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

My inflammatory tests were always negative until recently. Even with obvious inflammation the results would come back negative. I’m 41 now and was diagnosed several years ago. I had no signs of psoriasis other then the odd patch of eczema on an elbow or fingers, until recently when my hands started showing bumps that turned to patches and now also my right foot. I suffered my first flares in my late 20’s having a flare or two yearly until this past winter when I was flaring almost bi monthly. I managed with Celebrex,pain killers and the odd cortisone injection. I recently started MTX because of the increase in flares and some damage. You may want to request X-rays.

Went to the Nurse Practitioner today. Could not get her to send me to a rheumatologist. But finally she is at least referring me to a Dermatologist. Maybe if I get a diagnosis of psoriatic nail disease then maybe that will put a push into her to send me to the rheumatologist. I did get switched from Lyrica to neurotin, at my request to try something new, so we will see how that goes.

I did tell her that I am sleeping so so much better than I used to. And that I think the reason is eliminating Aspertame from my diet. So if any of you have not done so, I would recommend you read up on it and then eliminate that poison from your system.

Good that you are going to the dermatologist, Ann. When you get there, if the dermatologist says that you have psoriasis, tell her about your pains and ask him/her to refer you on to a rheumatologist. (And hope your insurance accepts that.)

I didn’t have anything that looked like psoriasis either. All I thought I had was toenail “fungus” that all known prescription anti-fungals didn’t touch. (Duuuuhhhh…) And of course, I assumed that this was a cosmetic issue and not worthy of concern. Presumably the gp thought the same. When I finally got to the dermie (after the rheumatologist said she thought I had PsA) she also noted the bumps and ridges on my nails, as well as the dry patch on one elbow. That was the dry patch that I always thought was just bad grooming. And as an aside, now that I am on Enbrel, my skin is no longer dry and “prickly”, my hands are soft, my cuticles are no longer overgrown and ragged, and there’s no dry skin flakes inside my black clothes. I know now that I’ve had under-the-radar psoriasis for a very long time.

Going the dermatology route is a good plan and will probably get you to the place you need to be. Let us know how it all plays out.

Spammy - After seeing Rheumys off and on for 15 years - they are just a strange bunch! When I first started having severe pain everywhere, high SED, etc., MTX did not work - he kept increasing it and it still did NOT work... finally I walked out in tears ... it must have been a "flare". I learned to live with the pain. Now, seeing two Rheumys (both just as strange) and MTX still does not work. You are not alone! :)

Spammy said:

Stoney, he probably hasn't 'seen it all' yet. But talk about making me feel odd! Thanks for mentioning that other med. I'll look into it.

My rheumatologist made my dx on the dactylitis of the toe alone. I have very small patches of what "may" be psoriasis. But he says I have all the outward signs of PsA and sent straight for the Enbrel. I would hope he wouldn't put me on that right out of the box unless he was 100% sure. All my tests came back normal too.

Sounds like my Rheumy #2. I brought my list, my records, etc. He took one look at my psoriasis, hands and nails and diagnosed me with PsA (Rheumy #1 started me on MTX while he is still doing lots of testing) and said he wanted to start me on Symboni (?); that the MTX I was taking was poison lol. I asked if he wanted to look at my labs, etc. ... Nope! He knew what it was and so it was .... Needless to say, I got sick shortly after that visit, had to go off the MTX anyway and am on my third round of antibiotics. Need to get "well" before I can start any new drugs LOL.

ddashby said:

My rheumatologist made my dx on the dactylitis of the toe alone. I have very small patches of what "may" be psoriasis. But he says I have all the outward signs of PsA and sent straight for the Enbrel. I would hope he wouldn't put me on that right out of the box unless he was 100% sure. All my tests came back normal too.

Thanks Tootles! :)

Tootles said:

Spammy - After seeing Rheumys off and on for 15 years - they are just a strange bunch! When I first started having severe pain everywhere, high SED, etc., MTX did not work - he kept increasing it and it still did NOT work... finally I walked out in tears ... it must have been a "flare". I learned to live with the pain. Now, seeing two Rheumys (both just as strange) and MTX still does not work. You are not alone! :)

There is not test for PsA. The labs results are only useful if they are flagged as high. If they are not, diagnosis of PsA is difficult; typically requires MRIs that suggest specific type of joint damage. MTX is not effecting in treating PsA in low doses. It typically takes 30mg+/week for any real benefits. However, benefits of MTX at 30mg+/ simply don’t outweigh the AEs.

http://m.rheumatology.oxfordjournals.org/content/early/2012/02/17/rheumatology.kes001.full

That’s harsh! So the 25 mg injections I’m currently on will probably not do anything and the progressive pain in several joints that I am now having will only get worse? Yes the psoriasis on my hands has cleared up and my foot is looking much better but my body is seizing up! I see my doctor again on Thursday. Thanks for sharing…



mataribot said:
There is not test for PsA. The labs results are only useful if they are flagged as high. If they are not, diagnosis of PsA is difficult; typically requires MRIs that suggest specific type of joint damage. MTX is not effecting in treating PsA in low doses. It typically takes 30mg+/week for any real benefits. However, benefits of MTX at 30mg+/ simply don't outweigh the AEs.

http://m.rheumatology.oxfordjournals.org/content/early/2012/02/17/r...

The study states there is no real statistical difference between people who take MTX and people who don’t take it. It doesn’t say that MTX can’t improve PsA for som people.

MTX is typically the the first in line treatment for PsA because…

  1. it’s cheap and easy to get approved
  2. it may work for some
  3. a lot of people with PsA have RA mixed in

I see no reason not to give MTX a try. If you don’t see results or can’t stand the AE’s complain.

