Hey guys I have been having awful months lately and I just wanted to know if...

So, I went home after a week, not knowing what the problem was, just with SED rates and CRP high. I was supposed to maintain 20mg of pred for 20 days and after that start lowering the dose(since I am in remission for a while and it was not necessary to use the pred because of the TAK). The doctor's appointment would be 2 months later (it seems they are not taking me seriously). The thing is, the first week home was perfect, I didn't feel anything at all.

One week later... the nightmare came back. Now it has been 3 weeks I came back from the hospital and I'm trying things on my own. Yesterday I had many tests of my hormones done (probably it has nothing to do with it, but we are "shooting everywhere" at this point). A few results have already come back and everything is normal (again) but the SED rate and CRP.

Seriously, I don't know what to do anymore. This pain is ending my quality of life, I barely can do my things because I am always tired for not being able to sleep.

Any ideas guys?

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  • Have you seen a gastroenterologist? Or has someone done on endoscopy on you yet? It could be an ulcer or GERD/acid reflux. The pain would get worse at night when you lay down because the acid is coming up in your esophagus. It wouldn't show up on an X-ray, ultrasound, or CT scan. Only an endoscopy or a camera down your esophagus would pick up the damage.

  • So, the thing is, it seems not to be in the stomach. It's more like on the left side of the body, sometimes in the back-left side of the last rib (it's hard to explain the point). It's more or less on the spleen area, that's why we thought that could be the problem. Besides, if it was reflux, I would get other kind of symptoms upper. :(

  • Possibly. I suggested it because last fall, I got very severe pain in my ribs on the front left side. I was miserable at night, the pain was breathtaking. Enough that I went to the ER to rule out pancreatitis. They referred me to a gastroenterologist who upped my omeprazole, & the pain disappeared. All of my labs were clear, though.

  • I see... any idea is welcome. I will mention it next time I see my doctor (very soon I believe). It is improbable but not impossible, right? Thanks Laura!

  • If it's the abdominal area rather than chest, are you having any other symptoms, eg diahorrea?

  • Nope. Feces are normal. The only symptom I have is the pain.

  • Havre they checked your gall bladder?

  • No... But if it was the problem, shouldn't it hurt on the right side?

  • Not necessarily. When I used to have attacks the pain was on the left side and across my lower back and it was worse at night.

  • Good to know. I'm going to investigate that. Thanks Anna. :)

  • I swear im not trying to be funny. It may not hurt to get tested for std's. Some can lay low for years then start causing pain out of nowhere, and it's not uncommon for women to learn that their partner has been unfaithful. Even if you feel there is no way possible, you've checked all the things that make sense. Might be time to check things that dont make sense. I hope I didn't offend you, I don't even know you, so I definitely am not suggesting anything bad about you or questionable about your lifestyle. Just hoping to be helpful in finding the reason for your pain so that they can fix it. And of course we all suppress our immune systems, so it would be especially easy to catch all kinds of things. Be persistent, the er told me my ct scan was "pristine" after an angio and that my "discomfort" was likely constipation and wrote me for a laxative and valium. Turns out i had an internal bleed causing a hematoma to build on top of a nerve center. Im lucky it was a small bleed, if it was a large one, i would have gone home and bled to death. Dont let them blow you off when your body is telling you something is wrong. I know it's hard when you are in pain, no one should have to be the patient and the advocate at the same time.

  • So the prednisone is the only thing that has helped? And your CRP and sed rate are high? I'm confused as to why they're reducing your steroids if your inflammation markers are high?

  • I've also had pain in my rib/waist area, one time it was kidney issue and the other was my lungs.

    Hope you get figured out. Don't give up, sounds like you have a good plan to checked all over! :)

  • Yeah. The sed and crp are high but they are reducing it because I can't stand too much time on it since my eyes can be damaged (result of using the pred for so much time). Besides, even with the pred, the blood tests wouldn't change. The only reason they put me into it was because we ran out of options when trying to make the pain go away.

    Kidney and lungs have already been covered, they are fine. For one side this is good because it means these organs are OK. But it's frustating not knowing what is wrong. Thanks Krystle. :)

  • Don't worry, I don't get offended. Yeah, like I said, I am trying everything I can, so this is also one option. Not that I doubt of my boyfriend or anything but I am aware that when it comes to us, we have to take things seriously. So, next week I am going to do one of those tests women have to do every year. It was about time already and the occasion asks for it. However, I do not think this could be the problem because I don't have any symptoms like odors, itching or anything like that. Besides, my periods are very accurate. Anyway, thanks for your help Elizabeth. :)

  • I could have written this!!!! Right now I'm curled up with a heating pad. That seems to help a bit. My PCP put me on a pred taper. That helped. Short term. My rheumy and my nephrologist both said - not the TAK. Then why does the pred help??

    I am also anemic and my kidney function goes down when I'm hurting. I have a high white count - but no bacteria. They say my kidneys look normal.

    I also had a endoscopy and colonoscopy - both showed some inflammation, but otherwise normal.

  • Wow, really? You know what else also helps? Hot shower. It helps a little but the pain always come back once you finish. So, what's your next step? Tomorrow I am going through a total ultrasound of the abdominal area.

  • My last blood work after the pred shows that things are still abnormal. Going to have it done again next week. My rheumy doesn't want to put me on pred. Going to

    Ask my PCP for an MRA - to see if there is a change in my veins going to my kidneys.

  • I see... keep me updated when you have your results. It's not so common to find somebody else in the same "doubt" period. How long have you been feeling this pain?

  • This particular pain - a year. It's very frustrating when you feel as though no ones listening. Strangely enough, I feel like my blood work backs me up. My anemia got worse - when this started.

  • You keep in touch too. Not that I'd ever wish pain on anyone - there is some comfort knowing that someone else gets it. You know??

  • Yeah, tell me about it.

  • My TAK started that same way. I had fevers for several months and chronic diarrhea for like 5 months before I ended up in ER. Had severe pain in left side under the ribs. Very same thing! They never could find what was causing the pain and i still say it was no blood going to spleen. I still have the same pain , but of course not as bad.

  • And did they find out which arteries were blocked?

  • Yep, high fevers for me too but the 'runs' were diagnosed as Crohn's after a colonoscopy. I get the left-sided pain under the ribs when that particular bend in my colon is inflamed. I know exactly where that is after the scope because it hurt as the scope was going round the bend!