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Posts Tagged ‘Anaemia’

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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I didn’t want to waffle on too much about myself again, but since we made some progress at the GPs yesterday I thought I should give an update.  The GP wasn’t surprised about the way I’d been treated at the local hospital and even admitted that he had seen some horrendous treatment there himself. He fully supported my decision to discharge myself and said we needed a plan that would help me to feel better without going back. 

First off, he would arrange for an outpatient CT Scan just to make sure I have no blood clot, although he agreed with me that my symptoms were more flare related.  As for the anaemia, he feels certain that it is Anaemia of Chronic Disease and that we can afford just to keep an eye on it for now. If my haemoglobin does drop any lower than it’s current 8.0, I am to mention to it to my rheumatologist and get the transfusion with him.

Finally, since the main thing that is bothering me right now is pain, we discussed my painkillers.  I currently take Tramadol and have refused anything stronger in the past because I worry about masking my symptoms too much and also about becoming reliant on/resistant to pain medication.  I don’t even take the full dose that I am allowed, even with the amount of pain I’ve got at the moment.  Anyway, my GP made me agree to take the full dose every day this week to see if it did take the edge off and, if not, said he would prescribe something stronger when I see him in a week’s time.  He also prescribed Naproxen, which is something I took way back in the early days of my diagnoses and never bothered with since; but I’m willing to give anything a go right now, even if just for a little more relief and mobility.

So there we are, it felt like progress to me and I at least have an appointment with him again next week (without having to phone days in a row).  It should be enough to tide me over until my next infusion on the 25th August, when I will see my rheumy again – he’s currently on holiday.  I’ve put my Prednisolone up again, which takes me back to the worries I had previously, but I need relief.

My next ‘worry’ is that we are going to Oxford for the weekend later today, as our friends are getting married tomorrow.  It seems crazy in a way to even contemplate it, but I guess it’s just one of those things you have to try and get through as best you can; plus, I’m really looking forward to it! I’ve never been to Oxford before, so that in itself will be nice. The Ceremony is quite early in the morning and then they are having a campsite barbeque reception – which will be a new experience too! Hopefully, I’ll be able to fit in some rests back at the hotel and will just have to pace myself the rest of the time, but at least I know I will be looked after.

Of course I wish I didn’t have all this to worry about, but you have to make the most of what you’ve got and, besides, I hate having to put my life on hold.  So, here’s to the happy couple – and to enjoying our lives despite this horrible illness, just doing so at our own pace.

L

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I should start by saying that I’m writing this is in retrospect due to events.

I’d booked an appointment to see my GP this morning (Monday) so that I could inform him how things were going with my new treatment, test results etc and hoping to discuss my painkillers. I was disappointed to find it was a Locum doctor but filled her in on the situation as best I could.  She was very concerned and, listening to my chest, told me I looked awful and that she was worried that my anaemia and tachycardia were putting a strain on my heart; that she was sending me to the local hospital for a blood transfusion.

Now I’m always a bit hesitant to go to different hospitals to the one I’m treated at the majority of the time – the one where my rheumatology team and all my notes are based. In my experience, doctors that don’t know me tend to look at my results and ‘freak out’ a bit. But I’d been told I would be out by the evening and figured that treating the anaemia might make me feel a bit better than I was at least, so off we went.

We went straight to the Emergency Assessmet Unit, where they were expecting me, and a nurse took my obs, some blood and fitted a canula (into what seems to be my only remaining vein to comply!)  After a short wait, I was seen by a doctor who wanted to know what had led up to me being there, so I tried to explain as best I could about starting my new treatment, my worries about anaemia and methotrexate and the rough time I’d had over the weekend, all the time thinking they were looking into the cause of the anaemia.  So you can imagine my surprise when the doctor said that she thought I had a blood clot on my lung!

