[jancm]

I was diagnosed with Lupus about four years ago, after a number of years with many different ailmants. I'm currently on prednisolone, plaquenil, azathioprine and asprin. I have been feeling awful lately, painful joints, exhaustion, headaches, night sweats and just feeling really ucky. Everytime I have my bloods checked, my ESR comes back normal. I thought the ESR was an indication of disease activity? So if mine's normal, what is causing all the problems. I feel sometimes as if maybe this is all in my head and that there's isn't anything actually wrong with me!! I've now developed stomach problems, and have just had a scan on my abdomen, and I am waiting for the results. Can Lupus cause stomach problems? Even though I've had this for about four years, I am finding it increasingly difficult to cope with. Thanks

 

[Maia]

ESR does not **have** to be elevated to be having pain and other problems from lupus. It does not always reflect lupus activity - there are a number of us here that always have normal ESR but most definitely still have lupus. My rheumy says that it just means you don't have inflammation with a capital "I" . The ESR is affected by many different things too - like blood cell size and other blood factors can affect it causing it to be artificially low or artificially high.

Your medications can cause stomach problems, as can lupus itself. If they are really bothersome, you may need to get a GI consult and get scoped (upper and/or lower GI). Or just do a trial of drugs that protect the tummy (like Prilosec or Prevacid, etc.). If you get scoped, they'll know for sure if you have a stomach ulcer, and will likely take small biopsies to see if your autoimmune disease is affecting your stomach/intestines.

Good luck to you...

 

[mumsy613]

Sorry you are feeling so awful.

One reason that so many of us have normal sed rates is that any amount of steroid treatment can prevent sed rate from rising. I notice you are taking prednisilone. It is amazing to me how many doctors don't know that.

Hope you are feeling better soon.

Fran

 

[raggedyann1]

Jan,

All my early years with lupus my esr was always normal even before the steroids began. All the years I was on prednisone in the early to mid 1990's my esr was usually a 3. This last 5 years it has sometimes come back positive but most of the time it is between 13 and 18.

What dose of prednisolone are you on? What about the aza? Have you been on the aza for awhile now? I would hope your doctors would raise your steroids or look at changing from aza to a different immune supressing medication.

Take care,
karen

 

[LoopyLoo]

Hi Jan,

My ESR has always been normal or just slightly raised even during my worst pain. Thankfully my doctor realises that he can't go by my bloods as to how I'm feeling.

I try and stay away from him as much as possible :hehe: but if I roll up then he know things aren't good.

Taking all those meds is bound to have an affect on your tum - as Maia said, you can get meds to protect the tum if necessary. I always take pro-biotics in the morning before I take anything else.

Take care,

Pam xxx

 

[goldensgirl]

Hi there
My ESR is always normal too. Also, I have not yet had a positive ANA. Just saw my Rheumy, she still says it's Lupus and is basing this on other criteria, and some other abnormalities with white blood cells, she said.
I have been in terrible shape since fall too, and with labs coming back normal and me getting worse and worse. I can identify with your frustration, I started to feel like maybe it was in my head. However, my Rheumy is a brilliant woman and I know she woudln't give me Plaquenil, etc without a reason, so it helps me to think of that.

 

[jancm]

Thanks for your reply (and all the others), it's good to know there are people out there that care enough to reply. I'm on 150mg of AZA, I've been on this for about two years, maybe longer. I'm seeing my rheumatologist today, so I will ask whether I can try something else. They don't seem to be very clued up on Lupus, and no matter how awful I'm feeling, I just get "your bloods are fine". It's very frustrating. Thanks again to everyone