Does this sound like PsA?

General
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Hi, everyone! I came across this forum a couple days ago, and have been really reading through a lot of interesting posts. It seems like you all have a lot of great insight, and I'd love for you all to help me out if you have the time.

I am currently in West Africa, in a very underdeveloped country, doing development work. I am originally from the US, the Northeast/New England in particular. FWIW, there is limited competent medical care here, so that is partly why I'm seeking advice on this message board.

I am a 24 year old male. My basic history in regards to PsA (if that's what it is) is this: this winter, maybe around December-January, I started to develop what would turn out to be psoriasis. I first got a patch on my stomach, then about 7 more spots on my arms and wrists. I was initially misdiagnosed with ringworm (oof) by my GP, but after it didn't go away in a few months, I visited a dermatologist, who diagnosed me with psoriasis and gave me steroid injections to make them go away just in time for my departure from the states (May).

Some time around March, I started to develop really bad shoulder pain in my right shoulder. The pain was both between my shoulder joint and neck, and also in the general trapezius area, like between the neck, shoulder blade, and shoulder joint. I thought it was caused by having to carry heavy garment bags overhead (part of my job on the weekends), so I layed off it... the pain generally would subside a bit when I wasn't overworking it anymore, but there was always a constant dull ache there. Starting in May, I'll have pretty significant flare-ups of the pain, where I'll have 3-4 days every week or other week where it just HURTS - to do anything. Sleep, walk, lift my arm up, write, type on a computer, just anything that uses my arm/shoulder at all. When I'm not in a "flare up", there's still the dull ache there. It is always worse at night. Sometimes I wake up with a stiff shoulder, sometimes it's just back to the dull ache.

In June/July, I visited a hospital here in W. Africa about my pain. I had several x-rays done as well as an echograph (though the echograph focused only on the shoulder joint, not at all into my back/shoulder blade/neck where a lot of the pain was). The x-rays didn't show much, and what the echographer discovered from his (limited) exam was bicep tendonitis, which doesn't really affect the pain where I'm feeling it. They told me to take Ibuprofen, which sort of helps ease the pain, but just tackles the symptom and has no bearing on the underlying problem, which has existed for 7 months (talking just shoulder pain here).

In hindsight, I've had really bad growing pains when I was younger. I would complain to my mom about it all the time as a kid, and would just take advil/tylenol. My joints feel fatigued occasionally. I have to crack my fingers all the time, because when I don't it's just uncomfortable. I also crack my knees, elbows, and ankles multiple times a day because - like I said - it just feels too uncomfortable, and cracking them eases some pain. I'm not sure if this is really arthritis, though, or if it's just in my shoulder and these are irrelevant.

I don't have "fatigue" per se. I actually sleep really poorly, but I have delayed sleep phase syndrome, where my typical sleep phase would be maybe 4 AM to noon (my biological clock is just super off). Still, since I have to work in mornings, I force myself to fall asleep earlier sometimes. I don't take any meds for this (or any meds in general).

I'm overweight, but would consider myself very healthy, and I'm also very active. I walk many miles a day, have done lots of yoga and dance over my life, don't work in a chair... yeah.

So anyways, this has been bothering me a lot lately, and I really want a diagnosis. I have been speaking with the medical officer in charge of my country in my organization, and she set me up with an orthopaedic surgeon (no idea why) who didn't even touch me or look at my shoulder/back in his consultation, but just gave me a muscle relaxant and prescribed me more physical therapy, which is just massage here. I've been going to "PT" but it hasn't been doing anything for me.

I know if it's a rheumatoid issue - RA, or PsA - then my development work will have to end, as I can't be here with a problem that is debilitating and requires frequent consultations with specialists not available in this country or medicine that's inaccessible here.

On Tuesday, I'm going to confront my medical officer about how I think I'm being mistreated and how I don't like that nobody is trying to address the PROBLEM underlying my pain, but rather is just trying to stifle my symptoms. Do you think it's likely that I have PsA? It seems to me that a lot of the symptoms fit, but this is just after researching a few days. What do y'all say? :/

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Hi fearlessly! It's not uncommon for people who wind up being diagnosed with PsA to have a similar type history, of what may be tendonitis or other soft tissue type problems, without any real inflammation to start off with. PT can be really helpful at this stage, as it can help to strengthen around the joint, but not likely to be much help if it's just massage (although that sounds good too).

For diagnosis they are going to be looking for multiple swollen joints. If it's "just" your shoulder, diagnosis may be in your future, but not now. Have they suggested a steroid dose pack to see if it alleviates your symptoms? Don't go on prednisone for longer term, but for short bursts it can be helpful.

You're in a tough situation. For now, it sounds as though treating the symptoms may be your only option until you return to the states. It often takes an extended time between onset and diagnosis. And treating symptoms is typically all that goes on during that time. You're certainly right to be looking at PsA as a possible diagnosis, since you do have the psoriasis. I wish you luck with this.

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Welcome, fearlessly! I hope that you will find this a good place for support and information. I can certainly see why you might suspect PsA. As Stoney says, many of us here who’ve been diagnosed have a history that sounds a lot like yours. That said, we are not rheumatologists, nor do we play that role on the internet!

For many of us, symptom relief was the first step, you know, ibuprofen and such. But without a diagnosis from a rheumatologist, you won’t be getting much further than that and anti-inflammatories (NSAIDs). As Stoney asked, has anyone suggested prednisone or steroids? (These drugs have serious downsides, so long-term use is a really bad idea.) But, if prednisone or a steroid alleviates your symptoms, it is a clue that your pain is caused by inflammation. The first rheumatologist I saw prescribed prednisone as a diagnostic procedure. It worked like magic, and that moved us closer to a diagnosis. I’ve avoided prednisone ever since because it turned me into a screaming lunatic. But my pain was gone.

