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Posts Tagged ‘Rheumy Visit’

So, December flew by and it was infusion time again. I woke up earlier than normal to get to the hospital on time and wasn’t feeling great at all. It took a lot of help and determination to get myself into the car as I was stiff, in pain and as weak as a kitten.

We arrived on the ward and the nurses noticed I was struggling straight away; I don’t even remember them fitting the cannula or taking my blood, but while taking my observations the Sister asked me how long I’d been feeling this way. I told her everything, she asked if I was feeling breathless and I explained that it wasn’t breathlessness exactly but a sense that I might forget to breathe if I didn’t make a conscious effort. I’m sure others have felt this too at times. She was obviously concerned and called my Rheumy straight away.

It wasn’t long after, that he came to see me; he asked if I felt awful in the usual way and I explained mainly as a Still’s flare but that I’d also experienced muscle weakness comparable to when my diagnosis was Dermatomysositis at 14. He examined my joints and said that he could feel the heat from them through my clothes, particularly my elbow and knee, which he injected with cortisone. Since there was no reason not to take Ciclosporin with the Tocilizumab and I’d responded well to it in the past, he decided to take me off Methotrexate and put me back on Ciclosporin at 300mg a day.

He also said he had spoken to a Paediatric Still’s specialist called Dr Helen Foster, who has lots of experience with Tocilizumab and had told him that it is not unusual for there to be an interval between test results and symptoms improving.  So I am still hopeful that this could be the winning combination and if I ever feel as good as my inflammation markers currently are (ESR of 8 and CRP less than 1 – both results the best we have ever seen for me) then I could end up feeling pretty fantastic in the near future. We just have to keep an eye on some of my other blood test results, as my WBC is low at 3.5 and neutrophils at 1.5. I don’t want a repeat of last year when Imuran caused Neutropenia and left me in an isolation room in hospital. Hopefully, this time round it has been the Methotrexate and not the Tocilizumab.

The last thing that we discussed was my recent neck pain and current hip trouble, which is agony. He had barely moved my right hip before I started yelping out in pain. It could be inflammation, or joint damage from the Still’s but he also mentioned something called Avascular Necrosis, which is when the bone tissue dies and can be caused by prolonged use of steroids. It has been fifteen years on Prednisolone without a break for me, plus the joint injections and occassional IV, so he sent me off for xrays of the hips and neck.

I was wheeled down to the xray department, where I struggled getting changed into a gown, getting up from lying on my back after the hip xrays and standing up for the neck ones. It made me realise just how much I have been relying on other people and on minimising what I do. Once we were back on the ward, I had a nap while we waited for the Tocilizumab. The infusion arrived just before 5.00pm and takes an hour to go through, it makes me feel warm but apart from that I have no reaction to the infusion itself. We left the hospital just after 6pm with my next appointment booked for the 2nd February, and knowing that my Rheumy would get in touch in between with my xray results.

So now I’m pooped and have that slightly overwhelmed feeling I get when having to take so much information in from hospital visits. I’ve probably said it before, but it makes things feel so much more real on days like today.

I’ll be good after a sleep,

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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