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Home » Health and Arthritis Research News » Just Diagnosed » High Sed Rate and joint pain?

High Sed Rate and joint pain? Expand / Collapse
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Kelly Jurceka
Posted Saturday, December 06, 2008 9:51 PM


 

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Hi there. Last December I had a really awful intestinal/vomiting/fever type viral infection. Day 2 of it and every joint in my body was in severe pain. I've been to two rheumys and they did blood work and said they thought for sure it'd come back as RA but when all the labs were totally normal and I had no swelling in/around the joints then they acted like I WAS NUTS. I finally got to see a professor of rheumatology and he, too acted like maybe it was all in my head as he saw my records from before showing normal labs and he too saw that I had no swelling. Well he went ahead and had more labs drawn and most aren't back yet but I got a call from him the other night. He said my sed rate was pretty high and that now we're "going to have to keep an eye on you." He said he's not sure what I have yet and that this is a confusing case due to lack of swelling or redness in/around the joints. He's hoping when the other blood work comes back that'll give him more info. In the mean time- have you heard of the sed rate going up and then other things come after? What does a high sed rate USUALLY mean? I have loads of pain and stiffness in my ankles, shoulders, wrists and fingers (at times-the fingers) Some days are better than others but there is no pain free day. Thanks for any info you have!
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Grandpavan
Posted Sunday, December 07, 2008 12:51 AM


 

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Rheumatologists are used to dealing only with various kinds of arthritis or related illnesses, while you could have something else entirely.  A good diagnostician (usually a GP) would also look at many things that are sometimes mistaken for RA.  Two that come to mind are hypothyroidism and Lyme disease.  I think the common test for Lyme disease is less accurate than a newer test that is not run by many labs but sometimes is positive when the more common test is negative.  As  you can probably tell, I'm not medically trained but from a few years on boards like this one I have read a lot of stories. 

If you have an inflammatory disease like RA or other inflammatory arthritis you would usually get quite a bit of relief from a corticosteroid like Prednisone.  This not only permits you to function better, but also gives some diagnostic clues.  I hope you get effective treatment.  God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.

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starshine
Posted Sunday, December 14, 2008 2:59 AM


 

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Welcome to the board.   It sometimes takes a long time to get a diagnosis.  It took 2 years for me.  It was a toss up between RA and Lupus.  A high SED rate indicates inflamation but is not specific to any disease.  It took a few months for redness and swelling to become visible on me.  The pain and stiffness was severe and incapaciting for me in the beginning, but even then it was about 6 months from the first sign of joint pain.  I was taking an NSAID which probably masked the severe symptoms.  I had rheumatoid nodules fairly soon, also.  Good luck and try to be patient with the doctors.  ss
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April Anderton
Posted Thursday, December 18, 2008 8:27 PM


 

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I just got a semi-diagnosis today and maybe it will help. I have the same symptoms and have had them for 2 years and 2 months, about 6 weeks after giving birth. After 2 years of waiting, testing waiting, I have a general diagnosis of undifferentiated spondyloarthropothy. My xrays showed enthritis and my CRP, SED rate and platelets were all high. I have stiffness in all my joints but have had back pain since I was 12 and pain in my hands since about 18. The other joints have only been affected for 2 years.

I don't think this is the final diagnosis but it is certainly further than we've ever gotten and I am hoping for some changes with the medications I just started today. (sulfasalazine and plaquenil) After I'm done having kids, we may switch to different ones but for now, I'll have blood drawn every 4 weeks to see if there's progress on the inflammation.

It seems weird to be happy for a diagnosis like this but it is better than not knowing. Hopefully this will help in your search for answers!
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Grandpavan
Posted Saturday, December 20, 2008 12:07 PM


 

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Welcome to the board.  I think what you are happy about is not so much the diagnosis but it is the prospects of effective treatment.  If you come to the Rheumatoid Arthritis forum there will be a lot of information about people with similar problems including treatments for people of child-bearing age.  I look forward to seeing you on that forum.  God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.
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Melinda Gooden
Posted Wednesday, February 25, 2009 6:23 PM


 

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Did you find out what was wrong?

I have joint pain, swelling in my hands and feet, low-grade fever, and fatigue.  My SED rate is elevated and my cardiac reactive protein levels are high.  I have a b12 deficiency and vitamin d deficiency.  The doctors dont know what is wrong.  It isn't rheumatory, lupus, thyroid or diabetes.  Any ideas?

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Grandpavan
Posted Thursday, February 26, 2009 12:55 PM


 

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Welcome to the board.  I don't know how rheumatoid and lupus were ruled out, but few doctors other than a board-certified rheumaologist can make that diagnosis.  Often people don't get a definitive diagnosis until they see several different doctors and their diseases progress far enough to permit accurate diagnosis.  However, I believe that treatment should begin as soon as an inflammatory arthritis is suspected.  Of course, I'm not medically trained.

One common diagnostic aid is a short course of treatment with Prednisone or similar corticosteroid.  These are strong anti-inflammatories so treatment with an adequate dose will usually give quite prompt relief from inflammatory symptoms.  Failure to get some relief is a sign to look elsewhere for the cause, but does not completely rule out inflammatory arthritis.  I hope you get effective treatment and a diagnosis.  I regard the treatment to be mor important than the diagnosis.  God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.

