Lupus: My diagnosis came early november and also... - LUPUS UK

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Lupus

Timothy42 profile image
6 Replies

My diagnosis came early november and also have had bladder cancer3x , many wrists have hurt last couple nights,,, sharp pains,,, the fatigue has super glued me in bed or chair,,,,will it always be like this??every case is diffrent I know,,,42male

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Timothy42 profile image
Timothy42
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6 Replies
Spara01 profile image
Spara01

I had similar symptoms when I was diagnosed 2 years ago (but without the cancer). I had several months of being restricted in movement by pains in my wrists, arms lower legs and feet before the medication I was given took full effect. Now I can move again although the fatigue is always with me and I am restricted to how far I can walk.. My meds are methotrexate and hydroxychloroquine although they are tailored to the individual, of course. So yes, it wil improve but the meds take 2 - 3 months to take effect. We are also members of an exclusive club because only 10% of Lupus sufferers are men!

Author_ink profile image
Author_ink

I've had lupus for a year now. My flare ups have been challenging. I had a major flare up that lasted 2 weeks. Just got better yesterday. Severe wrist and back pain. And a migraine that wouldn't go away. I was severely nauseated. I have a 5 year old with Autism. I'm also a single mom. This disease is extra hard for me. My daughter who is 24 lives with me to help me. I hate this disease. I stay strong but I would be lieing if I wasn't scared of this disease attacking my organs. Haven't got to that stage yet. Thank God!!!

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Timothy42,

Have you been started on any treatment for your lupus? This can often take a few months before you start to feel the full benefit, so hopefully you will notice an improvement in your symptoms soon.

If you would like more information about lupus, we have a free pack that you can download or request at lupusuk.org.uk/contact-us/

Purpletop profile image
Purpletop

3 times cancer!! That's awful. So stressful, I'm sure, no wonder the lupus symptoms worsened.

They will settle to a large extent once the treatment kicks in, though. Steroids act fast, hydroxyxloroquine takes at least 6 weeks to have effect and other immunosuppressants about the same to show a modicum of improvement but often longer till you see the full benefit.

All the best.

Timothy42 profile image
Timothy42

Just had blood draw today,,,i have been on hydroxychloroquine 200 mg per day,starting my steroid pack tomorrow ,i have bladder checked again in April.can flares stay away or has anyone experienced that flares disapear for long periods?.I will try to adjust and find rt chemistry for better days,

Eddie66 profile image
Eddie66 in reply to Timothy42

For me the 200mg daily dose of hydroxychloroquine has worked well in keeping flares away for long periods. Once a flare has been put down I find my fatigue reduces significantly. I often think of my lupus as "the genie that needs to be put back in the bottle" best wishes Eddie

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