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I just got back from the rheumotologist. Two weeks ago I was in to see him about the mysterious joint/muscle pain that I've had for over a year. I tried another rheumotologist earlier this year but he knew nothing about my MC and I found it very difficult to educate him and still have to tell him each time that I couldn't take something.
When I was in two weeks ago they took a bunch of blood and x-rays of the major hurting areas. Today when he went over the blood work all my tests were normal except the SED rate. It has been elevated for over a year. Now, I chose this guy because this is who my GI sends patients to. It was great to not have to explain the colitis stuff to him. He said he has another patient with LC (which is what I have) with an elevated SED rate, joint/muscle pain but all other lab tests come back normal. He had discussed this with my GI (for the other patient) and the thought was that the LC is causing the immune system to go into gear.
Now, I'm not currently in a flare. I am doing this with diet and the only thing I notice is that I still have to cook my veggies to mush a lot of the time and do better with canned fruit, rather than fresh.
Has anyone else had an unexplained elevated SED rate?
When I left I left with a prescription for Lyrica to try for 30 days since low dose steriods didn't help.
Thanks,
Jan
SED Rate
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Hi Jan,
My SED rate is up every time my doc checks it, but he always shrugs it off as a result of pollen in the air, or some other allergen. Note that molds are very high right now in central Texas, and we just finished the ragweed season. Already, cedar pollen is beginning to be a factor in some locations, also.
Is your SED rate really high, or just a little over normal? I don't believe we've ever discussed it here, but I've always suspected that it may be related to the fact that we have a compromised immune system, so we tend to be overly sensitive to some things.
Incidentally, are you aware that while Lyrica is the first med officially offered as a treatment for fibromyalgia, it is primarily an anti-epileptic drug, (IOW, an anticonvulsant). It works by slowing down impulses in the brain that cause seizures. Lyrica also affects chemicals in the brain that send pain signals across the nervous system. It's also used to treat pain caused by nerve damage, in people with diabetes, or certain herpes issues.
In case your doctor failed to mention this to you, since Lyrica is an anticonvulsant), be aware that some people entertain thoughts about suicide while taking it.
Please call your doctor immediately, if you have any new mood or behavioral changes, such as depression, anxiety, or if you feel agitated, hostile, restless, hyperactive, (either mentally or physically), or have thoughts about suicide or hurting yourself in any way.
Frankly, drugs such as that make me nervous, when they're prescribed to someone who doesn't actually have epilepsy. (IMO, messing with the nervous system, by tinkering with chemicals in the brain, when it's not absolutely necessary, may be asking for trouble). That said, though, for all I know, it may be a very safe and effective drug, because I know absolutely nothing about it's track record. Just don't let it lead you down the path to self-destructive thoughts. We've had quite a bit of experience with those issues on this board, in the past, due to the fact that MC itself tends to cause depression, and related issues.
I will say this: Most of us have found that if we truly control our MC symptoms, (by the diet), then our symptoms of arthritis, fibromyalgia, chronic fatigue syndrome, etc., are usually reduced to the point where they become minor issues, and in many cases, disappear completely.
Tex
My SED rate is up every time my doc checks it, but he always shrugs it off as a result of pollen in the air, or some other allergen. Note that molds are very high right now in central Texas, and we just finished the ragweed season. Already, cedar pollen is beginning to be a factor in some locations, also.
Is your SED rate really high, or just a little over normal? I don't believe we've ever discussed it here, but I've always suspected that it may be related to the fact that we have a compromised immune system, so we tend to be overly sensitive to some things.
Incidentally, are you aware that while Lyrica is the first med officially offered as a treatment for fibromyalgia, it is primarily an anti-epileptic drug, (IOW, an anticonvulsant). It works by slowing down impulses in the brain that cause seizures. Lyrica also affects chemicals in the brain that send pain signals across the nervous system. It's also used to treat pain caused by nerve damage, in people with diabetes, or certain herpes issues.
In case your doctor failed to mention this to you, since Lyrica is an anticonvulsant), be aware that some people entertain thoughts about suicide while taking it.
Please call your doctor immediately, if you have any new mood or behavioral changes, such as depression, anxiety, or if you feel agitated, hostile, restless, hyperactive, (either mentally or physically), or have thoughts about suicide or hurting yourself in any way.
Frankly, drugs such as that make me nervous, when they're prescribed to someone who doesn't actually have epilepsy. (IMO, messing with the nervous system, by tinkering with chemicals in the brain, when it's not absolutely necessary, may be asking for trouble). That said, though, for all I know, it may be a very safe and effective drug, because I know absolutely nothing about it's track record. Just don't let it lead you down the path to self-destructive thoughts. We've had quite a bit of experience with those issues on this board, in the past, due to the fact that MC itself tends to cause depression, and related issues.
