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Posts Tagged ‘Prednisolone’

I spent the weekend being looked after by my Mum at her house while my Fiance was working. It was lovely to spend some time with her but, of course, sad too after the loss of Lucy. It did give us chance to talk and grieve though and I feel more at peace now.

I did something really stupid on Saturday. After sixteen years of taking Prednisolone, I somehow forgot to take my 50mg dose in the morning and soon started feeling grottier than I had been. Thankfully, I realised what I’d done some time in the afternoon and took them straight away, but boy did I suffer that night. The pain and fevers crept right back in and I was worried I’d lose a grip on all the progress I’d been making.

I woke up feeling okayish yesterday morning and the day seemed a reasonable day in general. This morning, however, I have woken up with excruciating pain in the whole of my right leg – from hip to toes. I had felt it niggling away in the night, but when I moved the leg first thing it was like waking a beast. There are dull pains, sharp pains, spasms, waves and other sensations running through the joints and the bones. A hefty dose of Oramorph has taken the edge off a little (I’m not tempted to swear now at least!) and I can have some more soon, but I am a bit concerned what this means.

You see, the pattern with my Still’s Disease is that I get a Systemic flare first, with the fevers, rash and random illness (Pericarditis, Neutropenia, Pleural Effusion to name a few); then a few weeks later the Joint flare hits big time. I was hoping the considerable dose of Prednisolone would keep things at bay this time, but this pain does not bode well. Plus the weird bubbling sensations I’m getting could well be the start of some fluid accumulation. I’m trying not to worry about things before they happen, but after things got so bad at the beginning of the year it is hard not to. For now, I’m resting up and back to using a stick since the leg doesn’t seem to want to bear any weight.

Book Recommendation: Another Alice by Alice Peterson

For the past few days I have been reading an autobiography of a woman who was diagnosed with Rheumatoid Arthritis at the age of 18ish and thought I’d share it with you. There are some differences between life with RA and Still’s Disease, but I still felt that I could relate to a lot of her experiences and found it an interesting read – one of those that makes you want to shout ‘I know exactly what you mean!’ She had a tough time of it, especially as she was a budding professional tennis player when symptoms started, yet I didn’t find it depressing just realistic. There is a section on her tennis career at the start; but, if that doesn’t interest you, it is quite easy to skip ahead to the RA story as chapters have obvious titles and you don’t miss anything from doing so. Equally, bear with that section if you can; I did and felt it summed up that sense of loss that comes with initial diagnosis, especially as a young person.

This could also be a good book to share with friends and family that want to try and understand what it is like to go through life with an illness like RA or Still’s. She explains her pain, her alienation and how she adapted and got over her feelings of shame/embarassment towards such an illness really well.

Give it a go and see what you think,

L

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I haven’t posted a real update for a while, so thought I’d do that before I start on a few topics that I’d like to discuss over the coming weeks.

I think it’s safe to say that I am responding well to the Infliximab infusions, as I am relatively pain free these days and all joints are mobile, with little or no swelling. I am still taking 60mg of Morphine twice a day (down from 140mg), but am working with my GP to reduce this. We’ve come to a bit of a standstill at the moment because I do get some pain from my reoccurring Gastritis, but once this is under control with the stronger stomach medication, I aim to become Morphine-free and hopefully will have no underlying pain.

The Gastritis is probably my main problem right now. I had my first episode of this earlier in the year, just before my major flare at the end of January, and it is thought that the Gastritis contributed to this, since the stomach inflammation meant that I was not absorbing my Still’s medication adequately. I now take Esomeprazole and Motilium three times a day and also avoid acidic food and drink, but still it niggles away. A friend, with Still’s and similar gastric trouble, has suggested that it could be related to the IV biologics that we take and so I’m going to look into this at some point. If you have experienced anything similar whilst on any of the IV biologics, please comment – it would be interesting to see if this is the case.

The Infliximab infusions themselves are going well, although I did suffer a bit towards the end of the eight week interval. I noticed that rash, temperatures and some joint pain returned at about five-six weeks post-infusion. As a result, my Rheumatologist has prescribed it every six weeks instead. I haven’t experienced any major side effects from the drug apart from getting a very sore, ulcerated mouth a couple of weeks later. I do seem to be more prone to infection in general though, something I never really noticed with any of the other medications, despite their immuno-suppressant action. I currently have the first cold and throat infection I’ve had for years, so I’m being extra careful.

As I have briefly mentioned in a previous post, I am having some problems with my finger and hand joints being very stiff and painful, especially first thing in the morning. This is unusual in itself, since any previous hand involvement has always been during times of full-blown flare. My only thought is that six months on crutches has put extra pressure on those particular joints, so hopefully it will only be temporary… especially now that I am off crutches altogether! Yep, I felt that they were holding me back on our recent trip to Paris and so threw them into the River Seine (not literally). I need a bit of support from people at times and have the odd spell of vertigo, where my brain seems to forget how to balance without sticks, but I am finally back on my feet and feel like I can only get stronger from here.

I have also managed to get down to 5mg of Prednisolone, the lowest I’ve been since about 2007 if I remember rightly. I would love to get off the stuff completely of course, but for now I am happy with this low maintenance dose and would prefer to get rid of the Morphine. I don’t want to be doing too much too soon, in case I put all this success into jeopardy, plus I have to save some goals for the future right? 😉

All in all, things seem to be on the up (touch wood), but don’t worry – I’ll still find plenty to post about!

Here’s to Infliximab and the future,

Cin cin

L

Ps I have updated the ‘My Story’ page and also added some new Articles to the Articles section.

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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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Had my weekly appointment with the nurse to check my wound this morning and was mixed news.  The good news is that it looks like the Pseudamonas infection has cleared up, phew. The bad news is that the centre of the wound is still not healing over, which it should have done a while ago now. Obviously, all the medication I take for Still’s Disease means that I do heal at a slower rate, but even taking that into account it’s been going on too long.

