I really don't know where to start but here goes.... I was diagnosed with sLe by my GP and rhumey 4 years ago I was put on hydroxy and had regular 3/6 months appointments which I was told was normal.
However this is where I am very confused as I was told the hydroxy will help a lot with the pain and the horrendous aching a feeling like I have been beaten up everyday , which I'm sure they did helped some ,but the aching never ever goes just gets less some days/weeks but then can be some weeks really bad like tearful bad,depressed bad , can't go far bad I think you get the drift, then it calms down to just a low grade ache but never ever goes completely. For me my worsed pain is in my thighs ankles and shoulders.
Now that said I had a rhumey appoint in October and he blew me away by saying my last lot of bloods were very good with a week positive so he now doesn't think I have lupus , he straight away said I should come of the hydroxy and take paracetamol for any annoying aches I get and to take things easy , and he said I will do you another blood test in 6 months before I dismiss you.now any other person would be jumping around the room shouting yippee! But I was devastated i didn't expect that and just sat there with my mouth open in shock and said but what about the extreme tiredness the permanent pain with aches the fact that my bloods have always been positive.
He said I need to go back to my GP and start again.
I came home and sobbed like I have never sobbed before it scared my poor husband who is so supportive .
So I did what I was told I stopped the hydroxy and after just 5 days of stopping my ankles swelled up my body screamed with aching and I had to take my emergency stash of naproxen which gave me instant relief.
Since then I have been back to my GP who took bloods and I must say has been brilliant and together have come up with a plan till my next rhumey appoint in March. The bloods still say week positive but what has convinced my GP its lupus is my dsdna is now reading a very high 83 should be in normal range of 0-20.
All this has left me so emotional I feel like the fight has left me and I can't deal with it anymore I have succumb to fact that for the rest of my life I will never be pain free and now I have stopped the hydroxy I feel I have been hung up and left to dry, I would love my rhuemy to just spend one month in my body and see how it feels to deal with this awful condition mentally and emotionally.
Thankyou for reading 😊