I will say this: Most of us have found that if we truly control our MC symptoms, (by the diet), then our symptoms of arthritis, fibromyalgia, chronic fatigue syndrome, etc., are usually reduced to the point where they become minor issues, and in many cases, disappear completely.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
Thanks for your insight. My SED rate for over a year has ranged between 45 and 50. I have been using pain meds (primarily darvocet) for the joint/muscle issue. However, I know I tend to have an addictive personality so only use them when I absolutely have to. (I quit smoking 18 months ago and could go right back at the drop of a hat). Darvocet really interfers with my life as I am just a zombie for about 24 hours after taking it. The dosage on the lyrica that I am to take is much lower than what is being used for neuropathy and fibromylagia.
I'll keep an eye on the moods. After I herniated discs in my back they put me on Cymbalta (an antidepressant that is suppose to help with pain). It just gave me a bad case of dry mouth and I never felt it did much to reduce the pain. I finally just quit it one day. I did have a few bad days after that but have bounced back.
I have to call and check in with the Dr. in 2 weeks. If this doesn't help then I'm not sure where we will go from there.
I just found it interesting that my GI and he are looking at high SED rates being caused by the MC.
Jan
Thanks for your insight. My SED rate for over a year has ranged between 45 and 50. I have been using pain meds (primarily darvocet) for the joint/muscle issue. However, I know I tend to have an addictive personality so only use them when I absolutely have to. (I quit smoking 18 months ago and could go right back at the drop of a hat). Darvocet really interfers with my life as I am just a zombie for about 24 hours after taking it. The dosage on the lyrica that I am to take is much lower than what is being used for neuropathy and fibromylagia.
I'll keep an eye on the moods. After I herniated discs in my back they put me on Cymbalta (an antidepressant that is suppose to help with pain). It just gave me a bad case of dry mouth and I never felt it did much to reduce the pain. I finally just quit it one day. I did have a few bad days after that but have bounced back.
I have to call and check in with the Dr. in 2 weeks. If this doesn't help then I'm not sure where we will go from there.
I just found it interesting that my GI and he are looking at high SED rates being caused by the MC.
Jan
I don't understand why they would find an elevated SED rate to be remarkable. Among other things, an elevated SED rate is an indication of the presence of an inflammatory disease, and MC is most definitely an inflammatory disease. To be honest, I would be surprised if your SED rate were not elevated. Your rate is fairly high, but then, a lot of the issues you describe, also contribute, because they involve inflammation of one form or another.
FWIW, my doctor doesn't make the connection, either. As I mentioned, he looks for a reason for the elevated SED rate, and usually blames it on allergies of some type, and apparently it never dawns on him that it could be due to the MC, or associated issues. I believe the last time he checked my SED rate, was when I was doing the oat challenge, and I'm sure that I was having an MC reaction to the oats, and I even told him as much, but he still blamed it on the oak pollen, that was thick in the air at the the time.
So, I guess it's good that your doctors are beginning to associate it with MC - maybe they'll spread the word around to the doctors in the rest of the country. I just don't understand why they have so much trouble seeing a connection that seems so obvious.
Tex
FWIW, my doctor doesn't make the connection, either. As I mentioned, he looks for a reason for the elevated SED rate, and usually blames it on allergies of some type, and apparently it never dawns on him that it could be due to the MC, or associated issues. I believe the last time he checked my SED rate, was when I was doing the oat challenge, and I'm sure that I was having an MC reaction to the oats, and I even told him as much, but he still blamed it on the oak pollen, that was thick in the air at the the time.
So, I guess it's good that your doctors are beginning to associate it with MC - maybe they'll spread the word around to the doctors in the rest of the country. I just don't understand why they have so much trouble seeing a connection that seems so obvious. Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Hopeliveshere
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Hi Jeannine,
I couldn't remember the actual number, so I looked it up. It was 37. Remember, though, this was less than 6 weeks after I had finished an oat challenge, and a couple of months after the spring pollen season, (I get hay fever from oak pollen, and probably a few other tree species), a couple of years ago. The test was dated 06-07-2007.
You're most welcome.
Tex
I couldn't remember the actual number, so I looked it up. It was 37. Remember, though, this was less than 6 weeks after I had finished an oat challenge, and a couple of months after the spring pollen season, (I get hay fever from oak pollen, and probably a few other tree species), a couple of years ago. The test was dated 06-07-2007.
You're most welcome.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
Hopeliveshere
- Little Blue Penguin
- Posts: 31
- Joined: Sat Apr 25, 2009 8:54 pm
My sed rate hasn't been mentioned by my doctors in some time. I control my symptoms with meds. However, in the beginning it was quite high (don't have the numbers) and it took quite a while for it to go down. Since then they haven't mentioned it. Doesn't mean it hasn't been a bit high at times. I think the doc I have now doesn't necessarily "share" all the info at his disposal.
Love, Shirley
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill