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Posts Tagged ‘Flare’

As I mentioned in my last post, I have had more good days than bad this week and am feeling much better in myself, even if the joint pain and swelling is still there.

This could be down to the Orencia and Methotrexate combination I started at the end of June; I have had three infusions so far and my next one is scheduled for August 25th.  I was sure that I felt a difference after the first, I had more energy and even managed to have a dance at my friend’s wedding a couple of days later. However, at my last infusion, my rheumy was concerned that my test results were actually getting worse, which of course doesn’t fit.  I was confused  but decided to listen to my body and take every day for what it was; time would tell in the end.

I have read of other people who experienced an increase in wellbeing and energy levels, whilst being treated with Orencia, despite still having active disease and joint involvement.  Perhaps this is the case for me, or maybe it just takes little longer to dampen down the inflammation?  But there is another factor that could explain my current ‘wellness’ and that is where the dilemma comes into play:

Both times I have been on the better side I have been taking 20mg of Prednisolone, which I initially tried to taper off.  The most recent increase to 20mg was just under two weeks ago and I’m still currently taking it, grateful for some relief.  We all know how effective Prednisolone is at providing this short-term relief so it would seem that this is obviously to thank for my good days (in part at the very least). 

But my worry is, how are we supposed to know how well a new drug is working for us if we ‘mask’ our symptoms and disease activity by taking Prednisolone and even pain killers?  I know that the theory is to taper off the steroids after so long on the new treatment to see if it ‘holds’ things at bay, but how disappointing to go through months of treatment, convinced that it is working and find out that it was only the Prednisolone doing its stuff, not to mention the frustration of having to do it all over again with another drug.

I’m not suggesting we shouldn’t use steroids and pain killers to tide us over the worst times; in fact, I don’t even want to think how bad I’d feel without them!  I just wish there was an easier way.  It’s hard to explain to people that see me looking a little better and want to enthuse about my new treatment, that it might not be down to that after all – just a pred boost.  Speaking of which, I saw my manager while I was out yesterday and immediately felt guilt ridden.  There I am, out and about, yet unable to let them know even a general idea of when I’ll be fit to return to work.

This doesnt mean I have given up on the Orencia working for me.  I’m probably being a bit impatient; after all, I was told it could take 3-6 months to really feel any benefits and I’m not even at the two month mark yet.  I just don’t want to have to depend on the Prednisolone for good days over the next few months and I want to be able to tell whether my new treatment is helping or not – even a general idea would be good. If only scientists could produce a similar drug to Prednisolone, without all the horrible side effects, all of our problems would be solved.

It’s a battle of wills, but we must keep fighting.

L

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This time last week I was preparing to make my great escape from the hospital.  Thankfully, I haven’t been any worse since discharging myself, or for not actually receiving the Blood Transfusion I went in for; in fact, if anything, I’ve been on the better side.

I know this is because of two main things:

  1. I increased my Prednisolone back to 20mg after the hospital stay, so terrified was I of needing to go back! I should mention that my Rheumy gives me permission to do this. After many years dealing with Still’s I have learnt to judge when I need to increase my steroids and always tend to try and keep it as low as possible, due to my love/hate relationship with the stuff.  I am very careful with my tapering too.
  2. The GP made me agree to take my full dose of Tramadol for pain relief, which has taken the worst of the pain away at least.  I’ve also been taking the Naproxen he prescribed as a longshot.

These weren’t easy decisions for me to make.  I really don’t like dosing myself up every day and so have been keeping it all to a minimum for too long, which hasn’t done me any favours.  I realise this now; I was being stubborn and I wouldn’t advise it.  I needed this relief and, hopefully, it will only be short term while we get the Still’s under control again.

The Prednisolone must be doing its thing because I am managing to get out of bed on my own in the morning and am getting about okay; the chest pain and breathlessness has eased too.  My joints still aren’t happy though, with the odd grumble from my hips, stiffening of both knees and then of course, my left elbow and shoulder joints, which are terribly hot, stiff and swollen and seem to be unphased by any treatment – even the cortisone shots I had a while back.  It’s all bearable though.

On an even more positive note, we had a couple of friends round last night to discuss our trip to New York next month. Five of us are going to celebrate a 30th Birthday, but one friend lives in Spain so she couldn’t make it round obviously!  We spent the time talking about what we want to see while we’re there and, although I know it may not be easy physically, I am extremely excited about it all.  I don’t care if I have to pump myself up with Prednisolone and painkillers, I don’t want to miss a thing!

