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acmdancer2010
New Member


Date Joined Dec 2011
Total Posts : 1
   Posted 12/18/2011 9:59 PM (GMT -7)   
A year ago i was diagnosed with RA in my jaw as well as TMJ. I test negative for RA, but my doctor says my MRI shows my joints in my jaw are deiteirating at a rate of which looks likeRA. I do blood work every 2 months, and my sed rate as been consistantly around 15.. my dr says its very high and that the normal range is between 0-7.. but the wierd thing is that I feel completely fine and don't understand I can feel fanstastic and my blood is showing i should feel like crap. So i was wondering what the normal rate was. I am going to go to an internal medicanist to discuss my blood work. Any thoughts:)?

shanbr
Regular Member


Date Joined Dec 2009
Total Posts : 103
   Posted 12/19/2011 10:46 PM (GMT -7)   
Some people don't have a sed rate at all, but still have symptoms of RA and need RA medication. Some people I have known will have low numbers are be disabled in a wheel chair most of their day and others will have around a 700 number and just use a cane. The sed rate can show how much inflammation is going on, yet it can be in the soft tissue (organs, muscles etc.) instead of the joints which makes it why someone does better then the other person.

Every rhummy i have had have told me not to worry about the sed number as it can mean so many different things, to concentrate on what hurts where.

One thing to make sure is that they touch your painful spots to get a good view at what is going on, I have had too many doctors just scoot me on through without looking me over, they just asked what hurts and how much from 0 to 10.

Took me 6yrs to get a good doctor, this can be so frustrating when you are hurting so much.

RA can make someone have tmj, a swelling of the jaw, carpal tunnel syndrome, swelling in part of the wrist/bottom of hand as well as swelling any soft tissue from skin, to muscle, soft bone, tendons etc.

Don't get me wrong though, about 99% of people with RA don't get the soft tissue swelling, but the joints in the body can go from the jaw to shoulders, hips, knees etc. basically anything that bends.

I hope you get the answers you are looking for and it doesn't take very long to get the right treatment.

God bless.

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 12/20/2011 9:09 AM (GMT -7)   
Unfortunately, as Shanbr said, the numbers can be high, low or just not there. Sed rate measures inflammation. If you are feeling fairly well its because you are not experiencing much inflammation. That doesnt mean that you do not have RA or that your joints may not be deteriorating, it just means that you are not feeling the effects of the disease. Believe it or not, many people never even know that they have RA unless something shows up in their blood work.

This would be a good reason to see a Rheumatologist. They are specialists in RA. They will examine you, check your symptoms, and then compare those with your blood work. It may take several visits to get it all worked out.

Please let us know how your visit goes and what the doctor is going to do for you?
Denita

forum moderator/RA

Rheumatoid arthritis, Fibromyalgia, meniscus tears in left knee, Cancer survivor

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 281
   Posted 12/22/2011 3:31 PM (GMT -7)   
 

Supposedly, about 20% of People with RA have a negative test result.  These People still have it though.  As far as the pain, there are 3 types of RA.  Mild, moderate and severe.  I was dxd. with severe RA.  Perhaps you have mild RA.  A friend of mine was dxd. with mild RA and only uses OTC medications since he isn't bothered by it much.
 
I have RA in almost every joint including my jaw.  Chewing is next to impossible at those times.  Thankfully, that doesn't occur often.
 
Ya, this sed rate issue doesn't make sense sometimes.  Last Spring my sed rate was 27(normal range here is 0-10).  I changed medications and it went down to 15.  My sed rate yesterday was 1.   shocked   I have been in about the same amount of pain all year.  My Rheumy said with the 1, that my joints are not deteriorating at this time although the pain is still at a higher level than we like, in many joints.
 
I, for one am thrilled that you are not suffering ACM.  I do wonder though how your Rheumy can decide how to medicate you without having the pain as a guide.  Interesting! 

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 12/23/2011 10:12 AM (GMT -7)   
MsOuchi,

My sed rate hovers around the 40-50 range and I am always aching somewhere. I also have fibromyalgia and malabsorbtion issues. It seems I hurt all the time. My rheumy never stated what degree/severety my RA is and he hasnt ordered any new scans or mri's to check. Right now we are trying to determine what is a good med regimen.

