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I've been to visit my drug lord.... the rhuematologist ! lol

Posted , 11 users are following.

FlipDover_Aust
FlipDover_Aust

Hey everyone!

I went to my rhuematologist on Monday for my 3 monthly appointment. I've been feeling a bit poorly (more than usual that is!) so it was a timely visit. It turns out my CRP is at it's highest level ever, so I feel somewhat justified in feeling like crap!

As background: I'm currently on 5mg Pred, 20mg MTX (followed by folic acid), Lryica, antidepressants and BP medication. I've also been taking a fair bit of Panadine Extra (codiene 15mg and paracetomol 500mg). It is believed I have myofacial pain syndrome, and possibly fybromyalgia as well as PMR).

The rhuemy is concerned I'm not responding to pred like I should be -  other than the first week or two on pred I've never felt 'well' - and the MTX has worked as well as it can on me - I've dropped to 5mg from 20mg last Xmas!) so he's keen to try a new drug regime on me.

He seems to think that Tocilzumab, usually only used to treat RA, might help PMR, however, it is a regulated drug here in Australia, worth roughly $10k a year, so unless I'm diagnosed as having RA I can't get it. I also have to have tried the standard treatment for RA (Plaquenil) for at least 3 months. So as of yesterday I've increased my pred to 7 1/2mg and started on Plaquenil.

Day two and I feel dreadful. I'm teary, disorientated and have a funny tummy (that's putting it mildly!). I'm not allowed in direct sunlight, and have to wear sunglasses when I go outside, as the Plaquenil can damage the eyes. I wonder what else these drugs actually do to us? 

I really don't expect the Plaquenil to actually make me feel better so I wonder why the hell I have to take it???

 

1 like, 18 replies

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  • Susanne_M_UK
    Susanne_M_UK FlipDover_Aust

    Posted

    I can't really add anything useful. I do believe that karenjaninaz may be correct about cutting back so drastically on the painkillers.

    Take it easy on yourself, there's so much happening with your meds right now and it's going to be difficult to work out what is causing the side effects.

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