uncontrollable sed rate

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snowbomb63
Regular Member


Date Joined May 2004
Total Posts : 61
   Posted 3/29/2009 1:43 PM (GMT -7)   
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
Crohn's, Enteropathic Arthritis, Fibromyalgia, Daily Migraine

Humira, Entocort, 6MP, Pentasa, Topamax, Effexor, Ultram,
Sed rate sits in the 70's and can't seem to get it down


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 3/29/2009 2:24 PM (GMT -7)   
Hope you get it all figured out. Mine just started to drop one day until it went to normal. There was a great thread on Lingzhi mushrooms for inflammation. I take some herbs that I find have helped bunches.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 3/29/2009 6:10 PM (GMT -7)   
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.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 3/30/2009 10:21 AM (GMT -7)   
What dosage is your Entocort...the full 9 mg?

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 3/30/2009 3:31 PM (GMT -7)   
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.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


snowbomb63
Regular Member


Date Joined May 2004
Total Posts : 61
   Posted 3/30/2009 6:54 PM (GMT -7)   
Thanks for all your input, in response, I definately do not have an infection, it's been going on far too long for that, it's been two years now, I am on six mg of entocort, and I have been tested for lupus and rheumatoid arthritis, both of which come up negative. However, I have been told onlyl 80% of people with RA have the rheumatoid factor, but still they thought the Humira would help. One of my doctors thought it sounded like something called "enthesitis" which is like an inflammation of all your ligaments or tendons where they attach to your bone, which would account for my "hot spots", all over my body it hurts to press on most of me. This doctor said that enthesitis can be tough to treat and can come with the arthritis of crohn's disease, I guess this is the best bet, but still I would just love any advice on ANY supplements or specific herbs to try ( I"m looking into those mushrooms) to try and get the sed rate down, any little bit will help. Thanks again, stay healthy everyone!
Marla
Crohn's, Enteropathic Arthritis, Fibromyalgia, Daily Migraine

Humira, Entocort, 6MP, Pentasa, Topamax, Effexor, Ultram,
Sed rate sits in the 70's and can't seem to get it down


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 3/31/2009 3:01 PM (GMT -7)   
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.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


snowbomb63
Regular Member


Date Joined May 2004
Total Posts : 61
   Posted 4/1/2009 12:26 PM (GMT -7)   
Ides, Your response really got to me, for one thing I'm so sorry your rheumy left, I really hope you can find another who can help you, you really deserve that. Also, it made me realize, my rheumy is really doing absolutely nothing to help me, all he does is hand me pain pills. You've really opened my eyes to see that I need a new doctor here who knows more about how to properly treat enthesitis. In fact, I was never told about possible calcifications, etc. It took me so very long to find a GI doc who listened and cared and helped and I guess now I am on a quest to find the same with my rheumy, sigh, it's so hard. The quality of life issues are such an issue at this point, as least the doctors could be more compassionate, don't you think? Thanks for everything, and stay well!
Marla
Crohn's, Enteropathic Arthritis, Fibromyalgia, Daily Migraine

Humira, Entocort, 6MP, Pentasa, Topamax, Effexor, Ultram,
Sed rate sits in the 70's and can't seem to get it down

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