You guys are so knowledgeable, I could really use your insight. I was diagnosed based on scalp psoriasis, wide spread pain (I would describe it as tendon pain), one very slightly swollen toe, and a slightly bulging/swollen Achilles’ tendon. I was prescribed methotrexate, which I just recently started, but I’m still questioning my diagnosis. My rheumatologist decided on the PsA diagnosis when he saw my Achilles. It is hardly noticeable though… it just bulges a little when I flex my foot. It hurts, but not badly… I would describe it as irritating more than truly painful. It feels tight and almost like I have a brush burn inside. I also have heel and foot pain. Anyhow… the Achilles MRI was completely normal. I also just had an ultrasound and it too is completely normal! I can’t understand why I have pain and swelling yet nothing shows up on imaging. I understand why X-rays would be negative, … but shouldn’t something show on the MRI or ultrasound? I feel like I’m losing my mind and this pain is all in my head and I’m really tempted to not take the metho because I’m not convinced I have PsA.
with some people PsA manifests as inflammation of the enthesis, this causes the pain you describe. If there is no indication of inflammation, it could mean that the MTX is working. If you are new to the disease, you might not have degenerative changes yet. Probably is best to continue the MTX. Are you still in pain?
Hope everything gets worked out!
I was exactly like that when I was first diagnosed and I really wanted not have it. But after basically having a tantrum for the better of a year, I realised that really I did have it as the pain never went away and really wasn’t in my head either. So I decided to buckle down and be treated for it. In that year too I went from having no damage to be seen to having three different joints now showing the beginnings of some erosion.
So it didn’t show up for me at first just like it isn’t for you, but then it did. Keep talking to your doctor and build up a trusting relationship so it makes better sense for you. And you’re not losing your mind either. Honestly you’re not.
So the MRI was just of the Achilles? It does seem odd that nothing showed up. However from what you say it does sound as if you have a fair collection of classic PsA symptoms.
I’m exasperated with imaging too but I’ve decided to play the long game and try to understand it more over time rather than expect anything of it at the moment. It strikes me that doctors have a more complex relationship (can’t think of a more appropriate word) with imaging than we think.
A couple of years ago I fell and injured my knee which had long been badly affected by PsA. It was extremely painful & I couldn’t bend it or lift it. I had an ultrasound which showed that the tendon was intact. PsA doesn’t always get doctors excited, but this injury did. They decided that it had to be torn regardless of the ultrasound because I couldn’t lift my leg and they started planning quite a fancy repair. All marked up and ready to go to theatre … and miraculously my leg rose skyward and I scarpered double quick despite the injury.
Thing is the docs at the hospital included me much more than rheumys can or do and the planned surgery was the result of much deliberation. Conclusion: observation and knowledge can trump imaging, sometimes rightly, sometimes wrongly. But I think it would be risky to jump ship based on the ultrasound alone.
If you felt that you had PsA and the US convinced a rheumy that you didn’t then you’d have a problem. But with the symptoms you have and treatment underway the imaging could be seen as far from disastrous. If I had to chose between a competent, proactive rheumy and super duper imaging I know which I’d go for. Over time I hope to get a good discussion going with my rheumy about how imaging can help me and maybe get more from US, x-rays etc.
Hi Jon, yes the pain is pretty much daily… worse in the morning, gets better as the day goes on. It’s not debilitating though. I have only taken one dose of metho so far, so I’m sure it couldn’t have helped that quickly. Would enthesis issues show on ultrasound?
Sybil and Poo… thank you for your words of support. I really appreciate you taking time to share your thoughts and experiences. It’s so good to talk to people who understand!
Hi ugly feet. Your description is CLASSIC for PsA. My doc has me fill out a “daily functions” chart each time I go in. There’s a measurement of morning pain and stiffness and how long it takes before it passes. Early in my treatment it was HOURS before the pain and stiffness went away. Now it’s down to portions of an hour.
If MTX is prescribed then keep at it. I know you know this, but remember that it isn’t like taking an Advil or three for a headache. This stuff takes time. It has a LOT of work to do in your body. Help it my guzzling water, taking your folic acid as prescribed and trying to eat as healthily as you can.