Hopefully, I’ll be feeling some definite improvement from the Orencia and Methotrexate by then anyway. I am now on week 6 of Orencia plus will be taking my 5th dose of Mtx tomorrow evening and I was told it usually takes 8-12 weeks for the two to be fully effective together.  Until then, I’ll just carry on being a good girl and take what I need to give me a better quality of life… I promise doc!

L

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Following on from yesterday’s retrospective post, I spent the night on the Short Stay Ward with a view to have a CT scan and a couple of other tests today.  Before I carry on, I would like to point out that I have no problem staying in hospital and I’m not one of these people that look for a reason to complain or be awkward.

I’ve mentioned here before that I often struggle in the mornings at the moment, ranging from needing help to sit myself up in bed, to waiting for my painkillers to work before I can function well enough to shower, dress and generally move about better.  This morning was one of those days that I woke up unable to really move thanks to pain and stiffness, not even to lift the blanket away – as a young person, this is difficult to admit and I would certainly never exaggerate or play on it in any way.

The breakfast lady woke me and put a bowl of cereal and a hot drink on the bedside table; I told her that I needed some help to sit up and eat and she said she’d let someone know.  Twenty minutes later, someone else came and took my uneaten breakfast away and placed my tablets on the table instead. Again, I tried to explain that I hadn’t eaten because I needed help to get myself up and would do to take my tablets too, she said she’d let someone know but later came back with a wash bowl and told me to have a wash as ‘it would make me feel better’. I tried to explain that I couldn’t get myself up AGAIN but she just huffed and went away before I had chance to finish.

I was starting to really hurt now, being stuck as I was in the same position.  Then half an hour or so later, two nurses came to change the bed and told me I’d have to get up. I tried to explain again that I would need some help sitting up; their response was to stand and stare then say ‘Just swing your legs round and sit yourself up’. Not very helpful but I kept calm and tried to explain that I couldn’t as I was in a lot of pain. ‘So why haven’t you taken your painkillers then?’ they asked me, quite sharp by this point. I couldn’t believe they had to ask. ‘Well it’s not like we can lift you up, you’re not a baby’. The other one spat.

I was just trying to explain that all I was asking was for a bit of a push/ support on my back to prop me up in a seated position, from which I’d eventually be able to unfurl my locked arms and legs, when the first nurse grabbed me by the (extremely painful) arms and started to drag me to the edge of the bed; because I ended up horizontal across it, the second nurse proceeded to grab my ankles and pull me by them too. I don’t know if they were expecting a miraculous recovery, for me to sit up and say ‘okay I give in, I can actually sit up I just wanted to make a fuss…’ but if it had carried on a few seconds more I’d have ended up on the floor.

Thankfully, at that point, a doctor appeared and asked them what was going on.  I just burst into tears and in all my life, in all the times I’ve spent in hospital, I have never cried. But then I have never been made to feel so humiliated either.  The doctor calmed me down and asked me what the problem was; as soon as I told him he gently gave me the right support to prop me up in bed so that I could take my painkillers and told the nurses that it was actually in my admission notes that I was having some mobility problems and might need some help.

As always, I was moving much better after a couple of hours and had to then listen to the two above nurses discussing how I’d had a ‘miraculous recovery’, at the end of my bed of all places! When I tried to explain to them the reality of living with Still’s Disease and flares, I was met with dirty looks and they promptly walked off, but I had to put up with petty, snide remarks for the remainder of their shift.

You can probably tell that this incident upset me but I’d been told that my CT Scan was booked for 2.45pm and that I could go home if it was clear, so I just kept my head down reading until that time, still thinking it best to get the scan done.  Sure enough, at 2.45pm I was taken down to the scanning room, only for them to tell me that I was supposed to have a green canula fitted to inject the contrast that would show up my blood vessels.  The ward knew this but nobody had even tried. The doctor there did try to insert one, but because of my bad veins she couldn’t manage and so I was sent back to the ward with the promise that someone would insert the canula there and take me back down before it closed at 5pm. Funnily enough, nobody did.

It became obvious to me that I wouldn’t be getting the scan until the next day and I couldn’t bear another morning like this one, so I made the decision to discharge myself against their advice. The ward matron was on duty by that point and wanted to know my reasons and so I told her about my experience.  She did apologise and said she had a friend with Still’s Disease; I hope that at some point she stands up for this friend and myself, by educating the two ignorant nurses in question.

