woke at the start of a nightmare the next morning.


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Things were more settled today; the IV meds and being nil my mouth had stopped the vomiting and the morphine was helping with the pain. I got the go ahead to have an Endoscopy / Gastroscopy procedure later on this afternoon. This is where they put a fibre-optic camera down your throat to look at your Oesophageal tract, Stomach and the Duodenum, which is the upper part of your intestine.

I’d had this procedure done at the age of 19, during an episode of vomiting fresh blood; however, that time I was given gas and was out for the count. This time I was just offered a sedative, which they said would leave me pretty much unaware of what was happening (during and afterwards), and make the procedure easier for them, so I took them up on it and signed my consent forms.

I went down to the Endoscopy department at around 2pm. The staff were lovely and very good at making me feel comfortable and at ease; they explained the whole procedure to me beforehand, as I wouldn’t get chance to ask questions halfway through, obviously! I was a little bit nervous about what to expect, but I have learnt over the years that panicking helps nobody – if you panic, your heart rate increases and you feel more agitated and out of control, your body tenses up and that makes it much more difficult for the medics to get things done quickly and efficiently. I always try and focus on the now, not the ‘what-ifs’, remember to breathe evenly and relax my body as if going to sleep (maybe this is why I am so good at sleeping anywhere!).

They explained to me that they would first numb the back of my throat with an anaesthetic spray that would help prevent me gagging – that part was quick and easy. Next, I was rolled on to my left side and I mentioned my joint problems so that they wouldn’t try and move me too awkwardly if I was out for the count at some point. They then gave me a very attractive gum shield and mouthpiece to protect my teeth from the camera itself; doing so before you are sedated means you get chance to become comfortable breathing with it in place, because it does feel different.

Next came the sedation – a quick squirt into the cannula already fitted in my arm. The first lot seemed to have no effect and so they gave me a second dose a few minutes later. This didn’t seem to work either, but they assured me it would probably just take time to kick in and I would feel the benefits throughout. Unfortunately (?) I seem to be immune to sedation –  in fact, all it did is make me feel more awake – but I’d like to point out that this made little difference to the procedure itself, in my opinion. It really wasn’t that bad because I was relaxed and remembering to breathe, but I understand why people may find it uncomfortable if they are anxious.

The worst bit is when the camera and tubing initially goes down the throat but even that wasn’t terrible – they blow air down at the same time so you make a bit of a gurgling sound (which I had to try not to laugh at) and you find it a little bit different to breathe and I guess that’s the time you’re most likely to panic, but before you know it it’s done.  Once it was down, I was quite comfortable and was able to breathe as normal and look at the screen to see my insides! The camera went all the way down into my duodenum and even took biopsies along the way, but I didn’t feel any of it.

It took about twenty minutes in all and I was aware of what was going on the whole time; the doctor explaining things as he went along. Even I could see the inflammation and a little pouch called a Hiatus Hernia  at some point along the way, although he assured me that particular problem wasn’t what was currently affecting me. Once they’d got what they needed, there was a bit more gurgling and discomfort as they pulled the camera back out and that was it – all done! It was a very simple procedure and I wouldn’t have any reservations if I needed one again, even without sedation.  They had warned me I may feel some discomfort afterwards, but the most I felt was a bit of a raw throat, which quickly disappeared.

Once the Endoscopy was over, I was allowed fluids again and (yipee!) was able to keep them all down. I wasn’t allowed food until the indepth results came back the next day though. Until then, we just kept up with the regime of IV medication with the addition of something to treat the inflammation, which they were now calling Gastritis. So we had a tentative diagnosis and a plan of action by the end of the day; can’t grumble about that!


Edit: I have since had another Endoscopy, this time without any sedation. It was bearable but a little more uncomfortable, which has made me realise that I probably did get some effects from the sedation,  just not what I was expecting. I was still aware of what was going on; the main difference is that with sedation I don’t recall feeling the camera doing its stuff in my stomach, whereas when I had the procedure without, I could feel what was happening. This was only mildly uncomfortable, but if you are at all anxious may be more than you want to feel.

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Note: this marks the start of my backdated posts, covering the period that I was hospitalised.

I’d last been posting about the gastric issues I was experiencing. Things went rapidly downhill on the Saturday and I was having constant, excruciating pain in my stomach and chest, alongside vomiting after only sips of water; I also experienced some rectal bleeding and started to grow more and more concerned. This continued all through the night, until we could get hold of the out of hours doctor, who told me to get to our local hospital straight away.

