My RD appt - inflammation markers | Arthritis Information

 

I had my fifth dose of Orencia last week and so far nothing much is happening.  In fact in the last few months, you may remember me posting that my inflammation markers have been going way up....

                            Apr     May      Jun

Sed rate (0-20)    58       47       79

CRP (0-4.9)          48.5    54.9    66.9

 

Even worse, my doc was saying that as long as I was feeling slightly better, to ignore the markers (even though the disease process continues).  I was very unhappy about that, but wanted to see how things went at my next appt.

 

So I had my next RD appt today, and believe it or not, my numbers have suddenly fallen...

 

                            Apr     May      Jun       Jul

Sed rate (0-20)    58       47       79        32

CRP (0-4.9)          48.5    54.9    66.9    42.6

 

It looks like Orencia may be doing something after all!  I'm not feeling an improvement so far, but it's also hard to tell because my back has been so painful that I have been feeling horrible, but that part's not due to the RA.  I'm still having swelling and pain in my hands and feet, so that's the part I'll need to watch.

 

In other news, my sky-high triglycerides also came down 10%, which is at least the right direction.  I had my Vitamin D level tested and it was very low (14.8, range is 32-100), so my doc gave me a script for a supplement.

 

So now it's back to waiting, and hoping that I'm going to start feeling what my lab work is showing.

Sounds like a little bit of a mixed bag on results, but encouraging on the drop in your counts.  Hope you soon feel the relief that the results seem to indicate.

Hi innerglow,

I have DDD as well as structual damage in my spine, and it does get really complicated.  For a start it's hard to weed out back pain from RA pain when the RD is assessing how effective the drug/s of choice are.  Add to that the fact that you can get RA in the facet joints of the lumbar and cervical spine, which can't be backed up by MRI or xray until some damage is done (esp. if your RA is the low inflammation, high erosion type), and add to that the fact that facet joint pain is very debilitating.

That's where I'm at now.  Most of my back pain is in my lumbar spine;  visible damage is in the thoracic spine.  No apparent reason for my lumbar pain, and I can only tell my RD that when my joint pain improves my back pain is much better.

So we have this funny kind of stalemate, similar to the time before I finally had a RA diagnosis, which I waited 5 years for because I am seronegative.  It's such a complicated disease, and back pain is complicated too. 

Good luck with it all, you have my empathy.

Suzanne, actually it's a very encouraging appt. and labs.  I'm not sure that you would feel much of a difference because you're labs are still highly elevated.  If they continue to drop you should start feeling the difference.  Along with the Vit. D you might talk with your RD about adding  fish oil tabs and Manganese.  They all seem to work together. 

When is your next infusion?  Lindy

Thanx all.  Next infusion is July 31. 

 

I used to take fish oil years ago and hated it.  I do have Flaxseed Oil around here somewhere and I thought I remembered reading that it works similarly.  It's hard when you're already taking so many pills (both prescriptions and supplements). When I told my hubby about the D supplement, that's the first thing he said..."oh, yet another pill".

 

I know there is definitely non-RA stuff going on in my back.  Before the RA even hit I had 3 cervical discs and 3 lumbar discs in varying states, plus cervical stenosis and lumbar bone marrow edema.  I also believe something is wrong in my SI joints, as that is my worst pain and has been all along, but they still don't find anything there and joint injections haven't helped.  Unfortunately we have come to the end of the treatment line on my lumbar spine.  Surgery's still an option on my neck, but I'm hoping to avoid it or delay it as long as possible.

 

Sometimes I think that my brain can only detect so much pain at once, so the back may feel worse but that's because I can't "isolate" the pain in my hands, or vice-versa.  Therfore when my back is really bad, I can't quite tell if my hands are getting better or worse.  One thing I did tell the doc is that my index fingers on both hands are definitely more painful in the knuckles (base and mid, not the ones closest to the fingertip).

Suzanne, boy can I relate to that last sentence.  I have developed back pain through the years, and the past three weeks have been horrible.  It's finally getting better. I'll tell hubby to get me some pineapples, cuz I am tired of all these supplement pills! Great to see your numbers down! May they continue to fall!That is good news! Hope they continue to fall and you start seeing some relief soon.

 

 

Congrats on falling, LOL! 

I think once you get your Vitamin D level back up where it should be, you will see a difference in your back pain and other random pain in the body.  It can make a huge difference!  Better times are ahead girl - you're on a roll!  Thanks, everyone.  Here's the odd thing though.  My ankles were down to "normal swelling" before my appointment, and since have been back up to "softball-sized" swelling with swelling in the feet and toes as well. (side note: anyone who's seen Wall-E, my feet look just like the feet of the people in hover-chairs!) I have been under some stress, but I still find it strange that just as my inflammatory markers are dropping, my swelling is increasing.
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