Do try to engage your doctor in a conversation about your confusion with imaging. But I’m with Sybil, one US doesn’t paint the whole picture. My fingers are visibly deformed with knots, joints that are turning, etc. But I’ve had X-rays and MRIs and the results are all “normal”. I don’t want erosions, but I’m always confused how my hands and feet which appear physically altered come back with a “normal” stamp. If they feel and look this bad how come there’s nothing wrong with them on the imaging? I have no idea!!
My advice is to NOT waste a second worrying about US results…
I’m not sure that US is quite ready for prime time. A lot of docs won’t use it (especially stateside) My doc for example is one. He says that a positive test is meaningful a negative means nothing. He goes on to say (understand he is 75, cynical, and has PsA) that when it has been positive, he didn’t need an US. He could see, feel, and palpatate the problem. In his opinion it is merely a way to increase office billing (Rheumie don’t have many billable procedures)
The most dependable measure is (get ready for it) is to treat the symptoms (meds) and see what happens USUALLY this is a starting run of predi.
In any event the only clear studies I can find indicate US id primarily only effective in finding discrete bony destruction (erosions) related to RA. This isn’t anything to do with PsA.
Perisynovial inflammation which is a specific finding of early PsA, doesn’t show up.
This Study says it all. One statement sums it up: US does not depict the specific changes of PsA,
In any event unless they did STIR sequences on the MRI not much would show up… (especially later in the day.
@uglyfeet… my understanding is that methotrexate can take weeks to months to get noticeable benefits, also the dose required can be different for different people. If you tolerate any side effects well (and if you don’t, ask your doctor about folic acid, which I needed to increase) keep with it… do however keep in touch with your doctor and be sure to tell him/her your results with it (whether results are good, bad, or indifferent) that way they can decide if you need to increase/decrease dose or try something else.
From what I have read on this forum it seems having a diagnosis is a good thing (as hard as it may be to hear the diagnosis) this thing CAN be treated, and with the correct treatment and time the majority of us can gain significant improvement, unfortunately it takes time though, and prevent/slow damage to joints if the treatment is started before damage takes hold.
I am still new to all of this myself, so maybe someone with more experience can add to my comments. I am sorry to hear that PsA has found you, but in finding this forum you will find the support and information you need to help you through it!!
Best of luck with the methotrexate, do keep us updated with your progress!!
Try to enjoy and appreciate the good in every day (no matter how small), it helps you to smile even through the roughest of times.
Normal CRP, normal ESR, no HLA-B27, normal MRI, if I’m so damn normal, why does it feel like I’m wading through mud in the morning, I’m tired if I don’t sleep for 12 hours a day, and it hurts so much? It’s frustrating, isn’t it?
Know that your story is, LOL, “normal”
On the flip side, you have morning stiffness, swelling, and tendon pain, none of which is in your head, and all of which is classical for PsA.
Keep persisting with the treatment, the most likely outcome is you’ll prevent damage and get much of your old capability back, but don’t be afraid to let your docs know how you are feeling as well, and raise any new symptoms that pop up. My Rheumy is not a listener, so I got a psychologist for that part, and it was one of the best things I’ve done.
I was on 20 mg of prednisone for 5 days and I have never felt better. No pain, more energy. Is that evidence of PsA (or something inflammatory)… since it worked so well?
Also… why does having the MRI later in the day make a difference?
Thank you for the information and the study link… very interesting. I’m learning so much from you guys!
Yes, it is very frustrating!! Thank you for sharing that you are also “normal” lol… it does help to hear that others with a confirmed diagnosis also have normal blood tests and imaging. You mentioned fatigue and needing to sleep a lot… that is what I hate most about this. I miss the old me that had so much energy! Have you found anything that helps the fatigue?
Physical symptoms with PsA improve with movement, and get worse without. (As is the case with the whole group of Spondyloarthropathies.) We are horrible in the morning and better after we “unfold” how long it takes to unfold has a lot to due with the diagnosis and treatment. Response to predi pretty much nails the diagnosis of a
Spondyloarthropathy. Which one it is frankly isn’t relevant, the treatment is the same. As far as the MRI, you are more likley to show more inflammation after a long period of inactivity thus the time of day connection.
