Help! I still have no diagnosis!

Hi All

I have not posted for quite some time, but I am really struggling at present with my rhemy..

I have been taking methotrexate now 7 months and in that time have noticed a significant improvement in feeling stiff in the morning.. However I am continuing to have pain in my achilles, heels and shins (bi-lateral) and after many many appts with my rhemy, he has said that I dont have PsA actually it is all bio-mechanical..

I have had blood tests, (HLA B27 positive), X-Rays, Bone Scans, and MRI ( just 3 weesk ago and of one foot only and only some mild fluid retention showed) but my rhemy has now said to me I have no inflammation they can see so it must be bio-mechanical. To see a podiatrist and physio.. I have been seeing my podiatrist and physio now for 2 years, and both have said it isnt bio-mechancial and it was the physio who triggered it must be something more..

The Rhemy told me, that I can stop taking the methotrexate and see how I feel in 8-10weeks once it is gone from my system, or i can keep taking it until I review with him in 8 weeks, or I can keep taking it for the next 6-24 months before deciding to stop taking it and see what happens. The Rhemy has also prescribed Naprosyn to assist with my day to day pain.. I dont know what to do!! It seems like he is just dimissing my pain as non-existant or like he doesnt know what to do, as all my tests are "normal"... It was this Rhemy who decided on the PsA diagnosis after learning my Dad has severe psoriasis (I have none.)

I would love any adivce. and if anyone can recommend a Rhemy in South Australia taht would be great!



Gee, they give you several medications to control inflammation, you get some better, they do tests to find inflammation and don't find any so you mus not have it. I'm not sure how to argue with the logic of that one.

The foot thing is a different issue. For some reason folks with PsA and AS both have foot trouble when everything else is "controlled" Both Podiatrist and PT's have tendencey to put the blame elswhere (also somewhat logical) when what they do doesn't work..

My theory (granted not worth much) is that takes very little inflammation to cause foot problems (there is a lot of stuff in that little area) AND while not PURELY bio mechanical, it is related. The foot takes a lot of abuse from the rest of the body. We can do a lot of things that makes our feet feel better from stretches, massage, whirlpool bathes etc feel great for 1/2 hour and slowly be right back to where we started......

I get the impression your doc is trying to fill out a score card to get more aggressive treatment approved (paid for) Were I you I, would be blunt at your next appointment; " OFF THE RECORD, Are you asking me to quit MTX for a time to show I DO HAVE PsA (or similar) so we can proceed with further treatment or are you stumped?" You might be surprised at his answer. Its not always the Docs fault, way too much of our health care is in the hands of paper pushers in insurance and managed care offices making decisions FOR our docs......

Here's an example of Differential Diagnoses (Canada) to help you understand what he is up against:

Great Britan and the US give "points" for each and you have to have 9 of 12 (as I recall, I'll see if i can find it)

Ah HA Found 'em:

Then there is the protocols for the anti tnfs etc.

Hi Sam,

WOW our stories are similar. I feel like I'm in the same position. My family doctor felt I had PsA. I have psorasis on my face and scalp, sometimes it really flares up. My dad has the same kind of psorasis. My brother has awful plaque psorasis all over his body. And he has PsA. So, when my hands and other joints became so stiff and swollen, very sore SI joints, my nails started getting and I became super fatigued, my family doctor said "maybe it's PsA". So, I started reading on it, and all of the symptoms matched mine perfectly. I had the RA test done, and it was not a match. I went to my pain specialist (previous back issues from a fail spinal fusion) and he was convinced that PsA was the right diagnosis. He sent me to a Rheumy, supposedly the best in town.

Prior to my Rheumy visit, I went for bloodwork, xrays of my hands, feet and SI joints. (My knuckles were so swollen I couldn't get my rings off when they did the hand xrays). It took 5 months to get into the Rheumy, and my scalp/face psorasis had cleared up in that time. The Rheumy came in, spent 10 minutes with me and said "I don't think you have PsA...I don't see any signs of Psorasis." I told him that the meds the dermatologist gave me helped clear it up, and it flares occassionally (especially with stress). I asked, what about the swollen stiff knuckles/joints in my hands, elbows, and shin pain? How about my family history? What about the pitted fingernails? (I never had those things previously!) My pain doctor even thought maybe it was anklosying spondylitis. (Because the SI joints were so heavily involved - he does injections in the SI joints now for the pain.).

Rheumy told me Methotrexate/Biologics won't help me. But, feels it could possibly be early in the disease. How much more pain do I need to suffer before they can confirm it really IS PsA? Family history doesn't count? What's funny is the Pain doc gives me cortisone/pain killing spinal injections/epidurals and after I have those, my symptoms subside (it helps about 60% of the pain). But...when I skip 6 + months without injections, my symptoms are almost unbearable. There HAS to be something to this!!! The pain down my legs is almost unbearable without injections. I can barely walk across the room or stand for any time!

So, I can totally understand what you are going through. I feel like I have been dismissed without any answers too. They also gave me Naproxyn, which does almost NOTHING for this pain.

I hope you find answers, because if you feel like I do, I know you are super frustrated now.

Good luck to you Sam!

Lainee B.

If you have a good relationship with your Dermatologist, rember that several of the Biologics can also be prescribed for Psoriasis (and are) that may be a way to go......

I started Enbrel last summer. I got some relief almost immediatly but it didn't last the week. My Rheumy siad she couldn't increase the frequwensey but did I have any psoriasis anywhere? I had about a dime sized spot on one knee. It was enough for her to call the Skin Doc and get the Enbrel incresed to two times a week. She told me either one of them could have made the change. Anyway Lainee, its worth a try. If you get treatment who cares what they call it??????

I also live in Australia. There are no private rheumys within 800km of where I live, am on the wait list to see the public rheumy (18 month wait list!) Yes, I could pay to fly somewhere else & see someone, but would have no idea who is a good one, and I also prefer to have closer access. HOWEVER! echoing tntlambs comments (who always gives great information! many thanks TNT) , I have a fantastic dermatologist (& his nurse-WOW she's good) who also happens to be a specialist physician. Most of the drugs to treat psoriasis also treat PSA so he has gradually worked me through them + has done all the tests bloods/xrays/bone scan so we all know I have PSA- if nothing else the symptoms tell me it's true. I will still see the rheumy eventually but figure it's just a rubber stamp on the whole thing.

Unfortunately, in OZ there are pretty strict controls by Medicare and you have to FAIL a certain number of treatments before you can start the biologics. Your doctors prescribing conditions are are strictly enforced!!Fortunately for us in OZ the govt subsidises the costs heavily, so I am paying only $35 or so per month for my Humira.

The key is to understand the criteria and make sure you meet them when your assessment is being done! and your doc/nurse may indeed ''allow'' your psoriasis/ psa to worsen so you can qualify (although this won't be stated as such!)

I have failed EVERYTHING previously prescribed for me (genuinely). I have now been on Humira for one month and am noticing a big difference! I am cautiously joyous about it ( and for me, minimal side effects- awesome!)

I have the first compulsory review of my eligibility to continue this treatment in 12 weeks- Medicare sets a MINIMUM 75% improvement to continue treatment.

I will absolutely meet this- even if using a touch of creativity!

Good luck! Work your doctors hard !

and, here's the link for the Medicare criteria for Biologic treatment

Hi Sam,

Sorry to hear you are having a hard time. I see Dr Michael Shanahan at FMC. He is pretty good and has been doing his job for AGES. A few other people I know like him too. I have not yet felt the need to shop around. Is FMC to far for you to travel? I have a friend who sees someone in the city and I think she has shopped around. I could as her. A good Dr is essential. Shel