Anyway, I have never been so relieved to be away from a hospital. What I have accounted here is my own main experiences but I also witnessed a lot of other mistakes and mistreatment of patients that I will be including in a formal complaint to the hospital.  Now, my doctors might think me clingy, but this had made me feel even more certain that I don’t want to be treated anywhere else but at my own hospital, with people that know my background; people I trust.

Oh, and I never did get the blood transfusion!

L

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I’ve written about the rollercoaster nature of living with Still’s Disease before and it seems like I’ve taken a seat on the ‘Big One’ once again.  Last night I could barely move because I was in such pain; every joint was throbbing and painful, my muscles tender, chest sore with my heart racing and pounding in my ears, plus I was hot/clammy to touch.  I tried to just sleep but I just hurt too much and ended up getting upset. This had all come completely out of the blue at a time when I was trying to stay optmistic. In the end, I had to take a mild sleeping tablet – sleepless nights are even more unbearable when you’re in too much pain to even toss and turn.

I woke up this morning still in quite a bit of pain, but at least I was able to get out of bed and walk about on my own.  I hope this means that things will get a little bit better from here, or at least no worse; I was worried where they might be heading. My plan right now is to call my GP on Monday and explain to him the turn things have taken. He might take my next bloodtest a bit earlier to make sure things aren’t getting any worse and also to keep an eye on the folate levels, as I’m still convinced that the Methotrexate is playing a part in all this. Secondly, I think I need to reassess my pain killers because, as much as I despise relying on them, I need some relief right now.

We were supposed to be out celebrating a family birthday this evening but looks like I’ll have to give it a miss. *sigh*  But look on the bright side, I get to spend some extra time with Jack Bauer… oh and my boyfriend of course 😉

L

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Perhaps my bubble is about to burst...?

After everything that happened at the hospital yesterday, I was feeling pretty confused and disheartened, plus I was absolutely exhausted.  Hospital visits do this to me – so much energy is put into preparing myself for them: thinking of the things I need to discuss, prioritising a host of symptoms, making notes and then trying to make sure I express everything that I need to clearly… and then in the appointment itself, taking in what the consultant says, absorbing and digesting it, understanding what it means for me and thinking about the consequences of any decisions on the present and the future. 

When I’m flaring, I go to these appointments with a sense of anticipation, that maybe my doctor will have a new solution, a miracle up his sleeve that will make me feel better – something solid I can take away with me there and then.  Although, realistically, I know that this isn’t how the game of treating Still’s Disease goes – it’s more like snakes and ladders, just as you think you’re getting somewhere, you get sent sliding back down to the bottom – so perhaps I’m setting myself up for disappointment each time. We try to keep our discussions positive, but at the same time you can’t shake the feeling of uncertainty about it all and I always leave feeling like I’ve been through the wringer, with my mind whirling and body exhausted.

However, I woke up this morning feeling more like myself, determined not to let this latest setback get me down; yes, the things we discussed were worrying and confusing but at least I was feeling more able to do certain things and surely I need to make the most of that even if I can’t explain it. Maybe the bloodwork is just taking its time catching up, I don’t know, but I was happy just to carry on and know that my doctors were keeping an eye on things.

Morning and early afternoon passed by fine; I’d managed to get a few things done when I noticed I was getting quite a bit more pain in certain joints.  Half an hour later, I felt it was bad enough to require an additional dose of painkillers (I try and stick to 2 doses a day) and as my heart was racing too (156 is high even for me), I decided to have a bit of a nap.  I must have dozed off because it was teatime when I woke up, but I quickly realised that the pain had gone even worse, so much so I couldn’t lift my head from the pillow or move my arms from under the duvet, every inch of my body seemed to burn or throb with pain.

In the end, I needed help to even sit up in the bed and later to hobble about. My boyfriend’s parents were understanding, but I felt embarrassed and ashamed that they had to see me so helpless, especially when it came out of the blue. How can I explain it to them, if I don’t understand it myself? There are a number of thoughts floating round my head right now – could it just be that I’ve been building up for another Still’s flare these past few weeks, has the Methotrexate effected me in some way or maybe even the Orenia? Or has my mind been playing tricks on me all this time?

Do you think it’s possible to think yourself better, even if you’re not?  I was soo looking forward to starting Orencia that maybe I built my hopes up so much that I believed it was going to help and expected nothing less.  Perhaps I imagined the tipsiness, the tingling and the new strength and energy, getting through the wedding weekend on optimism and willpower alone. What if it has just been a case of mind over matter so far, and now that I’ve been faced with the reality of my bloodwork the illusion is shattered and it’s just not enough to keep the physical things away anymore..?