So the solution she came up with is to have the area cauterized. Sounds painful, as to me the word ‘cauterize’ conjures images of sizzling, smoking flesh… but in this case they just use a silver nitrate ‘pen’ and so the procedure shouldn’t hurt.  The idea is to seal off the blood supply to the rogue tissue and remind it to heal over; she thinks there is a good chance it will speed things along a bit.

Since I was heading that way anyway, I offered to take the prescription round to my GP surgery and picked up my repeat while I was there. The GP himself was behind the reception desk and asked how I was – how nice to be at a surgery where the doctor doesn’t rely on notes to know who you are!  He also mentioned that he’d noticed I wasn’t taking anything to protect my bones alongside the Prednisolone and wanted to add something to my prescription. I explained that I’d had CalciChew D Forte in the past but it had made me sick and previous GPs had said there were no alternatives. He rolled his eyes and suggested something called Adcal-D3, even offering me a choice between Lemon and Tutti Frutti – I felt spoilt!

I’m glad he mentioned it to be honest as it is something that I’d been meaning to sort out myself but kept getting pushed aside by other things. I already have evidence of thinning bones and Osteoporosis runs in the family so I need to protect them as much as possible. I’ve had no negative effects from taking the Adcal so far… in fact, they’re quite tasty! (I definitely recommend tutti-frutti!)

L

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Apologies if this post is a bit rough around the edges, but I wrote most of it post-surgery and I’m feeling rough around the edges too!

Infusion days always feel full of hope at first, that today could be the day that things turn around. We arrived on the ward at the normal time and had the usual pre-infusion checks – Blood test, BP, Pulse, Temp etc.  The nurse asked about any new symptoms / pains, so I had to mention the stitch-like pain beneath my ribcage, even though it could disappear as fast as it came – there have been no obvious side effects from the Orencia, thankfully.  With the cannula fitted easily, it was back to waiting for the test results and the go ahead for pharmacy to mix the infusion.

My rheumatologist came to see me a couple of hours later and I filled him in on how things had been since the last infusion – to cut it short, that I’d been having too many days when I couldn’t even get out of bed on my own and so had increased my Prednisolone to 20mg again, and that I’d been more stable since but still not brilliant.  My blood test results told the same story, I was still anaemic with a haemoglobin of 8.3, but there was a slight improvement in my inflammation markers, with my CRP down from 112 to 80ish, thanks to the extra steroid.

For the first time since starting Orencia, I am beginning to lose my enthusiasm for it and my rheumy pretty much admitted the same thing.  We both want to give it a full opportunity to work though, so are going to stick with the infusions a bit longer. I mentioned that it has definitely helped with the fatigue, which is the difference that I noticed straight away and what got my hopes up initially, but it just hasn’t reached the joints yet and I’m not sure if it will.

The infusion itself went fine, no line resistance thanks to the vein having time to recover and sticking to those guidelines too of course! I didn’t feel the rush I had felt after my first few infusions but then I’d had a late night and was pretty shattered anyway.  I’m trying not to read too much into it, but it is getting harder to believe things could turn around at this point.  I just don’t want to be negative but at the same time I need to be realistic.

My next infusion is in three weeks, rather than four, to fit in with my trip to New York, and in the mean time I need to double the dose of Methotrexate to 15mg – ugh.  I am definitely not enthusiastic about that but I’m willing to give it a go if it gives the Orencia a better chance.  It is still smaller than the dose I was on all those years ago; I just hope I don’t get hit with terrible nausea when things have been so good so far – I don’t want to be sick on the plane or in New York(or anywhere for that matter!)

Speaking of New York, my rheumy seemed really pleased that I was going and said it was one of his favourite places.  We made a plan to try and make sure I will be as well as possible for going, including the early infusion and then a couple of joint injections to give me some relief/movement in this left arm, and maybe another increase in the Prednisolone.  I felt really pleased that he was supporting me, because it reaffirms that I can’t let the Still’s Disease get in the way of enjoying my life.

So for now, I’m just trying to take it a day at a time and not look too far ahead. Ce sera sera.

L

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Things have been pretty stable since I increased the Prednisolone again a couple of weeks ago, I still have some pain and general wonkiness but it has been manageable.  So when my amazingly fantastic friend suggested an outing to the zoo yesterday, I didn’t even hesitate – I mean, Lions and Tigers and Bears…oh my!

We had a brilliant day, seeing all the animals (my favourites being the Lions and Red Panda  – the cute little fella in the picture ^), but the best thing was that I managed to keep up with all the walking, and we did quite a bit of that. In fact, I almost forgot about all the Still’s stuff and just felt like my ‘usual’ self.  Hopefully this is a good sign of things to come – it is only a month until we go to New York now after all 🙂

I have been a little extra tired and sore today, but that’s the price we have to pay sometimes and it’ll pass. The HS has been flaring up something rotten and I seem to be glued to hot compresses, but at least this time next week it should all be sorted out – if the surgery does go ahead.  It’s due to be another busy week actually, with my fourth infusion on the Thursday too. I’m hoping to see some improvement in the blood test results this time, to reflect how I feel, but once again  I wonder how will we know if it’s the Orencia or Prednisolone?

A conversation with my amazingly fantastic friend, at the zoo yesterday, got me wondering what animal I’d like to be / come back as in the ‘next life’ …it would have to be something fast and energetic, to make up for the lack of these qualities now – so maybe a little monkey that swings through the trees, or a sea lion, which look so carefree gliding through the water!

Any ideas?

L

Ps. Ketoprofen has now been added to the Treatment Section; next – Prednisolone!

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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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