Having PsA does not mean the end of life as you’ve known it. We have many members who we rarely hear from because their disease is well controlled and they are too busy doing other things to hang out here.

Being in a remote location with a shortage of expertise close by, it might be worth investing in the e-format of the book that I recommend in book reviews (above). It is technical enough that a concerned doctor, were they unfamiliar with this disease, would find it enlightening.

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I think it's a fair call that anyone with psoriasis and unexplained joint pain should have a consultation with a good rheumatologist or excellent dermatologist.

As you may have read, there are no specific lab tests that will prove you have PsA. It's usually not a quick, direct, or simple diagnosis. If you don't have access to a rheumatologist in Africa, when will you next be back in the U.S.? It can take time to get an appointment (I waited four months to see my current rheumatologist) so you might want to look into that sooner than you'd think.

My experience with orthopedic surgeons is that they don't know much about rheumatology.

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Thanks for the speedy replies, everyone! I'm here for two more years, less I get sent home for this. As I said, the reason why I'd go home would be more inaccessibility to treatment and doctors (if PsA, a rheumatologist). I can still function (albeit in discomfort).

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PS One interesting fact about PsA is that the inflammation markers in your blood may not show anything out of the ordinary, even though you may have inflamed joints or soft tissue. Don’t ask me why! But if someone does a blood test and says it doesn’t show anything so it can’t be inflammatory arthritis, it means nothing. About half the people with PsA have inflammatory markers that are normal or close to it. And some of us (like me) have severe disease. Just sayin’ in case somebody decides that there’s nothing wrong with you because of the blood tests.

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If you can’t go home for a rheumatologist visit maybe they can send you to a nearby country for one? I live in South Africa and we have a couple of rheumatologist all over the country. I was diagnosed quite quickly once I saw the rheumatologist as I was apparently a ‘textbook case’. I took along all blood tests and X-rays. Maybe that is an option for you as you could probably fly in and out on the same day? What I can say is that I have had a lot of tendinitis. As far as I understand the PsA ‘attacks’ ones tendons so that sure fits. But as everyone has said you need an informed doctor for a diagnosis. The steroids are a great suggestion - I am having a major flare up atm and the doc took me off all drugs except NSAID and painkiller. I got a shot yesterday and I have gone from not being able to walk in the morning to being able to overnight. So if possible really try to ask for that. In what country are you currently?

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Nicolene, I'm in Cameroon. With my org, if they send me out of the country, it would either be to DC or Rabat, but it would be to both be diagnosed and get up-to-speed with recovery, and it would have to be within 45 days. If there's something unavailable in this country that I would need for medication, then they'd have to send me back home (permanently).

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Hi fearlessly,

I'm really sleepy, it's getting late, so I might have missed if you mentioned any sort of fingernail/toenail involvement. Did the Dr look closely at your nails? If they don't have obvious deformities, look across them at an angle to see if there is any pitting. Even slight--it looks like pin pricks. Also, I'd say you have a lot of classic PsA symptoms. The stiffness and "icky" tightness or whatever that makes you feel like stretching or cracking your joints--definitely sounds familiar. The tendonitis--yep. Dull aches and sharp pains--PsA is all that. Joints locking up if you aren't in constant motion. Like the tin man. I never took much for pain--didn't want to doctor much--hate pills--hate appointments. Really only went to Dr for yearly physical and to renew my psoriasis meds and a few things in-between. At first I refused treatment when a rheumy told me I had PsA. That was in 2008. I finally gave up dealing with the PsA and worsening psoriasis (which I had had for nearly 40 years) and after declining the first med my rheumy suggested, sulfasalazine, I joined this group and shortly after--this July-started Enbrel. I got really lucky-Enbrel worked with the first dose! I should mention I did have a few short (5 days) doses of prednisone along the way, and it did make me feel great-like, as in high on life--for a short period of time. But as a few people mentioned above-beware, prednisone can make the problem worse and cause other problems. I'm glad I was told that, because I was begging my Dr for more prednisone before I went on Enbrel. I'd be happy to see you get a biologic like Enbrel and get well. I'm glad, also, that the only other med I take is a small dose of amlodipine for high bp. Fatigue is a usual symptom, and I've noticed a huge increase in my energy and alertness since being on Enbrel, but I'm sure its not necessary to get a diagnosis. I don't have any if the inflammatory markers in my blood tests--you just need a good, open-minded Dr.

I hope you get a diagnosis soon. Not that I wish PsA on anyone, but with your symptoms, getting on a biologic--if it is PsA--could make a world of difference.

Good luck!

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Hi Fearlessly,

Any chance you could get to Paris or Brussels and see a rhuematologist privately?

With only one joint group really playing up, and not much fatigue, the probability is that you will get fairly conservative treatment wherever you are, if indeed they decide it might be inflammatory arthritis.

So the suggestions made about a steroid injection would be the most likely course of action, and some people find they work for many months.

If you want to stay in Cameroon I’d be surprised if they didn’t have garden variety oral steroids, methotrexate, and sulfazalazine - they are certainly going to have plaquenil! (Which of course doubles as a PsA med and an anti-malarial - if you’ve ever taken Malarone, then you’ve already tried it).

Enbrel and Humira, I agree with you - I don’t think so. I carry Humira into Burkina Faso but I’m only there a few weeks at a time.

I really think it would be worth trying to get an appointment over a couple days break - with your current description you may not find a Rheumy in a rush to prescribe anything you can’t get in Cameroon anyway, and it would be a real shame to cut things short if you don’t have to.

Whether you want to be in Cameroon on drugs that are immunosuppressive is another question entirely, though then again, its all perspective - I know in Burkina I’m probably more likely to die of a car accident!