I was treated for a Pulmonary Embolism when I was 16, but although I’d mentioned some minor chest pain, this was more akin to what I’d experienced in January with Pericarditis and nowhere near as severe as the pain I’d had as a sixteen year old – not to mention that I was barely conscious at that time.  But I understood that they needed to rule this out for themselves and so agreed to the tests and CT scan, even though it meant another stay in hospital. After all, it is better to be safe than sorry, and I was still hoping that it would lead to some relief.

I couldn’t have been more wrong!

L

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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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Just a quick note for now.  The week has soon passed and it’s already time to take Methotrexate again.  The nausea has eased a little this past week but I still get pain after eating and people are noticing that I am losing weight again, despite the Prednisolone.  The thing that bothers me most is that I’ve lost the little bit of colour I seemed to have in my face after starting Orencia, it’s disheartening seeing that grey pallor in the mirror every morning – I’m starting to look almost as bad as I feel.

I asked for them to check my Folate levels on behalf of my GP last week, then forgot to check the results with them. I’m guessing they would have said if the level was too low though; need to be careful because of the Megaloblastic Anaemia I was diagnosed with just prior to starting Methotrexate.

Got to plod on with it…

L

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My GP wanted to see me to discuss a few things and so I went for an appointment this morning; I wasn’t expecting it to go quite as it did.  Firstly, he said he was very concerned about my latest blood test results and said he’d never seen anything like it before (it is only a small practice I suppose!).  He wanted to make sure that my consultant was aware of how things were getting and I assured him that he was and that we were waiting for a date to start the Orencia.  He then asked me if I felt well enough to be at home or would I feel better being admitted into hospital; well obviously I didn’t say the latter since I don’t see what good being in hospital would do right now.

So after getting that out of the way it was onto the folate deficiency.  He doesn’t agree with starting the Methotrexate just now for the reasons I mentioned before, but obviously says it is up to my rheumy.  Hopefully, by the time it comes to that my blood tests will have improved anyway.  What he was most concerned about however is the cause of the folate deficiency since my diet is full of fresh vegetables, which are the main source of folate.  He asked the usual questions about any stomach or ‘toileting’ problems (to put it nicely), which I do usually get alongside my Still’s flares and had just been putting up with.  In fact, in the past I have suffered from malabsorption and been tested for Crohns Disease, but each time the results came back as inconclusive; all of which I told him.  So I guess we have been here before.

His conclusion was to hold off on the Crohns testing for now and instead test for Coeliac Disease, which just involves taking another vial of blood at my regular blood test next week; in the meantime, the Anaemia should improve with the Folic Acid I started on Friday.

Finally, he’s arranging for the surgeons to see me about opening up these chronic abscesses as he feels that is the only way to get rid of them.  Another hospital visit to add to the list but at least we may be getting somewhere on the road to the recovery.

L

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Feeling a little disappointed today since I was supposed to be meeting my friend and her four other bridesmaids for our dress fittings in Manchester, but the steroid injections haven’t kicked in enough to allow me to travel/stand for long/lift my arms so I am giving it a miss.  It’s a shame because I don’t see enough of her as it is, now that she lives in London, and I was looking forward to a catch up. These things can’t be helped though.

In other news, my GP phoned me today to say that my last blood test results were getting worse and that I was now lacking in Folate too, which he feels is playing a factor in my Anaemia  (Hb of 9.7 for anyone interested in figures).  I have been told in the past that I have a ‘different’ type of anaemia since my Ferritin levels are usually quite high; that my red blood cells are larger than normal and abnormally shaped, meaning they don’t transport efficiently… but nobody has ever put a name to it or done anything about it. 

Now my new GP decided to look into things straight away and this is what he has come up with – Megaloblastic Anaemia.  We had a chat and he arranged for me to pick up a prescription for Folic Acid this afternoon, which should help.  The only thing I am worried about is that I am due to start Methotrexate alongside the Orencia infusions and this is a recognised folate depleter; in the past I had to take it with daily Folic Acid anway.  Whether this will effect the decision to start the MTX I don’t know… I didn’t have a good experience with it first time round and I still have my concerns now.

I guess only time will tell.

L

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