Posted in Uncategorized, tagged Abatacept, Anaemia, Blood Test, Confused.com, Flare, Folate Deficiency, Methotrexate, Orencia, Rheumatologist on July 28, 2011|
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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.
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…
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Posted in Uncategorized, tagged Anaemia, Blood Test, Coeliac Disease, Crohns Disease, Diet, Flare, Folate Deficiency, Folic Acid, GP, Methotrexate, Orencia on June 13, 2011|
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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.
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