I'm new to this board so I hope its ok to post this. I've been suffering for over 2 years. The pain started in my left hip then my right. Then my knees wrists, fingers, toes, shoulders etc.
My RF was negative. My other inflammatory markers are slightly raised or normal most of the time. My bloods and my pain don't correlate at all. I can't walk at the min and haven't driven my car in months but according to my rhemy "I look fine"...
I was seeing a rheumatologist for a year. I was on plaqeunil and solzopyrin neither of which did much. He doesn't really know what's wrong. I queried PSA because my mother and brother have bad psoriasis, my DIP joints swell, I have terrible fatigue and one or two of my toes swell. He just said no...no reason, no explanation...just no.
I have one or two red patches that could be psoriasis but I couldnt say for sure but I know people who have been diagnosed with PSA because a close family member has it.
I went to a another rheumy for a second opinion. He thinks it may be either PSA but he is also thinking fibro...eben though I don't get confusion or brain fog and I don't have any of the pressure points. All my pain is in and around my joints. In the past week or so my nails have also turned a bit yellow.
He sent me for an ultrasound on my feet. Only the knuckes of my feet were done and they didn't show much. A bit of fluid on the big toe so I have a feeling he is going to try and say I have fibro and leave it at that.
The first rheumy wants me to have a nuclear bone scan so I'm praying something will show on that so he will agree to treat me with something else. Until then I am walking on crutches and in terrible pain.
I have attached some images . I would love to get some opinions. Not looking for a diagnosis of course just an opinion.
Irishchick, I;m sorry that you're in this pickle! I need to leave right now, but will comment later. Meanwhile, do go to the Newbies Guide and read about Inflammatory Markers.
It's not much of a consolation, I know, but many of us have had a devil of a time getting diagnosed. The problem is that PsA is a quirky disease, and many docs know very little about it. Sadly, some of those docs are rheumies.
Thanks Seenie! It's just good to know that others have gone through the same. How long did it take for your diagnosis? What did you have to go through?
I'll have a read of that post now.
Seenie said:
Irishchick, I;m sorry that you're in this pickle! I need to leave right now, but will comment later. Meanwhile, do go to the Newbies Guide and read about Inflammatory Markers.
It's not much of a consolation, I know, but many of us have had a devil of a time getting diagnosed. The problem is that PsA is a quirky disease, and many docs know very little about it. Sadly, some of those docs are rheu
Wow 15 years. My god I couldn't imagine being like this for 15 years with no treatment :( . How did you endure it. Did your blood work never show anything?
Yes, a long time. But to be honest, it wasn’t severe the whole time. I knew that there was something wrong, but the doc had blown me off so many times that I was coming to the conclusion it was all my own fault and I was a hypochondriac. When they found the erosions in my feet, I self-diagnosed. The doc said “We’ll see.” And we certainly did!
I am very strong-willed, and I have another contributing factor: a very high tolerance for pain. So when I said somehting hurt, most others would have been in screaming agony. A high pain tolerance is very dangerous!
My inflammatory markers have never been out of the normal range, and I have severe disease with a lot of damage. Once, before I was diagnosed, when they were edging close to the “high” category, the doc said they would go down if I lost some weight. My markers were in the normal range when I had my hip replaced. During the surgery, I almost bled out because the inflammation was so bad that the bone, when cut, gushed blood. Apparently extreme inflammation over a long period can cause bone to vascularize. But my inflammation markers, hey, they were fine.
I will have a look at your pics when I’m on my other computer.
Glad you joined us, Irishchick!
Hi there Irishchick, I'm so glad you found us but really sorry you're in our club.
I am one of the lucky ones concerning diagnosis, I guess it was about six months or so, but that is only because I had two pretty damning psoriasis plaques on my knees alongside ultrasound results which showed a foot full of inflammation and bursitis along with other joints coming to the party on a daily basis. And for what it's worth my blood markers are and have always been normal too.
Looking at your nails, I can certainly see ridging and possibly even some very shallow pits. Your thumb nail and mine could be twins ... this is how my nail involvement started for me. And your poor toes look so sore and I see swollen fingers too.
I am seeing so many people saying their docs either look blank or blow them off when they ask if they could have PsA that I think the most valuable advice I can offer is to press your doc on 'why not PsA?'. I think it's time for patients to turn it round on them.