Oh yes, I forgot to mention I have “normal” tests too, including x-rays (haven’t had any scans yet) and the locum rhuemy feels it is definitely PsA. Am also plagued with wicked fatigue.
The only time I “feel” almost normal is on prednisone… at least with the prednisone I am able to function and don’t need nana naps for days . Thank you for clarifying that @tntlamb, I kinda felt the fact that I did respond well to prednisone was a flag to the docs
I’m thinking inflammation varies for all sorts of reasons(?). Recent ultrasound showed active inflammation in my right wrist, in which I have no noticeable problems. Sometimes my problem joints burn and sting and that seems to equate with inflammation to me, but I doubt anyone’s going to do any imaging after 10pm which is when that mostly happens. I still don’t really know what a crap shoot is, but imaging seems to be coming under that definition.
I understand your frustration. My Rheumy only uses a certain type of high-tech Ultrasound imaging in their practice, as she says most ultrasounds aren’t capable of seeing what the Rheumy’s NEED to see for aiding in autoimmune diagnoses. They have one in their office and don’t bother sending people elsewhere, as they consider “elsewhere” to be a waste of time.
For me personally, it was an inflamed wrist that FINALLY got me my PsA diagnosis. This was after 3-4 yrs of suspected PsA, with only morning stiffness, a strangely deteriorating knee, and strange back pain as problems…all of which “could” be blamed on other things/injuries earlier in my life. My orthopedist for the knee kept saying I wasn’t normal though (considering age, activity, weight, strange deterioration/connective tissue issues, etc), and that something autoimmune had to be occurring.
The day I went for my 6-month checkup was actually a good day too. My wrist was barely bothering me, but the Rheumy could see the inflammation across the room. Apparently my ultrasound from 2 yrs before showed minimal inflammation (some, but not much). I had an US on the wrist again the following day that showed moderate inflammation. She thinks my high pain tolerance was masking the problem. Now that I’ve been on meds for 9 months, it’s amazing to see how normal my wrist looks with no swelling! I had forgotten what “normal” is supposed to look like. Again though, it shows how different we all are, and how pain and appearance simply don’t seem to jive together sometimes.
So I guess I’m curious now as to how many Rheumy’s are using the “high-tech” ultrasound for diagnosis (??) I’m in the central United States and not sure what the standard is overall…
The official name for this type of US is "muscular skeletal diagnositc ultrasound, they als use dopler to show the inflammation. I have been getting ultrasound imaging for a couple of years, the tech is used by a few doctors in the area, I had it done a couple of months ago, just before changing doctors, my new Rheumy refused to even talk about the findings, saying the imaging reports are not standardized like MRI… I told her, that one of the reasons I picked her, the bio said she specialized in the US imaging, she just brushed it off. The reports have been consitant, showing not only enthesis envolvement, and synovitis, but also nerve entrapment, and a slap tear in my knee. Next doctor I pick, I will ask before the first appointment, if they do diagnostic US, if not, it’s a no go…
Thanks for sharing this info, Jon_sparky. I like knowing as many details as possible, and this helps tremendously.
There are common inflammation lab results and then there are others. If have moderate moving towards severe inflammation but the standard labs for inflammation were negative. When I was being diagnosed the RA factor also was negative and the Dr. initially just thought I had osteoarthritis - you can see the finger joints noticeably distorted and swollen hands. I persisted and he thought things over. He ordered a bowl-inflammation test (blood test-expensive) and it was positive. MRI confirmed the errosions, joint deteriorations and osteopenia (precursor to osteoarthritis). So there are different ways to find the symptoms but each case is unique. Diagnosing many conditions is a process of evolving information, rethinking and sometimes luck. The truth of the matter is, even when you have a good doctor you still have to advocate for yourself and become as knowledgeable as possible.
Hi,I had the same experience.One of the characteristics of Psoriatic arthritis is that it DOESN’t show up on radiology studies.Best of luck to you.