Has any one been diagnosed with PSA that has had repeatedly negative labs for inflammation

General
42

YES YES YES, my lab work always looks perfect. It doesn't show up on labs even when I'm hobbling around hardly able to walk due to foot pain!

You need to ask for a referral to a specialist! Autoimmune disease is different for everyone, its hard to know whats doing on inside. Also an MRI will show what is really going on. You need and MRI, ask for one, X-rays don't show the inflammatory damage. The X-rays of my feet are always normal but the MRI shows inflammation and cinnivitis in all my joints.

For your low back, have you tried a "tens Unit" or "stem machine"? My husband get really bad muscle tension in his back and he uses a back brace that has a stem unit in it and it really works for him.

Hope this helps and you get answers. Remember you need to be your own advocate!!! Ask for what you need.

Sarah

43

My labs have been 'normal' during my worst flares. I did not respond to MTX. I have had xray that do not show anything.

As far as doctors being responsive, I have to laugh now. I was diagnosed about two years ago but was having symptoms long before that. It was only after changing primary doctors twice & finally going to the rheumy directly that I got diagnosed.

I was complaining of recurrent back pain to the first doctor. During the physical exam, I extended my hand and said that my nails appear pitted and asked if that meant anything. He glared at me like I was crazy & pushed my hand away. Of course, I now know nail pitting & nail separation are both symptoms of psoriatic disease.

With the second doctor, I not only complained of back issues but terrible pain in my hands and later my feet. I had a slightly elevated WBC in repeated blood tests. I had active psoriasis which he was treating. He attributed the hand pain to repetitive motion injury or carpal tunnel syndrome & referred me to an orthopedic surgeon. He attributed the foot pain to gout and told me to go on a diet but never actually tested for gout. And he told me that my elevated WBC might indicate some form of leukemia but he wasn't going to refer me to a hematologist just yet. I ended up connecting the dots myself. I finally raised the issue that it may be PsA and ask him what my blood work indicated. Turns out he had never run an arthritis panel despite multiple visits & quarterly blood tests. I asked him to refer me to a rheumy. He did not give me a referral. I asked if he could at least give me a blood work slip to test for inflammation. He refused. Ultimately, I requested a copy of my records & learned that my WBC had been elevated in all of my blood tests for multiple visits. He had yet to work up this trend.

When I finally saw the rhuemy,in the first minutes of the clinical exam, he demonstrated that I had lost range of motion in my wrists. I had lost grip strength. He pointed out subtle indicators I wasn't even aware of. He had already read my records and diagnosed me on the spot that first visit, no doubts.

So when my regular follow up appointment with my primary doc came up, I was actually interested to see how he would respond to this news. But that moment never came. The doctor had moved his office and they had neglected to inform me of the move or the new location. So here I am standing at the door of a now vacant medical suite. There wasn't so much as a sign with the new address, nothing. Needless to say, I found a new primary that my rheumy recommended.

My advice to anyone not getting satisfaction is to seek second opinions. And if it comes down to paying out of pocket for an appointment then do it. It is not worth trying to save a hundred dollars only to go without diagnosis & treatment for who knows how long. I had notable symptoms and was struggling 6 years before diagnosis. I am now long term disabled, unable to work. Who knows, if my condition was recognized sooner & treated earlier, perhaps a different outcome.

You owe it to your self to get to the bottom of things. I think others have offered great advice already. Advocate for you.

Regardless of the diagnosis, I hope you find an effective treatment & some peace of mind :)

44

People must take control of their own health in today’s world. There are good Dr.'s and bad ones. If any Dr or PA or NP won’t give a referral or disregards something you feel is important. FIRE them! Find someone who will listen. I was lucky. I’m a nurse and didn’t take no for an answer. My first primary doc said I was anemic and when my inflammatory labs were normal he said I was fine. I said point blank “so your telling me the pain in my hands and feet is from anemia?” He said, “sure, why not”. I never went back to that idiot. Lucky for me I didn’t need a referral to see a specialist. So I just made an apt for a rheumy and got a diagnosis on the spot. But he was an idiot too and wouldn’t agressivly treat me so I ended up going through three more rheumies before I found one I could trust! Your the patient, you be in charge!