The doctor there examined my stomach, which was extremely tender to touch, and admitted me to the Emergency Assessment Unit straight away. The main concern was obviously the possibility of a bleeding ulcer (I suffered something similar ten years ago), but I was also seriously dehydrated and had been unable to keep any of my medication down for over 48 hours. I was examined again a short while later and had the necessary blood tests, xrays, scans, etc as well as a rather interesting examination by a doctor that looked about twelve, (Dr Liam) which (to put it nicely) found no evidence of haemorrhoids and meant the bleeding was even more of a worry.

Other possible diagnoses at this point were Gastritis, Pancreatits and Duodenal Ulcer.  Treatment-wise, I was given Morphine, Methylpred, Fluids, Anti-Emmetics and Stomach Protectors through an IV, while the rest of my medications were put on hold. They felt that these were to blame for the problems, but covered their abscence with extra IV steroids. I did a silly thing at one point and managed to pull the cannula out of my ‘one good vein’, meaning that they had to insert a new one with a fancy probe that finds deeper veins – it worked and I’m glad to have learned that it is an option!

With the pain under control, I was much more settled and so they moved me onto a side ward with five other women, who became good friends over the next few days.  I did have some reservations though, since this was the same ward that I’d had such a bad experience on in August; but the Matron recognised me and promised I would get the right care this time round. For the most part she was right and I had a much better experience at this ‘dreaded hospital’, until I changed wards.

So, I was nil by mouth and had a few investigations lined up once the weekend was over, but I was comfortable for the first time in weeks and even managed to get some sleep.

I had no idea of how things would turn out.


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Stomach Pain Beats All

The pain in my stomach suddenly got much worse last night. I have been keeping up with the new tablet regime but to no avail yet. I rang the GP in the afternoon but he was out on visits and was told to call this morning instead. When I lay down to go to sleep though, I was crippled with pain and was very close to going to the A&E department. In the end, things seemed to settle about 2.00am, so I figured I’d try and wait until morning and eventually managed to sleep. Staying completely still obviously helped.

As soon as I sat up again this morning it was back with a vengence. I rang the GP again, this time to be told that all appointments had been taken but that they’d have a quick work with the doctor; thankfully, he was able to prescribe me a stronger Proton Pump Inhibitor (which protects your stomach), and Gaviscon, plus told me to give my stomach a break from eating meals and to see him asap or go to A&E if those things don’t help.

The pain is in the upper right / central part of my abdomen – so the stomach area.  The last time I had pain like this was ten years ago, when I was in hospital during a major flare. Amongst other things, I couldn’t eat or drink, was suffering from malabsorption and vomiting blood so I was sent for an endoscopy straight away. Frustratingly, so much was going on at that time that I cannot remember what was said about this – it quickly became less significant as my liver and kidneys started to fail and I became even more seriously ill. Maybe it is worth emailing my Rheumy to tell him what is going on and ask if it could be connected. I have my infusion on Thursday too, so might get to see him.

The other similarity to that time is that my hair is falling out a lot. If I even touch it, wisps fall out and if I run my hand through it a whole clump comes away. Last time this happened I had to have it all cut off into a Halle Berry crop, which did not look good. I like my long hair 😦

As a good friend recently said, ‘it never rains but it pours’ and I concur!


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Saw my GP this evening about the ongoing chest and stomach pains / nausea. He thinks I have a number of possible things going on – firstly, inflammation in my stomach from the Naproxen, Cyclosporin and extra Prednisolone; so, he has doubled my dose of Lansoprezole, which I take to protect my stomach and has also added a stronger anti-sickness tablet. He explained that this wasn’t just to help the nausea, but to close the stomach and push any acid out and through my system faster. I don’t get acid (not that I know of) but it is worthe a try.

He examined both my stomach and chest. My stomach was quite tender and my liver and spleen slightly enlarged, which is common with my flares I think; at least, I’ve had it several times before. I didn’t think my chest was sore to touch and was just saying so, when he pressed a certain spot and made me yelp. This confuses things, as it is not consistent with my other symptoms – pain increasing on lying down and after exertion, plus breathlessness. The chances are I have inflammation in the joints within the chest as well as the previous diagnosis of Pericarditis, or it could just be one or the other, it is hard to distinguish between the two. It has improved with the antibiotics and/or extra Prednisolone at least and the above medication may help if excess acid is playing a part.

He tried to convince me to try Butrans patches again and again I refused. I do have my reasons, mainly that last time I was on something equally as strong, it masked another serious problem and could have cost me my life.  Another reason is that a doctor once told me that if I became reliant on such strong pain meds so young, if anything ‘serious’ ever happened (such as an accident or surgery) then it would be difficult to control that pain and would probably require an epidural. That is not a place I want to get to.

So all we can do is see if the medication changes helps.


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Cyclosporin is the latest drug to be examined in the Treatments section. You can find information about the drug, as well as my own experiences with it, here:


I’ll also add some articles and further reading when I can. I know there aren’t many people treated with this drug any more; but if you are, please share your experience by leaving a comment at the bottom of the page.


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Paying the Price…Again!

So much for feeling better. After my little trip out the other day, I was crippled with terrible pains in my chest from Monday onwards. I was quite worried as it all seemed too similar to this exact time last year, when I developed neutropenia (thanks to Azathioprine) and then Pericarditis, and had to stay in an isolation room in hospital, and I really didn’t want a repeat of all that.

I rang my GP and he prescribed me some strong antibiotics, just in case the pain was caused by infection – he was worried by the recent low WBCs and Neutrophils.  I emailed my Rheumy an update too, telling him about the increased rash, fevers, nausea and chest pain, and he suggested I also increase my Prednisolone to 40mg in case it was caused by inflammation. Both wanted to avoid me needing to be admitted into hospital thankfully – I’m much more comfortable resting at home with my laptop and books.

My Rheumy also wanted to know the results of the blood test I had on Tuesday, when they came back, as they might help explain things. Well, I rang for the results this morning and was told by the receptionist that they were all normal and that they’ve been forwarded to him. I’m glad they’re okay, but it makes me worry that he will think it’s all in my head – I don’t like being ill, but I do prefer to have evidence/answers when I am.

Thankfully, the pain has settled since Monday; although, it does still wake me up during the night. My Rheumy said he would see me in clinic next week if I needed, but I feel like I’d be wasting his time and I’m not sure what more he can do? I guess we just have to see how things go with the extra prednisolone and change to Ciclosporin.

Maybe I just over did things on my ‘walk’ at the weekend… ie. around the furniture store? I keep getting told that I’m doing too much.

If I move any slower though, I’ll be going backwards.


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Imagine my surprise when, scanning through recent Still’s / Rheumatology articles, I find one regarding my own hospital Trust and Rheumatologist, who are opening a Multi-Disciplinary Rheumatology Centre. I’m treated at North Manchester General and Dr Snowden is my consultant so I feel oddly proud; plus it all sounds very exciting!

You can read more about the centre here.



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Short and Sweet

Beautiful sunny winter’s day here, so we went to test my wobbly legs outdoors and get some fresh air.  Didn’t walk far, but further than I have for a while and with less limping, so that’s good.

I’m shattered now though,



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I wish that for once I could just feel better.

It’s a week since I had the cortisone injections and a few joints have improved; I was pleased to be walking better than I was previously, although I still don’t know how much better I’ll be at walking distances as I haven’t been anywhere! I also began to wake a bit earlier each morning, which I took as another good sign, and I’m no longer feeling low.

At the same time though, I am having more temperatures and rashes on a daily basis, I’ve been feeling queasy and last night I was finally sick. I don’t know if this is Still’s related, mediation related or just a bug that I’ve picked up. I don’t remember if I had any side effects the last time I stopped Methotrexate as it was over ten years ago and I was very ill in hospital at the time. It seems unlikely I’d feel the effects only two days after being due a dose though. I also can’t remember having any side effects from the Ciclosporin in the past, so I’ll just have to see how I go.

Joints-wise, the hip pain is still prominent and I keep getting twinges in my neck again, so I’m back to the exercises and minimising time spent at my computer, reading, etc… anything to prevent me needing to go on the Diazepam again. I’ll give the hip until Tuesday and let my rheumy know how things stand (or sit as the case may be).

So I’m a bit all over the place – neither here nor there.

Here’s another rash photo for those interested – it tends to be red and patchy on my face, neck and chest and gets more ‘speckled’ on my abdomen and arms, particularly on the back of my hands.

Rash starts to spread during a high temp.

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