Not sure if you've discovered our book reviews section yet but the book Seenie mentions is *fantastic* and really helps inform our discussions with our docs. It's only a small amount of money but is limitless in value.
It would be crazy for a layperson to attempt diagnosis and via the internet to boot. So we shouldn't really say 'Blinking heck, that looks and sounds like PsA'. But the opinion I'd voice if I met you in person and saw those nails etc. is a different matter.
On the other hand, the first rheumy is sending you for a nuclear bone scan. I don't know exactly know what that is but it sounds expensive ... which rather suggests that rheumy is trying rather than actually fobbing you off.
The drugs you were on are typically given for inflammatory arthritis as you probably know. In the UK Plaquenil is more often prescribed for RA than for PsA I think. In any case, if PsA is what you have, you wouldn't be the first person to fail to respond to these DMARDs by a long chalk. I'm not sure what the state of play is with healthcare in Ireland but the next level of drugs up, biologics, are hellishly expensive. And there was a time when I suspected that a rheumy's reluctance to settle for PsA was because he did not want to incur that expense. It happens. However the spending on the bone scan suggests the purse strings may not be involved.
If I were you I think I'd be looking around for a different rheumy if the bone scan draws a blank. If you decide to go down that road we can help you find a good one.
Irishchick, I've looked at your pictures. I'm no doc, but what I see is horizontal ridging, and maybe some shallow pits. I also see what looks like something called oil staining -- a dicolouration of the nail bed to kind of an orangey colour. One pic is hard to make out, the one with nail polish. Is that a leftover bit of polish on your index fingernail, or what? Really, only a dermatologist could say, but I think all of those things need to be seen by a derm. If your rheum says that PsA is a possibility, s/he will most likely send you to a derm as well. So you may as well line that up. It could seal the deal.
What jumped out at me was your little toe. I think I know a sausage toe when I see one. And a sausage toe is a classic symptom of PsA.
Damage to your hips? How old are you? (Sorry if you've already said and I missed it.)
I'm with Sybil about going on the offensive. And the book that Jules mentioned has an excellent chapter on how PsA is diagnosed. Or rather, should be.
I totally understand what you mean I wouldn’t want anyone to attempt to diagnose someone. This is more of a rant really
An isotope bone scan is where they inject you with nuclear medicine and scan your whole skeleton. I there is an increase or decrease in bone production it shows up as a deep black or bright white.
Twenty eight? And you have hip damage? Dear oh dear ... and what are they suggesting is causing that damage?
Sybil may be right about your rheumatologist, though -- he certainly hasn't given up completely, given the meds you've been on and his ordering the nuclear scan. I had one of those after I was , when my hip started playing up, and I don't recall its being very informative as far as a diagnosis went. But I don't know. (Some clever doc said he thought my hip was AVN. I said it was PsA. It was PsA.)
Please persist until you get a solid diagnosis. Do not give up -- the stakes are high in this game.
They are not 100% sure what’s going on in my hips.
An MRI showed degenerative changes so next week I’m going for an mr arthrogram. They inject a die into the joint to get a more detailed MRI.
I’m expecting a call from the second rheumy in a day or 2 and I’m not sure what I’m going to say if he decides it’s fibro. I might ask him to wait until I get the results of the bone scan
Oh no, please don't accept a diagnosis of fibro. I know it is a real condition, and there are many people with it and they suffer. But it does not explain so many things that seem to be going on with you. And the trouble with a FM diagnosis is, that everything just gets attributed to it, and if that diagnosis is wrong, it could cause delays. And if what you have is PsA, delays increase the risk of damage.
Well, my comment was tongue in cheek really. I mean .... sausage digits, classic I thought.
I've been googling hospitals where you are .... I know you've not mentioned getting a third opinion and I know it's daunting. But anyway, so far St Vincents in Dublin looks interesting going by this article:
I totally understand what you mean I wouldn't want anyone to attempt to diagnose someone. This is more of a rant really
An isotope bone scan is where they inject you with nuclear medicine and scan your whole skeleton. I there is an increase or decrease in bone production it shows up as a deep black or bright white.
I don't think that is going to happen. But if it does, I'd say something along the lines of "Thank you for that opinion, but it does not explain many things that seem to be going on with me == the joint pain, the nail problems, the hip problems, my needing crutches. I really think I need to have someone else confirm that opinion, and rule out other diseases such as psoriatic arthritis."