45

I don't have any of those options. Our insurance is thru the government, as DH is retired military. We were told we would leave the practice of an internist and go to a Nurse Practitioner instead. And we are not allowed to go to anyone else without a referral from her. It is not that she is a bad health care provider. But I do think she is very careful about over referring patients out of her practice. At least I am now getting to go to a dermatologist, even if it is for a mole check. But I did tell her I was going to ask about my nail disease and that if they think that, or any other place on my body, is psoriasis then I am going to demand to go to a rheumatologist. And I am a very recently retired member of the health care profession. I worked as an xray tech for over 30 years and am very well versed in the health care system. But sometimes we do get stuck and are at the mercy of the mechanics of it all. I don't necessarily think you were directing your comments to me, but I just wanted to say that everybody does not have the same options for their health care.

swolf5 said:

People must take control of their own health in today's world. There are good Dr.'s and bad ones. If any Dr or PA or NP won't give a referral or disregards something you feel is important. FIRE them! Find someone who will listen. I was lucky. I'm a nurse and didn't take no for an answer. My first primary doc said I was anemic and when my inflammatory labs were normal he said I was fine. I said point blank "so your telling me the pain in my hands and feet is from anemia?" He said, "sure, why not". I never went back to that idiot. Lucky for me I didn't need a referral to see a specialist. So I just made an apt for a rheumy and got a diagnosis on the spot. But he was an idiot too and wouldn't agressivly treat me so I ended up going through three more rheumies before I found one I could trust! Your the patient, you be in charge!
46

Hi, Ann, you’re right. There’s so much variation in what medical services people have at their disposal.`But when you hit an obstacle that you can’t get over, you just have to go around it. And you have. Going to a dermie is a good thing.
Could I make a suggestion? When you get to the dermatologist and the discussion turns to your nail issues, be up front about your pain and what you think you may have. It may be possible for her to refer you on, rather than your having to return to the NP for a referral. And even if you do have to go back to the gatekeeper, the dermatologist’s opinion of whether you might have PsA will carry weight with your NP.
You’ll get your answers. You’re savvy and you’re determined!

47


The common indicators of inflammation are C-Reactive Protein and SED Rate. Mine have never shown as positive on these yet I definitely have had inflammation. My Rheumy had to go to a much more expensive test for inflammation of the bowl to find inflammation - it was positive. If your doc. has not yet run a bowl inflammation test then you are not getting a through eval.

48

I'm not sure if you mean BOWL or BOWEL? Because my crp & sed are normal too.

49

I am not aware of the human body aving a bowl but we do have a bowel.

50

That is exactly my plan. I do have to go back thru the NP for any referral. I never really even felt the need to go to the dermatologist. But when the NP asked about a mole I have on my face and when it was checked last I jumped on the chance to go to someone else. Especially someone who would have knowledge of PSA. The mole is actually not even a mole, has been checked numerous times and I have always been told it wasn't something to ever really worry about. But heck, this girl saw a window and jumped right thru.

Seenie said:

Hi, Ann, you're right. There's so much variation in what medical services people have at their disposal.`But when you hit an obstacle that you can't get over, you just have to go around it. And you have. Going to a dermie is a good thing.
Could I make a suggestion? When you get to the dermatologist and the discussion turns to your nail issues, be up front about your pain and what you think you may have. It may be possible for her to refer you on, rather than your having to return to the NP for a referral. And even if you do have to go back to the gatekeeper, the dermatologist's opinion of whether you might have PsA will carry weight with your NP.
You'll get your answers. You're savvy and you're determined!
51

My sed rate was 1 and my c-reactive was only mildly elevated when I was diagnosed. It stayed that way for a couple of years. It has been elevated most of the last 4 or 5 years but it does not seem to be a good reflection of how I feel.

52

My sed rate is very rarely elevated, even in the worst flare. Only last month, my CRP was elevated (slightly) for the very first time. My dr's have always joked that if they went by labs only, I look like a healthy person!

53

Negative for inflammation? ALWAYS NEGATIVE, but I have certain positive genetic markers that indicate PsA, and a history of severe plaque psoriasis since age 15.

54

I’m have been negative on all labs except very low titer on ANA (which apparently is common and means nothing).

55

I am not a doctor but as a person who has been through the whole psoriatic arthritis thing for twnety years and I believe the touchy tummy is part of the illness. I have cured myself and no longer use any medication. i believe if you get the gut right the rest will follow. Check out people who have used a High fat low carb diet as I have done to cure many ailments I am fitter now at 48 than I have been for the past 30 years xx

56

I have actually done full scale Paleo several times for decent durations of time. I did feel better in many ways but it did not do anything at all to make my back feel better. I need to get back to it cause I am noticing my gut is not all that happy. I sure wish that eating totally grain free was not so boring. And I can honestly say it is. I gave it my all. I just need to get back in the mind set that will allow me to place my feeling better as a priority over food diversity.