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marissa mcconnell
Posted Friday, March 13, 2009 9:31 AM


 

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to whom it may concern my friend there is something in your blood called a rheumatoid factor that your family practice DR can test for and can rule out Rheumatoic factor.  I have cancer and have low vitamin D rates and a high sed rate with swelling in my hands and feet in the AM only and its cancer.  So please don't listen to joe shmo I have studied medecine for a long time.  Thanks love and get better.

marissa

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Grandpavan
Posted Friday, March 13, 2009 7:56 PM


 

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The Rheumatoid Factor is one blood test for RA and the anti-ccp is another and more specific test.  Both of these tests can have either false positives or false negatives so neither or both together cannor rule RA either in or out.  There are seven diagnostic criteria for RA and only one of these is for blood work, and any four of the remaining six are sufficient for a positive diagnosis.  I am not medically trained but I do believe the American College of Rheumatology.  God bless.

http://www3.interscience.wiley.com/journal/112162911/abstract?CRETRY=1&SRETRY=0

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.

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Peggy Harvey
Posted Saturday, May 09, 2009 4:13 PM


 

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I was diagnosed with Temporal Arteritis 10 months ago.  Temporal Arteritis and PMR usually run together.  Temporal Arteritis, also called Giant Cell Arteritis is inflammation in the arterties in the head.  Blindness can occur if the blood supply to the optic nerves is compromised.  A scary diagnosis for anyone......but, the good Lord leads us through all kinds of adversity.  I have been on Prednisone for 10 months, and unable to wean myself off it, as I have had two flares where my sed rate and C Reactive Protein tests were high.  Prednisone is a life saver, but it is almost as bad as the disease itself.  I have all the usual side effects and none of them are pretty.....I look like a chipmunk ready to give birth....so swollen, so miserable.  I am seeing a specialist in another month to see if I can take anything along with the Prednisone that will help my chances of lowering the dosage of prednisone to a mini dose.  I feel I cannot stay on prednisone much longer.  My sed rate is 50, but my internist is not increasing the Prednisone as it has raised both my blood pressure and glucose levels.  Is there anyone out there with success of a drug along with Prednisone to keep inflammation under control?  I am 65 years old......just the right age for temporal arteritis !!!  It is usually found in people over 50.  I would appreciate any advice.  Thanks.
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Lynne Costelloe
Posted Friday, May 22, 2009 6:28 AM


 

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I've stopped all "drug" therapy and moved to Beline Capsules.  They are Traditional Chinese Medicine and the only word I can use to describe the result is AMAZING!  I have no pain, no swelling, mobility is back and other than the limitations of the joint damage that happened while the docs tried every imaginable combination of drugs ... I feel like I did 12 years ago, before I was diagnosed!!

i get mine from www.belinecapsules.com

hope they can help you!

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Nancy Schwartz
Posted Tuesday, August 25, 2009 12:02 PM


 

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It is good to hear that I am not the only one suffering from this mystery illness. I too have been making the rounds of doctors with no success. I have the high sed rate, the fevers, the swellings and inflammation, the fatigue, the headache, etc. I also feel really bad about the effect this has had on my quality of life and my family. My head says get up and clean, do laundry, do something and my body says forget it. Let's just lay here some more. There are days when I don't even get dressed. I feel like garbage and now even the low dose of prednisone is not really helping too much. I am sorry you all are going through this too and was hoping to get online and get an answer for myself. Now I see that a diagnosis may never come, this in itself is pretty depressing. I was depressed enough by how lousy I felt, how long it was lasting and that no one had any idea what the devil this was. I wish us all to come up with some kind of answer and being on steroids permanently is not it, the side effects from long term use can be deadly.
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Pip
Posted Monday, August 31, 2009 12:29 AM


 

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Don't give up Nancy (and all) - they always come up with a diagnosis when some test turns positive.

Hugs,

Pip

Antibiotic Protocol - Minocin, Zithromax, Naproxen (occasionally), 1 mg. Folic Acid.

Supps are Milk Thistle, Black Cohosh, Bromelain, Potassium, Magnesium, Calcium, NAC, B12, Hawthorne, CoQ10, MSM, Tumeric, and weaning Melatonin!  PROBIOTICS, PROBIOTICS, PROBIOTICS!!!

Occassionally Nystatin, Diflucan, GSE, Oil of Oregano still sitting on the counter!

Feel free to PM me about the Antibiotic Protocol~

Healing is a matter of time, but it is sometimes also a matter of opportunity.               Hippocrates 

                         
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April Anderton
Posted Thursday, December 03, 2009 11:37 AM


 

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Just wanted to give an update and some hope! My last post was a year ago and I was just beginning treatment with immune suppressants. I still don't have a definite diagnosis, but after 3-4 months on the Plaquenil (I had a reaction to the sulfasalazine immediately and discontinued it) I started feeling halfway normal again. I was able to move more and feel decent all day. Now, a year later, I am at 90% about 90% of the time. A HUGE difference. I feel my age (36) most days instead of 90.

I'm still watching for the symptoms that might classify my 'undifferentiated' diagnosis, but I have my life back and I'm hoping early treatment will let me keep it for a long time! I'm very fortunate that my RE treated me even though there was no absolute diagnosis. ASK, ASK, ASK! And don't get discouraged! The Plaquenil did take 3-4 months to make any difference at all, but it DID. Don't give up!
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