"If I can’t have what I want, let me want what I have"

I've spent an hour in the hospital this morning with some of the various medical people involved in my treatment. I have found out that it is always better to go well prepared to such appointments and then you get the answers you really want and not some general token response. That’s what I did today.

This morning I gave my RA Nurse the run around (she'll be cursing the internet) but as it turned out I was right on this occasion. You can't get pre-filled 17.5mg mtx syringes (why do I feel like I’m the one sorting out my own problems?)

I haven’t seen my nurse for quite some time and I’d forgotten how lovely and kind and down to earth she is. I can explain to her how I'm 'really doing' and don't feel like I'm letting anyone down by being completely honest. I don't feel like her time with me is rushed (although I know it is) but somehow she seems more in-tune with what IS going on with me and my RA and my family. And she does what she says she will do and that’s fairly uncommon these days!

My partner came along with me too (he injects my mtx) and I think it has helped him to understand what my RA is doing now, how it’s affecting me and how to help me feel a bit better. Usually I’m on my own when discussing my RA and I think it’s good for him to find out things about it from others than just relying on me to relay info, which I often forget anyway!

I saw a different consultant to normal though last month and it threw me - I went from being fairly organised to having to answer questions that my other consultant would know about already. I think that has had a bearing on the direction of my treatment and how I've been feeling. This new doctor might have read my files but she hasn't seen me at my worst and doesn’t really ‘know’ my history. However, I’m sure as the years go by I’ll have many, many a consultant so it falls to me as a patient to highlight issues and factors that I feel are being overlooked by my doctors. Sometimes though, it really feels like medical professionals say silly things and ask daft questions just to try and catch you out. My physio always says ‘you’re still on Sulfasalazine, right?’. Er, nope! I know they see thousands of patients but it’d be nice if they got it right once in a while…there is only one me after all.

After seeing the Rheumy this time I've been left feeling a little bit in the dark about my RA. I know that I am struggling and that I'm flaring at the moment and have been for a few weeks now. I know because I hurt, I can't sleep, I'm hot and bothered, I'm swollen up, can't eat and I'm grumpy. And I'm worried. But having an ESR of only 11 (even though it was never high when I was very ill) they don’t seem that troubled. Today though I had my flare confirmed by both my RA nurse and my Physio which has put my mind at rest a little, I wasn't just imagining it after all!

What’s most frustrating about all of this, is that while all this to-ing and fro-ing is going on between doctors and nurses and gp's and physio's, I’m the one being left to struggle on with things. It really feels that in order for me to take control of my RA I’ve got to take control of my visits and ultimately my treatment. I thought it was all going to be so simple but in fact it’s so complicated, I'm almost trying to foresee what the outcome of my appointments will be which, is helpful in a way but sometimes it's aftrwards that questions begin to spring to mind!

So now after causing problems this morning, I have had my increase to 20mg mtx confirmed (and not 17.5mg as previously suggested) and just have to wait until I can start that and the Celebrex. Oh and continue to take a bucket load of paracetamol to keep on top of my flare until the increase kicks in...

...I swear if you were to pick me up and give me a shake I'd rattle!

7 Replies

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  • Oh Jo, I just know exactly where your coming from and its so frustrating. I too had to increase the MTX because my dose wasn't available, and the change in consultant just drives me round the bend, I don't do to bad now as most of them know me but if my regular one is away and a new one sits in I know straight away what lies ahead in that room I just want to scream before I even get in there.

    I'm glad you took your partner in with you I would recommend that to anyone, its a better way of them getting a clearer view of things they seem to listen to the experts.

    I wouldn't get to worried about your ESR either as mine never goes that high at the start of a flare but suddenly jumps up. At the end of the day its how you feel and that's what you have to get over to them. Also if you have a regular Rheumy that you like you can always ask to see them again I know I can at my hospital I've had mine for 12yrs now so he knows me inside out (literally!) which is a great comfort for me as he knows everything about me.

    Your not causing trouble they are there to help you.

    And remember they only now what you tell them so tell them everything your the one in pain.

    mand xx

  • I have taken arcoxia etorcoxib, as you can see from the name it is a relation, celecoxib, in pharamcy the key is the name end in this case coxib, (work in hosp pharamcy lol), less likely to cause gi problems, but increased risk of stroke, pays your money, it is my choice, my gp is brill, calls me alsin, his wife alison is physio assit same hosp, discuss drugs like gown ups, unlike my rheum nurse and consultant!!. yes your are right re methotrexate syringe doses, silly mare was thinking of tabs i suspect, as they come in 2.5mg, had bad time with those little yellow tabs, injection deemed safer!!??, I however declined the kind offer of the injection, metho suits some people in either form but not me, nor sulfasalazine

  • I did query it at the time but they were all convinced it came in that dose?! As it happens no letter from Rheumy to GP so had wasted trip out in the p***ing rain this morning. Grrr.

  • I Think they have poor drug knowledge, sometimes, i sound a little hard to say that about nurses but often it can sadly be true, but there are soom good nurses out there, if your joints are bad such an effort to go as well, my rheum huh, fallen out with ther sec have had to chase gp letters twice o lol x

  • Alison, I did query it with the consultant too, who did think I was on pills but when I said I was on methoject she just said it wasn't a problem to go up to 17mg. I feel happier that I double-checked and probably will find an increase to 20mg more beneficial anyway! Letters to GP have gone missing as I found out today after a wasted trip in the rain!

  • oh dear letters missing noe good, hope the 20mg metojectdose helps!

    ineffeicency at every level at more than one hospital x

  • I've just realised I repeated myself, apologies...It was NOT a very good day all round!! Things are going in the right direction even if it's slowly and it's the weekend which means I can rest up and try to get over this flare :)

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