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Posts Tagged ‘Blood Test Results’

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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I went to see my GP earlier this morning because this neck and back pain has been getting me down and I’ve finally had enough. He examined both my neck and back quite thoroughly, asking to me to try and move this way, that way, forwards and backwards… while he felt the problem areas. Almost immediately he told me that the muscles from my neck down to my lower back have all gone into spasm, probably to protect itself from some other problem.

Finding out what that problem is will be difficult until the spasms ease off and so he has prescribed me a low dose of Diazepam to work as a muscle relaxant. Once I notice some improvement I am to arrange to see him again to reassess the situation; he thinks it could be either common neck pain from a trapped nerve, disc problems or joint damage.  I’m very young to have disc problems or joint damage in my neck, but with the Still’s Disease you never know; I’m hoping it is the common neck pain as that is easiest to treat.

I was slightly worried about taking Diazepam, it is a drug I’ve heard of before and for some reason it has negative connotations to me. But I’ve had two doses so far and although I feel a bit dozy, it’s not too bad and I’m pretty sure I’ve noticed some relief already so will be worth it in the long run.  He also gave me some simple neck exercises that I can try once it does start to loosen up again, to prevent it from seizing up.

I gave him the copy of my recent blood tests and he too is confused by them. My inflammatory markers are all reduced and yet he said it is obvious I am still having joint involvement – swelling around knee and elbow plus the pain in my shoulder and hip. The Tocilizumab’s main mechanism involves ‘mopping up’ excess CRP so my results correspond with that, but something else is obviously still causing this joint pain… unless they’re just slow to catch up.

Time will tell anyway; I feel positive that this is the one and that things are going to start to turn around, even if slowly at first.

L

Ps, To follow on from yesterday; the coldsores haven’t spread any further so I am to continue with the Zovirax and get in touch with him for Aciclovir tablets if it does get any worse.

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