Confused

[clare333]

I have been diagnosed with lupus for about a month now, been put on methotrexate and hydrocloraquine apologies for the spelling, but last round of bloods esr and cpr came back normal does this mean my lupus isn't active, so why do I still ache all over, also since been diagnosed have had singles and kidney infection

[Paul_Howard Partner LUPUS UK]

Hi clare333,

Do you know whether your antibody test results were positive on the last round? All of the results can fluctuate over time, but hopefully your esr and cpr will return to normal. It is common to experience some aches and fatigue even when the lupus isn't active and it is well controlled unfortunately.

Would you like me to send you some more information about lupus? We have a free pack that I could post you. Just send me a private message or email [e-mail] with your name and address.

[clare333 in reply to Paul_Howard]

Hi my ana was positive when it was last done it only and my last bloods normal but I feel awful all the time

[Terrier_Lady]

Hi sorry to hear that you have Lupus. It is possible to have Lupus and have negative blood tests including ANA. I had trouble for years but was not diagnosed until the last couple years because while my blood tests were abnormal they weren't showing a positive ANA. But my last 2 rheumatologist diagnosed me as active lupus because I had all of the symptoms showing it is active. I hope this helps. And I hope you start feeling better.

[tazzydevil]

Hi.

I too have just started mtx as hydroxy seems to do nothing.

It takes a while to kick in. Have you experienced many side effects. I have only had one dose so far and feel quite sick.

[clare333 in reply to tazzydevil]

I have experienced the sick feeling in morning esp day after I take my methotrexate xx

[Whathappned]

Hi

I have been on these drugs for some time now. Not sure how long but I think nearly two years. I have found things have slowly improved and the body aches especially the ones I got in my rib cage which really got me down and are only occasional now. I still have sore knees, ankles and leg muscles on and off but it all seems much more bareable. It's been a lot about getting to know my body and starting off slowly. Small increases in activity although I occasionally don't listen and do too much then I suffer again!

They do seem to affect the stomach but that settles aswell.

Hopefully your bloods normalising means the drugs are doing their job and controlling the inflammation caused. It has helped with mine and that's what I gather was the aim, combined with helping your symptoms

[Fighting]

When the medication is working, the blood work comes back normal. Sometimes there is still some aching. The physicians try to give as little of the medications as possible. They all come with side effects.

I was under the impression that Shingles is unrelated to Lupus. It comes from the same virus as chicken pox. We can get sick with other illnesses. I had shingles at a time when I was very stressed. I don't know if that fits for you. I now attempt to distress as much as I can. I don't know if that helps Clare333.

[clare333]

Thanku, my shingles was caused by my body being so run down I think, since being diagnosed with lupus it just been one problem after another x