I just hope that we (doc and I) are not dragging our feet anywhere is this journey of the seek, find, and try routine. I have been seeing the same rheumy for over 6 years and I believe he is a good doc but would he be treating me differently if I just walked in the door versus treating me for 6 years of fibro??

Anyway, I am glad that you are coming back to this forum to add your thoughts and suggestions. It will be nice to get more people (newcomers and veterans) to visit this forum and get it up and running again.

Have a wonderful day
Denita

forum moderator/RA

Rheumatoid arthritis, Fibromyalgia, meniscus tears in left knee, Cancer survivor

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 281
   Posted 12/28/2011 2:42 PM (GMT -7)   
Hi Denita, I just got back from our Christmas long weekend away. I hope that yours was wonderful and that you experienced less pain. 
 
So you've had Fibro for 6 yrs. and just recently were dxd. with RA?  Yes, that sed rate(40-50) is experienced frequently by RA Patients including myself.  That's why I'm shocked that my SR is 1.  Yours will lower as you and your Rheumy, find the right combination of meds. for you.  It could take some time though. 
 
I'm sad that you are in such pain.  I do know how that goes.  Actually,  I feel pretty good today.  Unusual for me.  I got a shot of depo Medrol.  That is probably why I feel better.  I'm sure that the other newer med. hasn't totally kicked in yet, if it will.
 
What malabsorptions are you experiencing? 
 
I didn't know that there were different types of RA, for quite a while.  We had no internet back then.  It was several years later when I wanted to go to another Family wedding while my Rheumy wanted me in the hospital, since I was flaring so bad.  He told me then that I had severe RA and a few other things. 
 
Thank you again.  I'm looking forward to learning more also.  As the saying goes, you learn something new every day. :-)

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 12/29/2011 2:17 PM (GMT -7)   
msouchie, cool name.

I do not absorb iron, vitamin D, calcium, B-12 and a few other minor things. I have to get B-12 shots, take vitamin d once a week, every week, 3 prescription strength iron (I think they are 325mg) and a multi vitamin 2 times a day. I also take vitamin c to help absorb the iron and tums for the calcium. Even with this regimen I am always on the low side of normal with most of them. My iron hovers around 10 (11.5 being low normal) and my b-12 hovers in the 300's (375-900 normal range) and my vitamin D hovers at 30 (32 low normal).

Because of this issue I take twice the amount of the meds I see most on here taking. I think this is going to be the issue with the plaquenil too. Its been since July that I started it and I still see no difference in my everyday aches and pains. I do feel a bit more energetic though. I have a feeling that I will have to go to something that is injected versus oral if I want to get any kind of relief. This is something else that I will have to discuss in depth with the rheumy (endo takes care of all my malabsorption issues) because other than stating this fact on my info sheet, I don't think we ever talked about it or what it could mean to me and RA.

My endo is great, my rheumy thinks I am a hard case, the neuro thinks I am a hard case and the pcp thinks I am just nuts. But all in all I think that I have a good set of doctors.

Sometimes, though, I still wonder if they are right (RA) or that I will ever get "better". Its becoming a bit monotonous.
Denita

