Heya every people's,
After being diagnosed in November 2013 with dvt a string of blood tests later and it turns out I have Hughes, lupus, rheumatoid arthritis and sjorgrens (excuse the spelling if anything is wrong) was started on hydroxychloroquine 400mg per day about 6 months ago along with warfarin and was referred onto what seemed like a really good support team, since then I'm still in pain the last two months has been really bad, the only medication that seems to work is ibuprofen but I don't wanna take that for the risk of stomach bleeds, anything that was promised me regarding home adaptions and the such like has been totally forgot about and ended up on the phone yesterday on a total rant saying while they've forgot about me I'm suffering I did get an apology and then the phone never stopped ringing after that trying to organise everything and give me advice on pain relief - my questions are:
1) if hydroxychloroquine doesn't work what else is there? All its doing for me is letting me have a good night's sleep and that's all
2) is there anywhere you can contact for support that actually do follow up and not forget about you?
3) and what pain relief is good? I know you aren't medical experts but just going off people's experiences - I've been told to take paracetamol long term to build up a resistance to the pain but I am terrified of becoming dependant on pain killers my uncle died because of this and I really don't want to take them unless absolutely necessary, paracetamol doesn't even take away a headache so I don't hold much faith in them taking this pain away, I've tried codeine phosphate, Co dydramol and paracetamol with no effect but I tried diazapam and ibuprofen and they helped but I know I can't take them long term
Thanks in advance
Bev (gateshead UK)