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Posts Tagged ‘Cortisone Injections’

I don’t want to get too excited, but I have noticed a definite improvement in my pain levels and joint mobility since my Infliximab infusion on Wednesday. As I mentioned before though, I can’t say that this is down to the Infliximab just yet, since I had a big dose of IV steroid at the same time. Saying that, I’ve had plenty of high dose steroids in one way or the other throughout this flare and I don’t think I’ve noticed such a difference before, so… fingers crossed, eek.

Steroids can be wonderful at times, especially for treating acute inflammation; if only they didn’t come with the long list of side effects! Now, it’s not by any means the most serious of these side effects, but the thing that is frustrating me right now is a massive case of the steroid munchies. Anyone who has been on high doses of steroid will know what I mean by this – it’s a constant feeling of being extremely hungry, to the point where you have the gnawing pain in your stomach and feel sick if you let it carry on too long. You want to eat everything and when you are not eating, you are thinking about what is next on the menu; you crave all the wrong things – chocolate, cakes, burgers, fried chicken, pizza, pies, cheese and creamy things… (I’m going to stop before I do a Homer drool) – tasty, but not good for you in the long run. What’s even worse, is that you never, ever ever feel full. I could just eat and eat.

Weight gain is already one of the most common side effects of taking steroids, but most of this is due to water retention in specific areas, which (in my experience) is easily reversible; as you reduce the dosage, you pee more and the weight and added inches drop off. The problem with having this huge appetite associated with the ‘steroid munchies’, is that it is so very easy to over-eat; it’s difficult not to really. With over-eating comes even more weight gain, but this time it is ‘fat weight’ and this will be much harder to shift when you finally reduce the steroids. And I’m not just taking this into account for vanity reasons, but for health reasons too – we don’t need the extra strain on our joints or for weight problems to prevent us from exercising/rehabilitation in the longterm.

I was feeling pretty miserable by this conundrum and the constant hunger gnawing away at me. It’s funny at first when people joke about you eating anything that’s not nailed down plus, as a huge food-lover anyway, it’s nice to tuck and enjoy your meals and treats; but I didn’t want it to get out of control. I decided that the best thing to do was to look into foods that were very filling and that had some nutritional value to them too, instead of wolfing down crisps, biscuits and cakes whenever I had the urge. I also gave myself set times to eat snacks, little and often – breakfast at 8.30am, a snack at 11am, lunch at 1.30pm, snack at 3-4pm and then our evening meal between 6 -7pm, drinking plenty of water and the occasional milky drink in between. (Did you know that very often thirst can be mistaken for hunger?). I was hoping that this would mean I could feel fuller for longer and nip those cravings in the bud.

Some of the foods I found were:

  • Porridge and oat-based cereals, mixed with dried fruit and nuts.
  • Porridge, banana and honey to sweeten if needed.
  • Banana and Natural yoghurt, with honey and/or nuts if needed.
  • Low fat Rice pudding, with a spoonful of jam or fruit conserve.
  • Dried fruit and nut mixes.
  • Dried apricots, prunes, dates and figs (can also add these to yoghurt)
  • Ryvita-type crackers with pate (tuna is my favourite), low fat cream cheese or humous dips.
  • Carrot, Cucumber, Celery with low fat dip.
  • Apple and Cheese.
  • Cheese or cream cheese with wholemeal crackers.
  • Rocket, walnut and apple salad.
  • Couscous and tuna.
  • Flapjacks, preferably with seeds or fruits rather than chocolate/yoghurt topping but hey, treats are still okay.
  • Fig rolls – not necessarily healthy but I’ve developed a ‘thing’ for them 😛

If anyone has any other suggestions, please feel free to share!

My first Graze box

For people reading in the UK, I would also like to recommend a company called Graze, who send  out healthy snack boxes to you through the post, with items ranging from breads, flapjacks, mixed fruit, nuts, seeds, olives, teas, chutneys… well, it’s probably better if you take a look. I had my first box delivered today and am really impressed – you get four different punnets of snacks, each one healthy but tasty and large enough to take the edge off the munchies – it took me an hour of picking to get through one.  I’ve had half of mine today and will have half tomorrow, as I’m due another box on Thursday; but you could quite easily order a box every 4 days or so and have one of the punnets each day.

Another thing I have found useful is a Blackberry app that keeps track of your calorie intake. You do this by entering all of your foods and snacks into it, searching by name / brand etc. The app has a record of calorie and nutritional values for a huge amount of foods and so quickly calculates how much you are eating. It’s also a good way of finding out what you may need to eat more or less of – for instance, I noticed that because of the dried fruit I was eating, I was recording a high sugar level and so need to balance this out by swapping some fruit with the more savoury choices above. The app I’m using is called ‘MyFitnessPal’ but there are others too and even better, they’re free. For those who don’t use apps, there are websites that do exactly the same thing too – the one I’m most familiar with is LiveStrong’s The Daily Plate.