57

Hi, I am in the same boat to some degree. I do have psoriasis but have not been confirmed for psa...My legs throb at times, more often than not, my knees sometimes are so painful i cannot think, my hips and back take over when legs and knees let them..always in pain somewhere and doc says it is polyneuropathy...what ever that is...or maybe fibromyalgia...or maybe something else. psyatica nerve, ...but no one has said that I have psa...my pain is mainly in my lower body. I have three bulgings discs at bottom of my spine...I am also a diabetic and feet are a bother as well....do I have psa..and if so, how do I prove it and if I prove it, what meds should I move to..right now I am on lyrica, cymbalta, morphine, meloxicam, and heart meds carvedilol 6.25..also crestor, soflax metformin, losartan, psoriasis cream drenisone and take omega 3 pills and prostate pills purchased on internet. Any, any advice, thoughts would help as life is discouraging these days.at age 76.

butter

58

I have always had no or very little inflammation showing in labs. My ESR is currently 0.1. My doctor wants to take me off Humira as he feels he is over treating me.

Even before being diagnosed when I had all the classical symptoms in my toes ESR was low.

I do want to come off Humira so I dont have an issue with stopping taking it. I am worried about infection, having said that in 2 years of taking Humira I have not knowingly had an infection.

59

My blood work has always been unremarkable, but my medical history is littered with events and trips to the ER that always ended with an inflammation cause.

I am a military spouse and am in the military medical system and it's brutal. It took 5 years for me to convince someone to send me to a rheumatologist because someone once put fibromyalgia on my chart and we had to change duty stations before anyone would ever consider that it might be incorrect.


I finally got to see the rheumy last week. Imagine how horrified I was to learn that the tests the military has been running these last few years would only catch any sort of arthritis if the blood work did the equivalent of using a stadium horn and screamed "check this out" in flashing neon signs. They didn't even run a CRP! I was even more horrified to learn that lab work indicated an infection that they never treated me for - which has to be cleared up before any meaningful medication can start.

I find a get a much better response from doctors when I go in with a written timeline of events: date, event (in bold), and explanation to include any treatment and final outcome. Then the doctor can ask me questions that got their attention and I don't forget anything. I have a lot of "white coat hypertension" because of poor treatment from doctors over the years, so I go blank in the office. My written record helps a LOT.

60



mimiB said:

My blood work is normal and I am HLB-27 neg. I was dx a little over a year ago and it has been that way the whole time.

61

I was told by my doctor we cannot be diagnosed with PsA by a blood test showing inflammation. I also was given this web page from her to show me how we are diagnosed:


"How Is Psoriatic Arthritis Diagnosed?

Your doctor will diagnose psoriatic arthritis based on a physical exam, patient history, family history, and lab tests.

While there is no specific lab test to diagnose psoriatic arthritis, blood tests from some patients may reveal mild anemia and elevated erythrocyte sedimentation rate.

Erythrocyte sedimentation rate (sed rate or ESR) is a test that gives a rough index of inflammation. The sed rate is not specific and can be elevated with many other conditions such as other autoimmune syndromes, infection, tumor, liver disease, orpregnancy.

Your doctor may do other blood tests such as rheumatoid factor or anti-CCP antibody to help exclude the diagnosis of rheumatoid arthritis. Rheumatoid factor is a blood test that is positive in 70% to 80% of those with rheumatoid arthritis. However, this test may be positive in healthy people and negative in people with rheumatoid arthritis, so it is not conclusive."

"How Is Psoriatic Arthritis Diagnosed? continued...

When one or two large joints (such as knees) are inflamed, arthrocentesis can be performed. Arthrocentesis is an office procedure in which a sterile needle is used to withdraw (aspirate) fluid from the inflamed joints. The fluid is then analyzed for infection, gout crystals, and other inflammatory conditions.

X-rays may show changes of cartilage or bone injury indicative of arthritis of the spine, sacroiliac joints, or joints of the hands. X-ray findings include bony erosions resulting from arthritis although they tend not to look the same as in rheumatoid arthritis

The blood test for the genetic marker HLA-B27 can be found in more than 50% of patients with psoriatic arthritis who have spine inflammation.

Because psoriatic arthritis may lead to bone loss, a bone density scan may be taken to measure bone strength and to assess which patients may be at risk for osteoporosis and fractures."



-- http://arthritis.webmd.com/psoriatic-arthritis/psoriatic-arthritis-...