I have been diagnosed with Lupus and have been quite ill.I am on Methotrexate injections(1 x weekly)for at leas 8 month's now.

[Binkey]

I have been told my blood test's are clear and yet I have been very ill.I have lost quite a lot of my hair and my hand's,in parrticular,are very painful.I am also on morphine patches but,I am still having flares.Why?

[Paul_Howard Partner LUPUS UK]

Hi Binkey,

The blood tests don't necessarily always tell the full story.The hair loss could be a symptom of lupus of it can be a side-effect of the methotrexate. It sounds as though you may need your treatment regimen adjusted. Have you spoken with your consultant about how you are struggling? Is there anything else going on in your life that could be contributing to making you feel worse, like stress over something?

[Binkey in reply to Paul_Howard]

Thanks

[Binkey in reply to Paul_Howard]

Thank you.Yes I do have a lot of stress(my sister is in care home and there are problem's).I am due the see my consultant in Febuary but,am seeing my GP this Wednesday.I am afraid the rheumatology clinic here is a nightmare and I have had to be seen by emergency twice.I am hoping my GP will be able ro help,

[Paul_Howard Partner LUPUS UK in reply to Binkey]

Your stress is likely contributing to the flare. Is there anybody that can help out with the problems your sister is having and lighten the load a bit? Have you spoken to PALS at the hospital to let them know you are having trouble with rheumatology? They may be able to improve things for you. Let us know how you get on with the GP.

[Binkey in reply to Paul_Howard]

re:Pals

[Binkey in reply to Paul_Howard]

I have spoken to PALS and there was an actual meeting re:Rhuematology and my having to go to emergency and my own GP,I even had problem's renewing my metgotrexate injection prescription but,I will go into that later as I have to collect my presceription(from the hospital)today.Wish me liuck.

[joannebond360]

Hi Binkey. Sorry to hear that you have been struggling. My bloods never have shown anything that's why my diagnosis took so long! I too was on methotrexate, I went up to 10mg of injections. I was changed to mycophenolate as I was struggling with side effects. The dosage of methotrexate might have to be increased. What dose are you on? I was still flaring on 10mg, flares were milder but still happening. Always loose hair when flaring.

Hugs

Jo x

[Binkey in reply to joannebond360]

I am on methotrexate 50mg/ml 1 x weekly plus morphine patches plus folic acid.Stay well.

[joannebond360 in reply to Binkey]

Wow that's a big dose, it could be the methotrexate itself making you feel ill, it did me. If you feel like it's not working they really need to help you.

Jo x

[mstr]

Hi, I still flare up on methotrexate tablets 20mg weekly although they are not so long lasting. A flare can last from a few hours to days whereas before I didn't know when one ended and another began. Going to ask for mycophenolate too though.