does anyone else find that their hair loss is worse with hydroxychloroquine?

I go to my rheumatologist every 4 months and he asks the same questions. No answers. My pain is getting much worse. I have sort of electric shocks up thru both my groins. my hips don't work, now my left shoulder is doing the same thing, shocks thru it and pain, not just in the shoulder but down in the bicep.

the doctor just says 'ok' come back in four months.

They won't give me better pain killers than paracetemol/co-codemol and diclofenic. Sometimes these work and other times they don't touch the pain.They won't give me anything else.

I feel quite isolated. That the doctors don't actually care/ or maybe don't actually understand the way it feels. Sometimes I feel quite suicidal, that life isn't worth living anymore. Does anyone else feel this? Am I being a complete wimp? I would love to laugh again.

4 Replies

Hi there i know how you feel, i have came away from hospital feeling realy upset and feeling i have not been listened to, i take questions with me now and ask for answers that explain my problem, keep telling them that your pain is not being relieved with what your on and tell them exactly how you feel, if your mood is realy low too that will have an efect on your phycical health too, i have just been prescribed antidepressants for this 5 weeks ago so still waiting to feel an efact as nothing has changed yet, but please dont leave your drs without answers for this will bring on more stress which for me is one of my biggest triigers of pain too... hope this helps... wish you well Mojo


ive been feeling the same gp has just put up my anti depressant to see if that helps. unfotrunatly even the best dr doesnt undrestand unless they have had lupus they cant. i have had this eleven years and i usually cheer up eventually its a lonely place to be. take a vocal friend withyou to appointments if its hard getting answeres.

one other thing my gp eventually refered me to a pain clinic it was a huge help might be woth asking if theres one in your area you could be refered too. they helped get me on the right pain relief and give me some tips for coping emotionally with pain. its not perfect and sometimes still gets out of control but much less so.


We had a consultant rheumatologist who gave a talk at our lupus group meeting recently. She had recently developed lupus herself and said she had not realised before how terrible the pain can be. Other people cannot comprehend what we go through with the unrelenting pain unless we spell it out very graphically.

Perhaps you need a new lupus medication. I have found that since I have been on Mycophenolate Mofetil my pain has improved no end and I don't need painkillers.

Tell the medics that it is awful and you can't stand it!

You are not alone. Be prepared when you next go but if things are too bad ask for an earlier appointment.

Good luck!


I suffer from hair loss and also take Hydroxychloroquine, the Doctor says there isn't a lot that can be done about it, it's yet another Lupus symptom. In the past four months since seeing Rheumatologist Azathioprine has been added to my long list of medication and has helped a little with hair loss, but it's a vicious circle as this messes up my Liver function! It's really frustrating especially when you're a woman, dig your heels in and let them know how much it's getting you down.


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