Thanks for the clarification! To be honest I feel worse since starting but the reason I started treatment was because I was getting worse. I started taking pills… Starting with four and ending with eight. Now I’m on 25mg injections. Started MTX The end of April…any idea how long it may take to see an improvement because I’m getting worse. I wanted to take Celebrex daily to take the edge off but my doctor wants me to wait and see. I see him again Thursday. I’m getting a little worried because I’m starting to see some damage…changes in bones on hands, wrist and foot.



mataribot said:

I see no reason not to give MTX a try. If you don’t see results or can’t stand the AE’s complain.

I am not sure I am qualified to answer that question. I would asume 4 to 6 months, but don’t quote me.

Celebrex was a godsend for my hip. I took the 200 mg daily. The is drug is suppose to be hard on heart, but I had no issues with it. However, I did not work well for hands and feet. Unless you have stomach issues, there cheaper versions of it. Extremely hard to get approved in the US.

I abused my GP and got tylenol 3 subscribed. Both derm and rhumey keep saying “lets treat the disease and not the pain.” But when can’t even open a bag of peanuts on the airplane…

My main treatment is stelara. Works wonders for my skin, but seems to be a dud for PsA.

It took them 4 years to get me diagnosed as having PsA. Like you, I didn't have a high Rh factor. I finally got to a specialist and he looked at my labs in a different light. My immune system was through the roof, my system is always on alert for invaders. Unfortunately, it was viewing my own body as the invader. My toes and fingers were swollen, the swellings would rise and fall, I have one finger with a tendon problem, neck pain and shoulder tendonitis flare-ups. He got me on Methotexrate, then Enbrel, which worked like magic.

My labs have always been negative for RA and it took me almost 2 years to convince the PCP that I was having all these issues with pain in my hands, feet, ankles, back and neck. He kept saying they were negative, so finally I was very forceful in my request to see a Rhumi Dr. Rhumi said its not abnormal for the tests for inflamation to come back negative. That I definately had PSA. There was no question. I have had Psoriasis for over 40 years and had All symptoms of PSA started me right off with Methotrexate and Folic Acid and some pain pills til he can get the authorization for Humira or Enbrel. Now I just have to decide what to try first. So dont let the fact that all the tests come back Negative!

MTX is a horrible drug for PsA. Believe it or not, humira is extremely difficult to get approved,If you haven’t tried Enbrel first. Both of those biologics were designed to be taken with MTX, so lifespan without is short.

Dear Candi: Hi! No worries that the RH factor (for RA) was negative; it would be negative if you have Psoriatic Arthritis (someone correct me if I am wrong) - I have read that repeatedly. Mine is negative, as well. However, my SED Rate and CRP (inflammation tests) are always high. I am so sorry you are going through so much pain and it took so long to get diagnosed. You are in the right spot. I am a newbie, but everyone here is very supportive and likely know much more than I do. If it makes you feel any better, my Rheumy is also convinced that I have Lupus (have all symptoms including kidney involvement), but the ANA factor keeps coming back negative lol so he keeps testing each month. I believe he is convinced eventually it will be positive so he can write it down. I learned from my the support group on this site that it may be negative .. still could be Lupus if I have the other symptoms. Just like you with PsA.

Candi Crivea said:

My labs have always been negative for RA and it took me almost 2 years to convince the PCP that I was having all these issues with pain in my hands, feet, ankles, back and neck. He kept saying they were negative, so finally I was very forceful in my request to see a Rhumi Dr. Rhumi said its not abnormal for the tests for inflamation to come back negative. That I definately had PSA. There was no question. I have had Psoriasis for over 40 years and had All symptoms of PSA started me right off with Methotrexate and Folic Acid and some pain pills til he can get the authorization for Humira or Enbrel. Now I just have to decide what to try first. So dont let the fact that all the tests come back Negative!

Hey, I too am a RT and an RN. Practiced for the last 30+ at a major trauma center. As you know, X-rays will show any bone abnormality. X-rays will not tell you if it is RA,PsA or whatever other arthritis it may be. It will only show bony changes. That being said, there are hallmarks for PsA, that can be seen on X-Rays. One is Pencil in a Cup , bone destruction. But, these are usually indicative of Mutilans. So, the x-rays will only show a general arthritic changes. If the X-rays are read as normal bone changes related to age, that then is probably true, I said probably. I wasn't aware of Lyrica being used for arthritis pain, but there are always none indicated uses for a lot of medications.

There are other indicators for PsA you can read about them on almost any site. Not everyone has the same symptoms in a predictable pattern. There are a few pre-qualifiers of PsA lab test. Again, you can read about those. Even though it is called Psoriatic Arthritis, it is not a 100% pre-qualifier that you have Psoriasis to have PsA.

I was diagnosed by a Rhumatologist with a very good reputation in her field. She failed to find the indicators for Psoriasis, you know the Blue Silvery plaques, or even areas where the plaques may have been. She still made the diagnosis of PsA, based on labs and clinical findings.

There are only two Major types of arthritis but over 100 different forms of those types. The diagnosis will be one of exclusion, that is: the labs, x-rays, symptoms etc.it will take awhile to get the correct diagnosis. It took 5 years to get a final diagnosis of MS for me.

Hang in there

@Tootles

The RA Test is useless if it comes back negative. Doesn’t mean you don’t have RA nor does it mean you have PsA. There are some people with both PsA and RA that have a high RA factor test.

My RA Factor test, which is a very blunt instrument, comes back with a slight positive. Could mean I have a bit of RA going on as well as the PsA. But when they do the anti-CCP test, it’s negative, so I probably don’t have RA. My PsA was diagnosed on physical signs (there were lots) because my inflammation markers (ESR, CRP) are never very high. And that’s the thing about PsA: blood work can’t provide a definitive a-ha diagnosis. What a disease!