With all of these things in place, I feel I am finally conquering the Steroid Munchies and can at least make sure that I keep my food intake within reason. Yes, I still get the occasional craving and I haven’t totally banished the treats (that would just be silly) but I am more in control and feel like things aren’t going to get out of hand without me even realising.

Everything in moderation as my Mum always says!

L

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After two weeks in hospital, and one of my scariest flare ups, I finally came home today. It was a slightly confusing turn of events, as on Thursday they were talking about me going to a mobility rehabilitation centre for a time and then suddenly the arrangements were being made for me to go home, even though everyone seemed to have different ideas about whether I was ready for this. After a lot of discussion, I made the decision that I would rather be at home to continue my recovery as I didn’t really see what more could be done for me as an inpatient, now my pain was controlled and I’d had all the relevent procedures. I’m lucky to have good support and facilities at home, plus they have arranged for me to have home physio and an assessment by the Occupational therapists to see if there is anything more I would benefit from.

My elbow had been the main factor holding me back once my hips were sorted, as it became swollen, restricted and very painful – especially when needing to bear weight through it to use the walker/crutches. My Rheumy came to examine it and found more inflammation and fluid around the joint, so I had this injected with cortisone too, which should settle it down and give me more movement and use of that left arm. I tried the stairs with crutches for the first time and although it was hard going, I think I can manage doing it once a day until I’m strong enough to try more. One important factor that has been reinstilled with me during my hospital stay is just how important it is to keep moving, even through pain and inflammation, and this is something I will be posting about once I catch up on everything.

The past two weeks have been a real eye opener for me in many different ways, so I have lots to post about. The wordpress format seems to have changed while I was away, but I’m hoping that once I figure it out I will be able to backdate posts relating to my stay, while updating with current issues as before. The reason I feel the need to backdate is that this blog also forms a record of my disease activity, which is useful for myself (and hopefully others) to look back on. I was making notes on paper during my stay, so hopefully will be able to keep it accurate.

It feels really good to be home and I’m confident that it will speed up my recovery; little things like needing to use steps to visit my little furbaby Jasper will encourage me to do so daily and even trips to the toilet provide more exercise than having a toilet in my room. I just have to remember to go as soon as I need to as it takes me about 15 minutes to get there with my walker and I’ve had a few close calls already!

Finally, thank you to everybody who visited, sent cards and messages of support to me while I was away. It makes all the difference in the world to dealing with all this and I count myself very lucky to have you all.

Take care all,

L

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{Backdated Post}

Today was a rather confusing day. I woke up in a lot more pain than usual and several jonts in my arms had started to swell and seize up again; not surprising when I was having to bear my weight through them when using the zimmer frame to walk about.  Disappointingly, I needed more help than I had done over the past couple of days and the nurses soon noticed and assured me they’d get in touch with my doctors and the Pain team.

Late morning, the Physios arrived to see me. Despite my painful arm joints, I had to keep on using the zimmer as the ‘lesser of two evils’; I couldn’t come this far in building up my walking, only to let my hard work go down the drain to protect my arms. Plus I was making progress. Since the cortisone injection in my hip the previous day, I was finally able to lift that stubborn left foot of the floor a few centimetres and take a proper step. This did a lot to reassure me that I would get normal function back, because I was still very worried it would be lost at this point.

The Physios had their concerns too: now that I’d had the procedure to my hip, the rest of my recovery was down to rehabilitation and they mentioned that I was due to go to a Residential Mobility Rehabilitation Unit for a few weeks. However, although I’d benefit pysically, they said that because of my age various people felt that it might not be the best place for me emotionally, being mainly old people there. Instead, they had put the suggestion forward to provide the same support within my own home, which to me sounded much better.  But I knew I had to have that support in place straight away, because I wouldn’t be able to manage on my own and they agreed. They left shortly afterwards, telling me that they would communicate my thoughts and, if it was agreed that I could avoid the Rehab Centre, would start putting the ‘home plan’ into action. They would see me on Monday to make a start on using crutches.

I have to admit, I was a little worried that I’d end up at the Rehabilitation Centre; my Nan had spent time in one, so I had a clear image of what they were like. It sounded promising that I’d get the support at home though and nothing was going to happen just yet, so I tried not to think about it too much. My main concern for now was to sort my elbow and shoulder joints out, so they wouldn’t prevent me from using the zimmer and carrying on with my walking. The day passed as normal; then, at some point in the afternoon, a doctor I hadn’t seen before came to see me. I assumed that he was one of my Consultant’s juniors, come to assess my joints and pain, (which was quite severe by this point), but instead he declared that I was free to go home!

