Frustrated and seeking advice

Diagnosed the beginning of 2018. Have had mildly elevated liver enzymes for years so the Rheumy went right to humira. Worked beautifully for 4 months and then I got sick (what they thought may have been food poisoning) and they stopped it. 2 weeks after being on hold, the PsA started in. Since (2 weeks now) I have had pain and swelling in different joints almost daily. One day it will be in the knee, then move to the shoulder…the next day it will be in the fingers of one hand, then the back. I also had a fever of 101 for two days and cold barely walk when almost every joint was affected. I went to the general Dr because the Rheumotolgist would not deal with the lingering “slight” stomach discomfort and did not want to start the Humira up again. My C-Reactive protein level is elevated at 50, my liver enzymes were actually high normal (first time fell in the normal range for years). Otherwise all other labs were all normal. I would like to add that I have never had psoriasis or any skin issues (I am 60 years old), I was basically diagnosed after a (flare up, swollen, painful foot, red, hot with a fever and a toenail that almost looks like fungal but the Rheumy had it tested for fungal and ruled that out and said it was a defect in the nail associated with PsA), I know of no one in my family that had any type of psoriasis or arthritis. Any suggestions? Any help would be appreciated.

Autoimmune can also give you intestinal inflammation or irritable bowel syndrome. Your inflammation markers are through the roof. It is hard to get a solid diagnosis on Autoimmune diseases, mainly like you say, the pain jumps around in the body. I have that too, one day it is the hip, then the toes, then the ankle. Rheumy’s are also fickle like the disease, you have to find a caring one. They have to be able to work with a team, because this disease touches on so many different areas for the body; skin, heart, other organs, joints, etc.
You could also be having a infection of some sorts, especially with the high CRP, they need to rule that out before resuming the biologics, as that will give you a world of hurt, if you have a infection and start biologics again.
Good luck!


Thanks Jon_sparky. Very frustrating not to mention painful. I am currently in search of a new Rheumy as mine does not communicate with my PCP and all I seem to be doing is calling one and they tell me to call the other as they don’t address that specific issue. The search continues. Good luck to you also Jon_Sparky and thanks for responding.

Hi Cindy, Jon has pretty much hit the nail on the head - infection needs to be ruled out first - because a CRP like that can be an infection, and its not good to take pretty much any of the arthritis meds while you have an infection.

It is no wonder you feel lousy - as Jon said, that CRP is pretty high (too high for a virus, under the rule of thumb most docs use), and that level of inflammation alone will make you feel awful.

Did you actually get any antibiotics for the alleged food poisoning? Have you been treated in any way? If you still have a high CRP despite the food poisoning supposed to be gone, then there has to be a real suspicion that this is autoimmune - which leads back to what you have said - the search continues. I so wish I could tell you something more useful, except to say that many of us have been through this and most of us get it, so all the best.


Hi there,

my CRP was 45 due to PsA before starting treatment, though I hadn’t had any infections, and I too had a grotty-looking toenail biopsied which excluded fungus.

I’m not sure how infection can be ruled out … it’s probably simple enough, but I guess it would help you to know what kind of testing to ask your PCP for. Any thoughts on that @Jon_sparky & @Jen75?

I would have thought that with painful, swollen joints which responded well to 4 months of Humira, some kind of inflammatory arthritis is very likely on the cards. And as Jon mentions, gastric issues are fairly common alongside PsA and, presumably, other forms of inflammatory arthritis. It might be an idea to look for a rheumy that has a specific interest in PsA. It’s quite tricky to diagnose, so there’s a good chance any such rheumy will quite used to detective work and therefore inclined to look for other types of arthritis too.

I was going to ask if you’d thought of eliminating gluten and so on, to improve the digestive issues and therefore make the picture simpler. But then I searched this site (using the magnifying glass symbol at the top right of the page) and the upshot seems to be that trial and error is not the way to go, rather, (assuming infection is ruled-out) you should ask for a referral to a Gastro-Intestinal specialist for testing and then for dietary guidance too, if necessary. Sorry to suggest that you might need to find yet another doc!

In your shoes I’d be gagging to get back on a biologic, though safely of course.

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Thanks Sybil and yes I am almost to the point of begging to get back on the humira. I am going to do some research to see if there is a Rheumy that focuses more on PsA in my area or at least find one that I feel has open lines of communication and not be so quick to shuffle me off to the next Dr if an issue does arise.

Hi Jen.
Thanks for commenting. No antibiotics, no treatment. Just blood tests after going to the Dr a few times. It is hard to have the strength to continually have to keep “bugging” the Drs for help when no one seems to want to respond back or address the issues. I will continue my search for a rheumy that perhaps specializes more with PsA in hopes of getting more answers/solutions. Thanks again.

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Reactive Arthritis can mimic a autoimmune disease like PsA, this is caused by infection, it can also attack the joints.


you would think the Rheumy could in the least prescribe a strong NSAID or a course of steroids to get things into control, instead of doing nothing.
Good luck!


I was thinking reactive arthritis as a possibility too. You definitely need an inquisitive rheumy on the case, @cindybme.


I guess imaging is the main diagnostic tool for reactive arthritis. Probably get by with Ultrasound imaging.

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I have so much to learn. I never heard of reactive arthritis??? Will follow up and learn all I can. Thanks Jon

Never heard of reactive arthritis but will research and learn all I can while searching for a new Rheumy. Thank you Sybil

Could be the least worst possibility, cindybme, going by my limited knowledge anyway. I believe that, like PsA, Reactive Arthritis is diagnosed primarily on signs and symptoms as well as testing for infection if deemed necessary.

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Not until the liver enzymes level out and stay that way - thus the repeat blood tests. The inflammatory markers are too high for PsA and that CRP is a liver measurement as well as an inflammatory marker.

Let me be brutally blunt here. This isn’t the thread to bring my personal battles up, but it might offer some perspective as to why the docs are dragging their feet. we went through this recently with my granddaugter. Finally I demanded them do a liver biopsy yesterday while she was in the hospital for yet another issue. The Hospitalist wanted to refer me to psych claiming I had Munchausen Syndrome by proxy. I pulled some rank. The test was done and as I suspected, early results indicate Auto-immune Hepatitis. Ultimately its a transplant or fatal. I’m not suggesting this is the DX for Cindy, 60 is awfully late for that DX my Granddaughter is prime age. Just that something else is going on and its not PsA.

My 2 cents says it sounds like Cindybme has some wise docs who either aren’t communicating well or have more questions than answers. You can live with pain, but you need to take care of kidney and liver first those organs are hard to live with out. Nothing causes more damage to them (including disease) than medications and especially those used for arthritis.

Docs taking time is NOT because they don’t care its because they do. They are also trained to keep most of their thoughts to themselves - it is in the patients best interest. A pissed off patient is MUCH better than a scared patient while they seek and get answers. Simply put when the liver numbers return to normal and stay there things can progress. Most times they do and no one knows why they were high to begin with.