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s.l.e and confused

Posted , 7 users are following.

lisa08381
lisa08381

I was recently told by my g.p that I have tested positive for lupus and gave me some information and sent me on my way I read the notes she gave me and was terrified. I don't know what to do next sad

3 likes, 29 replies

29 Replies

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  • 1_hand_works
    1_hand_works lisa08381

    Posted

    Hi Lisa, my GP was excellent, got the blood tests done - I am anti Ro positive - referrred me to Rheumatology, who said yes, but that doesn't necessarily mean I have lupus! Despite having a family history of it! I have had Xrays, blood tests, lung functions tests and due an ultrasound on my hands and feet. So I still don't really know anymore until I see them again. I panicked like mad, given what has happened in my family, but really, it was pointless worrying about something you have no control of. I have given up worrying about if it will get worse, it is really hard to do that, but what ever happens, happens. I don't think anyone has a clue what to do next, when I see the consultant next, I will see what they are planning on doing, but every patient is different, no one reacts the same to the same drug, so yeah, try not to think too hard about it. I have changed my diet though just in case there is anything I could control. However yoga and pilates haven't help - my joints couldn't take it. Yours might though. Good luck!

     

  • lisa08381
    lisa08381

    Posted

    Thanks guys for your advice smile

  • susan33651
    susan33651 lisa08381

    Posted

    My posts keep being deleted as they contain information deemed unsuitable! Sorry, I was hoping to tell you about natural remedies and Lupus.
  • lisa08381
    lisa08381

    Posted

    Well I've been to rheumatology and had a load of bloods done he also said he won't diagnose me until he has more proof and I'm being referred to dermatology and cardiology so watch this space I feel like there is no end to this sad how long did you have to wait for test results please guys?? smile
  • Salcombe_Ali
    Salcombe_Ali lisa08381

    Posted

    Hi Lisa,

    I too was resently told I have either lupus or connective tissue disease and I also have been thrown into a complete whirligig of emotions. I was told I needed an op on my foot to clear the inflammation and as that referral would take about 12 weeks, I might as well wait about 10 weeks for my tests and then go back to the Rheumi after that. That's 3 months of ' no bloody idea what's going on' ! 

    I feel you should demand to see a Rheumatologist asap. Your GP can't leave you in limbo, it's just not fair or right. Good luck.

    Ali

    • Salcombe_Ali
      Salcombe_Ali

      Posted

      Just saw your last post so ignore my rant. Keep us posted!

      Ali

  • lisa08381
    lisa08381

    Posted

    Absolutely furious!! I rang rheumatology today as it's been 3 weeks since I had bloods done and what a surprise they can't tell me my results because the secatary is still on holiday and they said if there was any thing they would of let me know arghhhhh I just don't know what to do feel I'm banging my head on a brick wall still in pain and the only pain relief he gave me was a low dose Co Codamol sad
    • 1_hand_works
      1_hand_works lisa08381

      Posted

      Hi. There's a shock eh? It's always "you have to wait for your 3 month clinic appt - if there was anything seriously wrong we would tell you". I have a good rheumatology nurse support service however, they tried to get me in quicker, but no emergency appts available. Am always told to go to A&E if it is bad, but don't fancy sitting in A&E all day for them to tell me to go home and wait for blood results which could take weeks! Sometimes the blood results do take longer than normal, so don't despair. If your GP will let you have naproxen, try that. I take it - big tablet and it's twice a day, but it does help my hands and feet with the swelling and pain. I also take cetirizine for my rash and cocodamol, but it is a high dose and does not help bowels!!! Try paracetamol in between when it is bad, despite what they said in the press, it does help. I am sure I rattle when I move with all the pills I take! Like I have said in previous posts, I have given up worrying, not worth it. Nothing is ever easy with this disease, The good thing about bloods being ok is that at least you know your kidneys, heart and liver are ok, which is important in the early stages. Chin up, mate.
    • Salcombe_Ali
      Salcombe_Ali 1_hand_works

      Posted

      I have a question about Naproxen. Does it upset your stomach by any chance? I have trouble with ibuprofen and have now been given Naproxen. ???????
    • lisa08381
      lisa08381 1_hand_works

      Posted

      Thanks I've booked to see the docs this week to see if he can give me stronger tabs and maybe shed some light on what's going on its so frustrating and to be honest I haven't the patience for all this haha....but like you've said there's no point worrying it just makes you feel worse roll on Thursday smile
    • 1_hand_works
      1_hand_works Salcombe_Ali

      Posted

      Yes it does, I make sure that I have cereal / porridge first thing when I take it and the have another one with my lunch or tea. The GP can give you something as well for more protection of your stomach wall, but I just make sure I eat with it
    • susan33651
      susan33651 Salcombe_Ali

      Posted

      Hi,

      All NSAIDs can affect the stomach causing irritation, nausea, vomiting, ulceration etc. Each person reacts (or not) differently to each variety of these drugs. Personally I can't take Diclofenac as it makes me wheezy in addition to causing gastric irritation but I'm fine with Ibuprofen. One or other of these drugs will work well without side effects for most people, it's just a case of which one!

      Naproxen incidentally is the drug of choice in my Hospital Trust as it is not only cost effective but has significantly fewer associated long-term problems than Diclofenac and less chance of causing an allergic reaction than Ibuprofen.

      If you have concerns then take it with someting like Ranitidine which you can get from the chemist or ask your GP to prescribe somethng similar in the antacid/proton pump inhibitor range of drugs - these will negate any of the known side effects such as gastric irritation.

      Good luck.

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