I was a bit stunned as he left the room. Obviously, it was great news that I could go home, but only hours earlier I had been facing the prospect of a Rehab Centre and talking about my next Physio session on Monday…. then again, it was Friday and I know how they like to clear people out before the weekend if possible!  A nurse came in to tell me that my medication was all ready and I asked her all the questions I hadn’t managed to get out with the Doctor: mainly about the support I would receive at home. This wasn’t something she’d been aware of and so she left to chase it up, returning to say that I could only leave when that was arranged and the appropriate equipment provided.

A lot of confusion ensued.

The Physios returned and weren’t very happy that it was all happening so sudden and fast – they had a few hours, last thing on a Friday afternoon, to liase with a different County Trust about providing my care at home – something that proved very difficult, taking over a week to put in place – and to get me up on crutches, ready for home. I was already struggling with the zimmer, but putting weight through my locked elbow using crutches was agony; I knew so and they knew so, but it seemed I just had to grit my teeth and get on with it. I didn’t manage very well – a couple of steps – and the stairs were a nightmare that drove me to tears, but by this point I felt so confused and frustrated with the situation that I just wanted to go home. The Physios had their doubts but the decision had already been made..

Back on the ward, nurses and auxilliaries kept popping in to say their goodbyes. Eventually, my Rheumatologist came to see me and the whole situation suddenly felt too much. Here I was, feeling worse than I had been, unable to do much for myself or to use the crutches to get around and yet being sent home all of a sudden; moreover, I was being told different things by different people about whether I was ready to be home or not. And so I got a bit emotional. I don’t really remember what bothered me the most, I think that was probably the issue – I didn’t know what I felt myself anymore – just bewildered.

My Rheumy explained that I wasn’t actually admitted under his care (as I had come via A&E), but the care of the doctor who had visited me earlier, and it was this doctor’s decision to discharge me. He also explained that now they’d done the procedure, there was little else they could do for me in hospital, but that he was happy to request I stay until Monday if I felt I needed it in order to cope better. But who asks to stay in hospital? If they thought I was well enough to go home, I wanted to go home! Aslong as I had the support they had promised in place. He took a look at my joints before he left for the weekend. There was nothing he could do about the shoulders, since they had only been injected the previous week, but he agreed that we should inject the left elbow. This elbow has troubled me for some time now, swells painfully and locks at an angle, but doesn’t respond very well to cortisone injections; however, it was worth a shot (excuse the pun) if it gave me a better chance with the crutches.

In the end, they weren’t able to provide me with the equipment I needed for home that night and so I had to wait for it the next day. It somehow made staying there harder than it had been, but at least I knew I would be home soon and it gave me a little bit of extra time to practice using the crutches.

I was right to be worried though. Even then, I didn’t realise quite how hard a transition it would be to go home, but we would do it and manage.

L

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Thanks to the cortisone injection in my knee on Thursday, the inflammation is settling down. I can bend it more and am no longer hobbling along like a penguin (or at least less so, I haven’t had chance to test myself out of the house yet).  I’m also getting better at stairs, although I’m still slow because of my sore hip, but maybe that will settle down soon too.

Thus continues my love-hate relationship with steroids.

But for now,  I’m 🙂

L

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After missing my Rheumatologist at my infusion on Thursday, it was nice to find an email from him in my inbox this afternoon. He said that my recent test results were much better than they’ve been for a while now, which would be great news if only it reflected how I feel! The fact is, my joints have been feeling pretty terrible – with the ‘usual’ left shoulder and elbow pain / restricted movement, swollen right knee, sore neck and awful pain in my hips that makes me queasy.

So I don’t understand how my blood test results are improving!

Is my body just a bit slow on the uptake?

Hopefully, it is a good sign though, especially with the brief improvement I had after the first infusion. My theory is that once it builds up in my system a bit more this improvement will be more noticeable and long lasting. The drug is obviously having some effect on my body if my blood is showing changes that it hasn’t done before?! Many people with Still’s Disease receive Tocilizumab once a fortnight rather than four-weekly, so perhaps this is an option to consider too.

He also said he’d be happy to see me in clinic if I felt I needed my knee injecting… but now I’m even more tempted to struggle on a bit longer, in case I see some improvement with the Tocilizumab. Otherwise, I might get a false impression of what’s going on joints-wise. Of course, if things get too bad, I’ll be straight on the phone to him because I don’t want to do more harm than good.

L

Edited to add: I’m sure I have a bit more movement in my knee again, I seemed to be managing steps much easier this evening. Fingers crossed!

 

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I don’t know where this week has gone and can’t believe I’ve neglected the blog for so long, it’s not as if I have nothing to write about.

