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Posts Tagged ‘Folate’

I’ve written about the rollercoaster nature of living with Still’s Disease before and it seems like I’ve taken a seat on the ‘Big One’ once again.  Last night I could barely move because I was in such pain; every joint was throbbing and painful, my muscles tender, chest sore with my heart racing and pounding in my ears, plus I was hot/clammy to touch.  I tried to just sleep but I just hurt too much and ended up getting upset. This had all come completely out of the blue at a time when I was trying to stay optmistic. In the end, I had to take a mild sleeping tablet – sleepless nights are even more unbearable when you’re in too much pain to even toss and turn.

I woke up this morning still in quite a bit of pain, but at least I was able to get out of bed and walk about on my own.  I hope this means that things will get a little bit better from here, or at least no worse; I was worried where they might be heading. My plan right now is to call my GP on Monday and explain to him the turn things have taken. He might take my next bloodtest a bit earlier to make sure things aren’t getting any worse and also to keep an eye on the folate levels, as I’m still convinced that the Methotrexate is playing a part in all this. Secondly, I think I need to reassess my pain killers because, as much as I despise relying on them, I need some relief right now.

We were supposed to be out celebrating a family birthday this evening but looks like I’ll have to give it a miss. *sigh*  But look on the bright side, I get to spend some extra time with Jack Bauer… oh and my boyfriend of course 😉

L

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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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I finally managed to catch up with the posts I missed; I feel a bit of a cheat backdating them but they were things I felt needed to be recorded and it just wasn’t possible to do it at the time.

It’s five days since I took the Methotrexate and my stomach is not happy at all, no wonder I lost so much weight the first time round.  My main worry is that I was already suffering from malabsorption and low folate levels before taking it and that this will just get worse, but I’m sure the doctors will be keeping an eye on things.

Can’t say I’m looking forward to taking the next dose on Wednesday evening though. On a more positive note, I still feel much much better than I was before the Orencia infusion.

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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