Lupus pain and no treatment : Hi I’m back again, I... - LUPUS UK


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Lupus pain and no treatment


Hi I’m back again,

I was started on methotrexate end of April dose of 15mg had stop three weeks ago due to low white cell count so in reality I only managed to take 5 weeks worth of doses.

I called my rheumy nurse to inform them of my bloods being low and she said it’s most unlikely for me to go back on it.

I have tired azathiopine too which caused the same problem and hydroxoclorquine which triggered migraines.

I went to my gp on Friday with sore throat, swollen glands and stuffy nose I was prescribed cepalaxin.

I explained to my gp about my worsening joint and muscle pains due to my lupus and fibromyalgia and she said it’s because I haven’t been able to tolerate any treatments for both my conditions and there is nothing that can be done.i feel it’s my fault that nothing is working for me.

Sorry for the long post but I’m tired, exhausted and in pain all the time. I’m 25 and can’t be living like this and taking time off work every few months :( anyone else gone through periods where nothing has worked for them did you manage to find something?

Apologies for the long post I would appreciate any help

I x

7 Replies

Hi imzi, so sorry to read of your problems with methotrexate!. Maybe when your cell counts recover you might be able to try it again!. It was wrong of your GP to say to you there are no other treatments and blaming you for what has gone wrong!. It isn't your fault , it's what can happen with immunosuppressives!. Have you tried Mycophenolate?. It's a better tolerated drug and can be helpful with the joint pain. I took it for years very successfully so don't lose heart. Hope you feel better soon. X

imzi in reply to misty14

I’ve been told my body is too sensitive to it so I won’t be going back on they said well most likely I won’t be. No I haven’t tried that, oh I really hope rheumy suggest that and it works! I have had lupus for 7 years and have never been on a treatment for my pain for longer than 2 months but now I just can’t tolerate the tiredness and pain! I’m glad it worked for you, thank you for taking the time to reply x

misty14 in reply to imzi

Keep us posted imzi how you get on with Rheumy. There's no way at 25 years old you should be written off!. Good luck and I hope it's soon you can go. X

Hey imzi I have lupus to and am on a cocktail of medication which only dulls the pain . I can’t sleep with it

imzi in reply to biddy75

I’m sorry to hear you aren’t able to sleep and the pain still bothers you, I hope you feel better soon

Hello imzi,

You must be feeling really low - but there certainly are other treatments around. Like misty has suggested, MMF is quite often used, and the new "biological" benlysta has recently been approved. The Lupus Trust website says a bit more about these.

So please do keep persisting with your doctors, and try to see your rheumy soon. x

imzi in reply to whisperit

I will have a look thank you so much, just wish this pain would disappear! Hoping to hear from rheumy this week x

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