There are no easy answers. All I know is that I haven’t hurt like this for a while and I’m at a total loss what to do.

L

Ps. Most of this post was written the morning after, I was just too sore to even type last night.

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Well, what a day.

Arrived on the ward (just in time for lunch) and had my canula fitted, bloods and obs taken etc.  The nurses asked how I’d been since last time and I told them I had definitely noticed an improvement since starting the Orencia infusions.  I have a bit of a wait after that so settled down with my Kindle; an hour later one of the nurses came in looking quite worried and asked me if I was sure I was feeling okay, that my test results had come back and were so bad they were trying to contact my Rheumy.

They spoke to him on the phone and he said he’d pop up when he could. I was glad of the chance to talk things over with him, as I have been feeling confused and the blood test results only made me more so.  I told him how well I had felt after the first infusion and that I was noticing some improvement with my energy levels even if it hadn’t reached my joints yet, many of which are still stiff and painful.  I explained that the Methotrexate had given me some side effects, that these had lessened slightly to effect me mostly on just a few days (Friday, Saturday & Sunday) but left me feeling drained and sickly.

Today was supposed to be one of the good days – I thought I had a bit of colour – but my Rheumy said I was noticeably pale, so I told him about the bad days when I look like a zombie with purple rings round my eyes.  He told me my haemoglobin level is 8.0, so that at least explains it.  I am worried that it is the Methotrexate causing the Anaemia but my Rheumy says it’s more likely to do with the Still’s Disease being active and having lots of inflammation – Anaemia of Chronic Disease.  My GP on the other hand, thinks I have Megaloblastic Anaemia caused by low folate levels and since Mtx is a folate depleter it would make sense that it has become worse since starting it, even with taking a Folic Acid supplement.

They did check my Folate level yesterday but the result didn’t come back while I was there; Rheumy said he’d keep an eye on things and see me again at my next infusion in four weeks.  Hopefully by then things will have settled down and the methotrexate will be doing more than making me feel queasy – it takes 8-12 weeks for it to boost the mechanism of the Orencia.

I did at least get my infusion, but I was left completely befuddled by what had been discussed.  How can I feel so certain of an improvement when my bloodwork is getting progressively worse? Am I imagining that I can get out of bed in the morning, without assistance? That on most days I am showered and dressed by 10.00am instead of having to wait until my painkillers etc kick in, usually only getting myself ready after noon?  I know that I’m still in quite a bit of pain with my joints but I was happy that I at least had a bit more energy; but how can even this be when I am so anaemic?

There have been times when I’ve felt dreadful and my results haven’t been too bad, so just how reliable are they?  I guess all I can do is carry on the way I have recently, believing that I at least feel a little bit better, and hope that the results settle down and catch up with how I’m feeling. If I think about things too much, I’m just going to get more confused and disheartened with it all and I don’t want to give up on Orencia just yet.

L

Previous posts related to this one:

First Orencia / Abatacept Infusion

Second Orencia Infusion

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A week today my very good friend will be getting married and I will hopefully be her bridesmaid. 

I am, however, increasingly concerned as to how I am going to manage this three day event, despite my efforts to think positive and rest and blah blah that people keep advising me. 

I don’t want to turn the focus of this blog to my own symptoms, but they are sure hard to ignore right now.  Today has been one long power nap and I feel that after benefiting from the steroid injections for about ten days, things are starting to fall apart at the seams again – the left knee is swollen, fingers are stiff and the left elbow locked at 120 degrees and things just generally hurt.  Plus I have this pain in my chest again, although it is different from last time when I was admitted with Pericarditis.  I have a feeling that the awkward position of my elbow is putting extra strain on the muscles in my shoulder/chest and causing the pain, but yowser it hurts and is distracting me from the things I should be doing in preparation for next week.

I mean, I have my outfits sorted but my hair and nails could do with some attention and I need to go to the shops for cards etc, decide on a wedding gift, sort the dogsitter out with some food, book transport for myself and the photographer and ohmygodaboutamillionotherthings… but I am just about managing to sit up and type this.  I am usually so organised too, Still’s Disease robs me of that ability.

I really hope that on top of everything else, I don’t go and forget something.

At least I don’t have the rings.

L

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