To update you on the Still’s situation I need to go back to mid-September and my last Orencia infusion, which was quite literally my last.  My blood test results weren’t looking any better at all and the fact that my knees were swelling for the first time in ten years seemed to prove a point; so, both myself and my rheumy came to the conclusion that Orencia wasn’t effective at treating the majority of my symptoms and never would be. Instead, he decided to put things in motion to start Tocilizumab (RoActemra) at my next appointment if the funding application went through fast enough.

I’m pleased to say that he emailed me at the beginning of the week to let me know that my local PCT has agreed to fund the switch to Tocilizumab and I shall be having my first infusion on Thursday 13th October, on the same ward as I’d been going for the Orencia. I’ve heard a lot of good things about this drug and so I’m trying to keep optimistic, although it’s hard to when I haven’t responded typically in the past.

My joints were in a pretty bad state when I saw him in September too, I was finding it difficult to walk/dress etc and needed a few cortisone injections – there were plenty of joints to choose from but in the end I went with my locked left elbow (hoping that some would travel to the shoulder/wrist) and my right knee (hoping it would help the hip too), which I needed to be up to walking the streets of New York. Thankfully, the injections and a short boost in prednisolone did the trick and there was only one time that I struggled on the trip.

Even the time difference didn’t send things flaring, which I had half expected because I know what a major role my sleep pattern plays in keeping me ‘well’. Usually, I only have to go to bed a few hours later and I suffer the next day – I can’t sleep in as that makes me feel rotten, but even if I did I wouldn’t feel any better.  But I managed to say awake for almost 24 hours on both journeys – must have been the steroid rush.

Since being home and reducing my Prednisolone, the aches and pains have slowly started to creep back in but I’m still doing better than I was last month and have been trying to make the most of it by sorting out a few things around the house.  I guess it makes things easier knowing that I’ll be trying a different approach next week.

I’ll leave it there for now and promise not to leave it as long in future – there is so much more I need to write about, not to mention catching up on my articles!

L

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Home from my Rheumy visit and feeling a bit tender; ended up needing my shoulder injected too as there was quite a bit of fluid there.  Steroids always seem to do the trick for me and it usually only takes a few days for things to settle down after having a joint injected so I’m confident I will see some improvement soon.  If only there weren’t so many side effects, treatment would really be that simple. 

I was prompted to discuss this with my rheumy earlier, when a certain conversation got me thinking about the pros and cons of steroid therapy as it stands.  I hate the stuff, but I have to say it works when I need it to and when things get tough, a temporary increase is usually the first thing we try to settle things down.  I have been on various doses over the past fifteen years and that is with just one break, which happens to coincide with my most serious flare up. When I am well I tend to hover around the 2.5mg – 5mg dose and the highest I’ve been on is 80mg when I was very first diagnosed; the rest of the time I’m somewhere in between. 

I hadn’t been overly concerned about this until recently, taking the view that it was important to feel as well as possible and to reduce symptoms and any possible joint damage.  Then I happened to see my consultant’s registrar in clinic and he said that one day I/we would regret all the steroids I have had to have over the years in various forms (Oral, IV, Joint Injections).  Of course this worried me; I have already experienced a lot of effects already, including an increased susceptibility to infection, and persistant tachycardia. Then there are things like heartburn, stretchmarks (ugh) and weight gain (double ugh), which aren’t pleasant but are bearable in comparison to the pain of a flare or joint damage.

The most worrying ones for me are those that are possible in the future, such as adrenal failure, Glaucoma, Diabetes and Osteoporosis.  I know that my bone density is already below the normal range and I am at risk of developing diabetes anyway since it runs it my family.  As for adrenal failure, the possibility of this was already mentioned when I last tried to wean myself off Prednisolone altogether four or five years ago; I could never get past the 2.5mg mark without showing some signs of this.  Perhaps it’s about time that I do start to think about how these and other possible contraindications could effect me in the long-run. 

I guess what surprised me was that two rheumatology practitioners, working together, could have such different opinions on my treatment with steroids: The consultant, who increased my Prednisolone dose and gave me two cortisone shots to ease the flare and the registrar, who was extremely reluctant and in fact wanted me to reduce the dose, despite the flare.  I know one has more experience than the other and perhaps that is the best factor to base a decision on… but how do you know for sure which approach is right?

On top of weighing the risks with the benefits it also becomes a matter of weighing the present with the future; we are always being told to live for the moment and of course we all want to feel as well as possible now.  And is it really worth putting present health on hold to protect the health of a future, in which anything could happen – for better or for worse?

Perhaps it’s simply trying to find a balance between the two? Weighing the risks and benefits of all sorts of things becomes part of life with Still’s Disease after all.

Food for thought.

L

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