forum moderator/RA

Rheumatoid arthritis, Fibromyalgia, meniscus tears in left knee, Cancer survivor

Brucesmom
New Member


Date Joined Jan 2012
Total Posts : 9
   Posted 1/18/2012 8:02 AM (GMT -7)   
Hi...my son is 10 and is seronegative....he was so hard to diagnose...took 6 months, muscle contractures and a muscle biopsy to finally get a rheumatologist to see my kid. When your kid can't move and you go to 3 different hospitals and they say growing pains, in his head? Or maybe you need to not be so pushy. Gosh momma was mad! Ya like this is where I want to spend my time. He tested neg for all blood work..no RA no sed rate, or CRP( they can go together to show /confirm the inflammation. All markers were neg and so was muscle biopsy. He swells very little no warmth to joints or redness...he has never been above a 10 and hovers around 6 but at 6 weeks ago he was a 10 and yes he didn't feel good...very stiff and achy with a lot of enthesitis. Last Monday his blood work showed sed rate at 25 and CRP at 2.4.... We found it odd never been thAt high...he takes remicade every 3 weeks at 300 mg infusion. His peeds dr said they see it at 60 or more....but my kid since Christmas has been hurting. They put him on celebrex....we have to be careful cuz he's got Ulcerative Colitis and is allergic to Sulfa(but we tried it and the celebrex made up the difference of the remicade not working to it's full potential, but lower back is still tight though He feels good but his labs were high. They don't think anything of it...but my hubby and I do...cuz he's never in the past 3 1/2 years been any where near that number and CRP has always been <0.5....So IDK....there is slight swelling fingers, toes, knees but hes always like that...it's all so odd...I've noticed to with all the meds he has tried, MTX, Enbrel,Oriencia his pain would increase and swelling down or his swelling would increase and pain down. Remicade is longest he's been on any meds...hope it still continues to work. Jaw pain is tough...does an appliance help? Or steroid injections been talked about...ouch, I don't k ow much about arthritis in jaw so your information is beneficial...knowledge is powerful...hope this helped

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 281
   Posted 1/18/2012 8:30 PM (GMT -7)   
 

Sorry Denita, I missed this post somehow.  And thanks about the name.  Describes my life most of the time, like yours and others.
 
Gee, I see what you mean about malabsorptions.  I wonder what causes some People not to be able to absorb these important vits/minls?  That sure is tough having to take double dose of RA drugs.  I do not have this problem with malabsorptions thankfully but still most of the medications for RA do not work for me.  We don't get it.  These are most of the drugs that I have been on.  The darkened ones are the ones that have worked for me. 
 
Entrophen 10, Methotrexate, Plaquenil, Indomethacin, Arthrotec, Celebrex, Imuran, Myocrisin, Naproxen, Vioxx, Humira, Enbrel, Orencia, Arava, Prednisone, Depo Medrol, Actemra and a couple others. 
 
The Actemra we don't know about yet.  My inflammation did drop to 1 while on it which has not happened before but still I am in severe pain, if I stop the steroids.  Orencia was a bad drug for me.
 
That may be true about an injectable drug working better fr you.  Myocrisin worked well for me for a couple years.  It amazes me how many RA Patients nowadays(my Sis included) seem to be going almost straight to the biologics when some of the older drugs may work  We used to have to go through all the other drug types first  before we were allowed to go on the biologics.  What if they stop working or do not work at all?  Then do they try the older drugs which are cheaper, after?  I don't see many newer drugs in the pipeline at present.
 
Well that is good that you feel happy/content with your Doctors.  That's a plus.  Okay, granted your pcp is a bit out of touch. smilewinkgrin
 
I truly hope that you have way better Luck than I did in finding the painless path through most of your Life, my Dear.
Type 1 Diabetes - Heart murmur - Severe Rheumatoid Arthritis(RA) - Asthma - Raynauds - other stuff

Folic Acid - Fosavance - Methotrexate - Tramadol - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Salbutamol - Actemra - Prednisone - Humalog - Fluconazole - Systane Ultra - Aspirin(81 mgs.) - depo Medrol injection - One A Day Multi Vit. - Cod Liver Oil Capsules - other otcs

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 1/20/2012 11:01 AM (GMT -7)   
I am having some tough RA issues. Working with ortho and rheumy together. Ortho says he helps with the mechanics and the rheumy will take care of chemicals. Right now I am having trouble with my left knee again and I have tennis elbow in the left elbow. Just got cortisone shots in both.

Really going to have to have a really good talk with the rheumy about the absorption issues and the RA meds. I am thinking that he is just not putting the two and two together in this case. I guess its hard when you only see someone once every 6 months and thousands inbetween.

take care,
Denita

forum moderator/RA

Rheumatoid arthritis, Fibromyalgia, meniscus tears in left knee, Cancer survivor
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