Thursday, August 16, 2012

C-Reactive Protein (CRP) and Amyloidosis

Well folks, today was a knee slapper of a good day at my infusion and doctor's appointment. Will I ever get good news? Just a wee little nugget of happiness?

Big things are happening, and not for the best. I get my blood drawn every 4 to 6 weeks like a good little RA patient. My blood work mind you have never been good. The markers of inflammation like CRP and SED rate have been constantly elevated to some degree. However, since January, these two specific indicators for us RA/Rad folks have been showing that despite monthly Orencia infusions and 20mg of Arvava have not been containing the wildfire in me. So my CRP is supposed to be between 0 to 4.0. That there is a health inflamed free person. Me? Oh, I'm just at 42. 9. Yikes. SED rate used to be rated between 0-20 but they upped it to 32 for RA people. Mine? 45. Granted it has been as high as 90 and spikes to 60 once in a rare while. However, I have been a solid months in the mid 40's to low 50's. So needless to say, my numbers are in the dump.

I have had the hardest time breathing these last three weeks. Well, that was shown by RA lung today in an x-ray equipped with nodule. Bummer news there. Nasty prednisone was discussed, I refuted. Instead I got this shot in my ass called Celestrone? Anyone else heard of it or have had it? I was told it would not be like steroid shots in the ass. You know the kind, right? The awful stinging, subsequent pissing like a race horse, jittery, and sweaty. Well, I had all of that after being sold a false bill of goods. 

Something horrible was mentioned out loud today. One that I have been kicking around in the back of my head for a couple of months. The prospect of amyloidosis. People with RA have a much higher percentage of amyloid proteins in our bodies and consistently high CRP numbers are indicators for the disease. I did not mention a sneaking fear of mine until the doctor mentioned I might have a possibility of having it. Plus, the real shit kicker? My poor uncle suffered with this painful disease and died a slow horrible death. So, it is also in my genes. It's not looking good folks. My abnormal swelling and symptoms plus blood tests are pointing in this obscure direction. I will most likely need tissue samples of my kidneys under sedation and those tissue samples get sliced and di-sected with red Congo stain to show crystalizing. If this in fact true, I will have to go north to an amyloidosis center in Boston to get treated. The treatment is a heavy heavy dose of chemo for months on end and living in a germ free bubble until the process is complete. There are success rates but also death rates with this disease. I'm hoping this is just a far off hair brained idea that is so out of reach but one should always be prepared for the worst, then be happily surprised at good news. I have to admit I'm nervous. 

I still have to share the chiropractic story that had me in stitches, but I will have to leave that for another day. Amyloidosis, high CRP, and SED rate ate my mind up today and my last Orencia kicked me in my ass. Starting next month, I will finally be starting Rituxin. There is a loading dose with this infusion. I have to have 2 6 hour infusions in 2 weeks then I am not due for another infusion in 6 months. That will be a nice break from going every month. It will help my psyche to not see the death and disability I see on a monthly basis. Granted I will no longer have my mighty important B-cells anymore but I guess everything is a tradeoff in auto-immune disease world, right?

I leave you with a picture of my shameful RA report card. Womp womp to the 10th degree.

While getting my infusion today, I heard Rob Thomas' song he wrote for his feelings of helplessness about his wife's mystery auto-immune disease. It is a poignant song. I was singing it all day.

Then there is this other song that has been out about being a fighter, and that's what all of us are with disease....fighters. Granted, I'm no Olympian but I feel like a damn fighter every day with this disease and I am sure all of you can relate.


  1. I have a 99 sed rate today, maybe tomorrow it will rise over 100. My CRP is way too high. I have tried metho, EMbrel and Humira which I am on now...none of them worked. Metho did , but I became allergic to it as well as Embrel. Humira is not working for me. I have so much pain in my neck and upper back. My hands lately are swollen and hurt so much in the joints. I watch my salt content etc...I just can't seem to get rid of the pain. Is there another Dr I can go to to check to see where the inflammation is? I go to a Rheumy now and he wants me to start infusions of Orencia. I am scared as my body reacts to all these meds with breaking out etc. Help me someone?????

    1. Someone that has had RA since she was 28 told me to try CIMZIA. I went on it with shots every month. But it would wear off after 2 weeks. I am now going to the Rheumy every other week for a shot 200 mg in the back of the upper arm. So far it is working for me. I still have pain but it is far from the pain I had when I was on all of the drugs you listed. I was on all of them! Nothing seemed to work. I feel better too. My sed rate went down a bit. I will have my blod checked the beginning of June 2013 and will know if the Sed Rate has reduced further. They also ch4eck the CRP too!.

  2. Dear Anonymous,

    I am sorry for not seeing this sooner. I am so sorry you are having such great difficulty with your SED rate and CRP. I see two Rheum doctors now and neither of them can get mine under control too. My SED is now 71 after two rounds of Rituxan. I would suggest that you speak with your Rheum doctor about perhaps changing medications. I was on Orencia for 2 years. I am very allergic to medications too but did not have a reaction to that med. Perhaps your Rheum could put you on plaquenil or arava to take the place of your metho. A lot of people swear by gluten free dieting. I stay away from inflammatory foods called nightshades. I notice some difference. I am also about to start seeing a pain management specialist, start acupuncture, and go into cryogenic therapy. If you are not happy with your current doctor, I would seek out another opinion to help. I hope you get to feeling better soon.

    Take care,