uncontrollable sed rate

Hi, if anyone has an input out there, I would so much appreciate it... I am currently on Humira, 6MP, Pentasa, 5mg Prednisone and Entocort for my Crohn's, what we've been able to accomplish with this arsenal of drugs is that my stomach symptoms are much, much better, However.... my sed rate remains out of control. I know that the sed rate is a sign of generalized inflammation, mine is currently running between 70 to 90. My doctors think that because my stomach is doing so well, and my arthritic symptoms are so, so bad, the inflammation must be part of the arthritis at this point. The thing is, the higher my sed rate goes, the worse I feel, when it's 90, I am too fatigued to get off my chair and in too much pain to even function, on the rare occasion it goes into the 50's, (like if they try some extra prednisone which they won't let me stay on long term), I feel almost like my old self, more energy and very little pain... Nothing can make this sed rate come down. The doctors were sure Humira would do it, it did drop it from 90 to 70 most days, but even there I feel pretty lousy. Does anyone have a similar problem or any suggestions on dealing with inflammation? Supplements, etc? The only thing that has worked so far is dreaded prednisone, I stay on five mg. because any less than that and I'm in trouble again. Any insight would be appreciated. Thanks so much for taking the time to read this.
Marla

Do you have an infection? All of the meds we are on mask the symptoms of infection while making the infection worse. Infection causes very high SED rates.

A couple of thoughts - 1) has your physician run blood work looking at the possibility of Lupus? The symptoms you describe are ones I experienced on top of my usual arthritic problems. 2) Has he tested for rheumatoid arthritis? 3) How are your cholesterol and triglyceride levels? People with high levels of those can have elevated SED rates. However, with your other symptoms I would think it more likely that it is something else.

I can totally relate. I have ankylosing spondylitis and get flare-ups of enthesitis all the time. I was originally diagnosed with spondyloarthropathy with enthesopathy, just a different way to say enteropathic arthritis. My sacroileac joints got really involved, I'm HLA B27 +, so they changed it to AS. Remicade helped with the enthesitis for the first two years and then it stopped working. Then I went on to Humira. It never really did much in the 2.5 months that I took it. That could be because I developed lupus from it [probably started with the Remicade.]

My rheumy just moved and I am devastated because he could really keep my enthesitis under control by using steroid injections around the inflamed tendon insertion points. He used ultrasound to locate the area and avoid complications because he could get the medication into the exact problem area. It is important to keep the inflammation at bay because repeated inflammation of the tendon can lead to tears and calcification. I have lots of areas of calcification and they can really hinder my ability to move properly.

When I have had multiple problem areas, I have done prednisone bursts to help tamp down the inflammation. Usually 30 mg for 5 days, no taper. However, because of my avascular necrosis, they really don't like to do this very often. I know of no supplements that help with this. Some people use ice but I actually feel better when I apply heat to my areas. I tried Celebrex but it caused my legs to swell to tree trunks. Other NSAIDs bothered my gut.

I'm on Plaquenil for the lupus and I do think it has helped some with the fatigue I got. Oh, BTW, my sed rate has only been elevated ONCE and that was 5 years ago. I have documented inflammation in many areas - all while having a normal sed rate. My rheumy constantly checks my C3 Complement because he says it in a better indicator for my type of inflammation. It has NOT been normal in 5 years.