could this just be my colon saying "give up already!!" ??

So lately, I've been feeling like I'm just on my death bed. It started Sunday, with some mild pain in my knees. But by Monday afternoon, it felt like I had developed SEVERE arthritis in every single joint in my body, no exaggeration. Tuesday morning I had a fever of 103. I have had a fever every day since, it goes up and down but when it's down it's at 99. The pain was... excruciating. A couple of times I wanted to go to the emergency room but I couldn't get off my couch. Most of the pain has been in my legs, it feels like my calves are in a constant charlie horse, and my knees and ankles are swollen and feel like they have been smashed with a sledgehammer, and my feet are just tight and swollen. My fingers are too sore to make a fist, I can't touch my own shoulders because my elbows are too stiff. On top of that, when I take a deep breath, my chest, abdomen, and lower back, mostly on the left side, really hurt.

I went to my primary care doctor on Thursday. She sent me for blood work, a chest xray, and an abdominal ultrasound. The scans came back okay but she said the blood work looked really. Everything that says inflammation/infection was WAY elevated. But now she doesn't know why. So when I saw her for a follow up on Friday she sent me for a CT scan with barium contrast and IV dye. Just not fun. I was shivering which made the pain worse so I'm sitting on the table trying not to cry feeling miserable and just wishing they would tell me what's wrong.

I still haven't heard the results of the CT scan but I'm guessing they didn't find any thing too pressing.

So my thought is. If I have an infection every where that's cause total severe body pain, but all of my organs LOOK okay from the outside... Could be that my body is saying "ENOUGH IS ENOUGH!!!" My last CBC was in February but that one and four before it all showed elevated white counts so I'm assuming it's been up for awhile.

Weird thing is, my stomach has actually been acting okay. Well, it WAS... But I've been popping so much Ibuprofen for the pain and I was prescribed Cipro & Flagyl for a "suspected bladder infection" even though I have NO symptoms of a bladder infection. So I anticipate a flare up now. I just can't avoid taking the NSAIDs because the pain is so unbearable I don't know what else to do.

Any thoughts?

Sounds like the Remicade left you vulnerable for some kind of infection that your doc hasn't been able to identify yet. It might be beyond the expertise of your primary care doc. I would want to be sure their was some logic behind any more tests, that she is not just grasping at straws and wasting your time and money.

Can you get a non-NSAID pain reliever?
Sorry you are suffering so.

Well, the primary care doctor I see is an internal medicine doctor as opposed to a general family practitioner. I was hoping that would mean she might know more but it seems that might not be so. I think if she can't tell me anything Monday($60 in copays and who knows how much in tests later) then I will just go to my GI and see if he has any opinion. The last time I took prednisone I was on 45mg and it didn't help me at all, I think I've been on it so many times that not only did I become dependent on it but it just started to lose its effectiveness. So I avoid it like the plague.

Hi Edie...tough to hear you're in such a horrific state...I can only imagine your agony.

I think your doc should also send you to a rheumatologist as well as an internist..unless the internist is a rheumie......it's way too complicated to guess if it's UC related or a separate entity or a complication from pred or whatever....

Ibuprophen is very hard on the kidneys...maybe limit its intake?

I sure hope you're able to get answers soon.

quincy

kimor said...
I developed Remicade induced Lupus after being on Remicade for less than a year. My joint pain was unbelievable. Ediekristen - your symptoms sound very similar to mine. The Remicade helped my UC symptoms and I hated to go off it. My doctor says that the Lupus will go away after the Remicade leaves my system. I was put on prednisone and that made my pain tolerable instantly.

Oh my, I hope you get over this very quickly...how coommon of a side effect is this?

I live in Calgary, Alberta, a city of over 1 million people. My GI has personally seen 12 people with Remicade induced Lupus. The Rheumatoid Specialist that she referred me to has seen many of his arthritis patients with it. Both doctors told me that it has gone away within a few months in every patient that they have seen.

Edie, I'm so sorry that you're feeling absolutely horrible. Make sure your blood tests include ANA and dsDNA--they test for lupus. And still go see a rheumy.

I've been having joint pain for the past couples months but my ANA and dsDNA came back normal. But my PCP is still suggesting that I go to a rheumy.

Keep us updated!

Hi...well, It's great your GP is so responsive, and definitely a good thing you're able to see the GI on Friday....interesting about the thickening of the Sigmoid wall....could it possibly be that you have CD and not UC?


If the GI doesn't think you need a sig-scope...maybe insist on one just so that he's not relying on the CT scan alone. I guess there could be various reasons for the sigmoid to have thickened wall...worth doing some research on my part out of interest. One thing that's possible is that stool will sit in the sigmoid until it's ready to "download" into the rectum....maybe that's part of the reason for the thickening?? especially if you might have any form of constipation.

Please keep us updated on how the appointment goes.

quincy