I'm under the Rhuemy my worst problem being my Muscles hurt so much,Dr says I have autoimmune disease, my question is my ESR keeps peeking the top range being 99+ and the lowest is about 48, it is never normal.has any one else have this problem.
My Rheumy says I'm in between Rheumatoid Arthritis and Lupus.
Gosh your ESR is high. Mine is usually higher than normal but hasn't gone above 70. I don't know what age you are but my 84 year old mother in law has PMR (I can't spell the full name) and has intense muscle pain in her legs especially and her ESR was in the 100s when diagnosed - but it is usually a condition that affects over 60s and is managed with steroids and mostly goes after a few years.
I think the disease you describe is called Rhupus. What drugs is your rheumy putting you on for this? I found that injectable Methotrexate with Hydroxichloraquine brought my ESR down to 26 for quite a long time (6 months) but unfortunately I was taken off it a few months ago because of polyneuropathy. I think the drugs are very much the same although I believe the biologic drugs for RA aren't appropriate for Lupus.
Many of us have several autoimmune conditions - there is so much overlap and mine seems to span other diseases too but not Lupus. I just hope you have perhaps got both quite mildly? - I think I read that this happens with people who have MS and RA anyhow so its less appalling than having both at their most destructive at least. Tilda x
Tild T - I think it is Lupus, not Rhupus. 
It's a related auto immune disease. My sister has it.
I only suggested Rhupus because you said it was a mix of the two diseases and that's what RA and Lupus combined is known as I think? Tilda x
Well you learn something new every day!
ESR.
Hiya TildaT,
You asked what meds I was taking from my rheumy, I have methotrexate
And Hydroxichloraquine, that's all I am on 25ml injections and two of those others and my ESR doesn't make any difference at all, I'm am now going to have an injection as my antibody's are low and I'm always getting chest infections so have to take antibiotics , so I really don't know what is going on, all I want is for someone to say that you have then I can get on with my life thank you for the help and caring. Jennyt.
Hi TildaT,
My pains are in my upper half My shoulders, Neck, and Arms.
I'm in my early 60 but have had this for a number of years before I went to my Dr's.it seems I have it in my lungs i'm waiting for my next CT scan which will be four months after the first,
Thank you for the information, also hope you have an easer time with your illness.JennyT x
Hi Jenny,
Has anyone suggested Polymyalgia Rheumatica to you? It causes pain in the upper half and raises the ESR. A relative of mine has it but it is well controlled by steroids and pain killers.
All the best of luck.
Hi Fruitycake23,
no one has said anything about that, I can't have any more Steroids as my body seems to keep them in my body. But thank you anyway.Jennyt
That is what I was suggesting as well Fruitycake when I said PMR. If its gone on so long I guess that makes it less likely that its PMR on its own but that could be creating muscle pain and raising ESR so high too perhaps. Shame about steroids - I don't do well on these either. Tilda x
Rising ESR levels
Swelling and pain without raised crp or esr
ESR, MTX AND PAIN
ESR
Update...here we go again
