Rheumy appointment

I went to my first rheumy appointment today. I saw such a nice doctor who explained loads and asked lots of questions. She's not 100% sure it's Lupus although it's 'Lupus-like'. Not sure I understand what that means, but I don't feel I need a name for what's wrong as long as they're looking after me. She's started me on hydroxychloriquine so see how I get on and I have to go back in 3 months. I had a load of blood tests and am feeling quite positive. After years of being ignored I feel that someone cares how I feel. I'm praying that the hydroxychloriquine helps me to feel a bit less exhausted, then I might feel able to do some of the things I've had to put to one side while I feel so knackered.

14 Replies

  • Hi chicklette, so glad you are finally getting some help from a specialist, its a horrible feeling when you have a condition that you just dont know what its called, im on hydroxy also, fist few week you still feel the same but hang in there as the drug builds up and you should start to feel better, have a lovely day hun xx

  • Thank you. Just hoping the hudroxy does work for me as the rheumy said it doesn't always work... But my sister's been on hydroxy for about 5 years and is so much more energetic than me, so I'm really hopeful. :-)

  • Hi there, I have been on Hyrdroxy for just over a month now and I feel it is actually beginning to do something!! Admittedly the intense pain is still just as intense, but I feel so invigorated and energetic again!! Something I haven't felt for a long time! I have spring cleaned the house from top to bottom, taken long strolls across the downs with the dogs and even considered I may have enough energy to go back to Zumba!!!! Unbelieveable, when up until now, I have had to have help even climbing a flight of stairs. I truly hope you find it helps you too and you can start to get your life back on track. There definitely seems to be light at the end of the tunnel, we just have to learn to pace ourselves! :-) Good luck xx

  • Thank you Sparkle247 you have really cheered me up! The thought of being able to do Zumba is amazing. Right now I want the energy to go back to the hard yoga classes I used to love, to ride my bike and to do some decorating! You have made me feel this might be possible! So praying and praying that the hydroxy works for me :-)

  • In my eyes a couple of good days a week is a huge, huge bonus!! I can cope with the all the bad ones as long as I know I can have some respite and feel energetic again! I have to say that also I recently purchased a TENS machine, all singing , all dancing one with heat, massage etc, and I find that hugely beneficial to cope with the pain. Doesn't always work, but it is like having your own personal masseuse whenever you feel you need one!! :-)

    Fingers crossed for you xx

  • Hi Glad you have somebody who is willing to listen i am on hydroxy and it did take a while to work but hopefully you will get a bit of relief,

    Take care xx

  • Thank you. Am hoping I'll be one of the lucky ones who it works for!

  • Really great that you feel you have a consultant that is supportive. Hope it's onward and upwards for you now!

  • Thank you :-)

  • Good to hear.....hope all goes well with the treatment x

  • Thank you :-)

  • Another hydroxy taker here :) It helped me Chicklette...eased the fatigue and reduced joint pain....I've been glad of it, wish you well xxx

  • Oh I'm getting all enthusiastic and hopeful now! Thank you :-)

  • Another hydroxy convert here chicklette, just diagnosed in January, started on hydroxy in February - did take a wee while to get in my system and have to take lanaprozal too, to stop heartburn and feeling sick with it but I am now feeling more energetic than ever - word of caution tho, don't try and do too much, I was so pleased with myself feeling better that I went on a big shopping spree then spent two days in bed recovering! My hubby trying to convince me I am allergic to shopping now, lol. Good luck and take care ;)

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