Starting to get a bit fed up now!

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)

8 Replies

  • Hi,

    Sorry about all your trouble and illnesses. Was it one doctor who diagnosed all that?

    Do you have an APS-Specialist?

    Best wishes from Kerstin in Stockholm

  • Hi kirsten,

    The haemotologist diagnosed the Hughes then after me complaining how I've never felt right for years I was referred to a rheumatologist who diagnosed everything, I haven't got an aps specialist I did get in touch with the secretary of one close to where I live and her general attitude put me off pursuing any further contact with them

  • It sounds like you've had a baptism of fire!

    I can sympathise with your pain relief problems, I can't use any NSAIDs and everything else seems to make me itch uncontrollably. I would recommend you speak to your GP about a referral to your local pain clinic. You might find your GP can try you on something like amytriptaline.

    A pain clinic might try you on something like naproxen, pregabalin or gabapentin. There are lots of other options out there, don't give up hope! It will all depend on what works with your other medication.

    There are other options instead of hydroxychloroquine too. My rheumatologist is switching my meds next time I see her.

    Good luck!

  • I thought after 6 months I'd see some kind of improvement and there's not a thing happening I'm still in the same pain still got very little energy and this has been ongoing now for the last 2 months so I really don't think they are working but I will speak to my gp regarding a pain clinic thank you jojo

  • Hi, It is obvious you need an APS-Specialist. You must have a doctor who you can speak to and who understands.

    Sorry about that secretary for that APS-specialist near your home. I live in Sweden and I am not sure how a Rheumatologist can refer you to an APS-Specialst or if you can get an appointment by yourself. You must get your blood tests with you.

    Anyhow I am very glad that you have an APS-specialist near to where you live. There are so few doctors that understand APS well. I really hope you can see that doctor soon.

    Please tell us how it goes!


  • Right don't be put off by a snooty receptionist, she is not the Dr. You need to see the APS specialist as only he/ she can coordinate your care and know what is the right path. You have the added problem of RAvwhich will need some more specialist meds and even some of the more newer drugs that have come out.

    Go back and ask for that referral and stand your ground till you get it.

  • Thanks APsnotFab I'll make an appointment to see the doctor as soon as I can

  • So sorry to hear about all the illnesses you've been afflicted with. Hope you get the help you need from specialists who actually know about autoimmune diseases and can give you the support you need. I have a very good idea of what you're going through right now, as I suffer from the exact same autoimmune diseases.

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