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Living with Psoriatic Arthritis (PsA)

Am I just old or does any of this sound familiar?


#1

So, I’ve browsed a lot of PsA boards since I was told I possibly have PsA by a rheum last year. It’s so frustrating that there is no real way to diagnose until you have damage for the most part. Tons of smaller issues and sister diagnoses of Hashi’s finally made my GP send me to a rheumatologist. At first appointment was shocked to hear her bring up PsA. I do not think I have ever had psoriasis. I have itchy crusty ears but Derm say just dermatitis. She doesn’t diagnose it but always says “Let’s pretend you have PsA” meaning she really suspects it. Apparently my recurring rib pain (one of THE most annoying problems I get over and over, worse the last few years) really caught her attention and that my mom had a patch of psoriasis for many years. So, I don’t know. I feel bad to even post as I am not generally debilitated by any of my symptoms though the rib pain can really cause me to slow down and now this year this random ankle/leg pain in left leg can do so intermittently. My symptoms seem SO random and not nearly as severe as everyone I read about. I definitely have some osteoarthritis in areas, have the finger bumps common with age. I am 54. These all started around 4-5 years ago. Some of this may be due to menopause, some may be related to IBS even I think. I’m just wondering if people think I am just “aging” and being crazy to continue seeing rheum. When I feel ok I think I am crazy or a hypochondriac. Then something starts bothering me and I am worried I’m seriously ill. lol. Anyhow here is the list of things and I am just wondering if anyone started out more mildly like this. Much of this started in my 20s even (IBS and hip pain). I think the biggest thing is I do not see swelling. I never have swelling that I can see, even if I feel swollen. It seems like everyone has visible swelling. It makes me think I am making a big deal of nothing. Only occasionally has rib pain or shoulder back pain been strong enough to bring me to tears. Usually bouts of pain are just highly aggravating/annoying.

Sorry this is so long. But … am I crazy? Is the rheum crazy? I don’t feel bad enough to do the heavy meds, though she has suggested methotrexate. I’m so confused. I’m writing today because I really had bad leg pain this last week, especially alarming this weekend. But it’s much better today and now I think I am being alarmist again. Am I nuts?

Symptoms:
• Gritty eyes, red, heavy painful, object in eye feeling, sometimes looks like jelly in corner, water, water, water
• Itchy skin, only goes with antihistamine all over especially hands and feet; Dermagraphism per allergist
• Dry itch ears, wax build up frequent
• History of IBS
• Muscle pain, cramping and spasming; often very sudden, even back knots, physical therapy and massage for the worst times
• Feet pain that comes and goes, better after being up and about. Feels like they are cracking like ice and I hobble around for a while. Just a few days at a time here or there
• Hip pain (annoying and not often 20s 30s, lately way increased)
• Tinnitus
• Lower back (way low) tingly burny sensation (new in last two years. Mostly happened last year); comes and goes
• 2 years again sudden severe left shoulder spasm and back pain. Received therapy went away. Neck shoulder pain always common, but computer work and chest add to that
• Lump feeling bottom of left foot base of second toe, comes and goes, not very painful, annoying though
• “Warm/heat” spots right ankle outside bottom left foot, sometimes up calf, random; comes and goes
• Tender scalp, derm says inflammation of some kind, no dandruff or anything seen; comes and goes
• Increased sinusitis; discovered many allergies never had previously
• Burning mouth, lips (better since salivary duct cyst removal, still happens, esp if eat sugary things)
• True salivary duct cysts, not mucoceles; apparently rare; may have nothing to do with anything
• Jaw joint pain(sour), under ears, sides of neck tender, alternate at times very comes and goes
• Lump feeling when swallowing, GI doc said “it’s stress”. But I don’t feel that stressed. Very random. No one concerned about it
• Full feeling in ears or ear pain, no infection, possibly sinus related
• Thick saliva, sticky gums, lately some sticking in throat, so causes choke coughing
• Tons of crowns; I floss and brush ASSIDUOUSLY. (Family seems prone); just discovered periodontal disease, deep scaling and water pik add seem to be handling it well
• Cold especially hands, both; eh.
• Achy hands comes and goes
• Mild elbow and wrist pain; comes and goes
• Sudden sleepy tiredness, can’t hold eyes open, yes at bedtime but never happened before last couple years where so sudden and harsh
• Periods of “hit by a bus” soreness all over with fatigue
• Very small nodule on thyroid.
• Right side rib pain last 4-5 years off and on. Can get severe, last months and suddenly go away, sometimes just mild and bruise like; couple times a year. This year seems to be my ankle instead; thankfully have not had both at same time
• History of sebaceous cysts, fibroids, breast cysts; hysterectomy due to fibroids 43
• History of migraines since puberty, since menopause few but lots of other types of headaches
• Periods of weak feeling, shaky malaise type feeling with muscle pain. Random. Can last a few days or just a day here or there. Random.
• Since Feb 2018 left ankle sore off and on, more on that off. Usually just a sore ache just above ankle bone, sometimes extends all through calf, triggers knee. Calf can get extremely tender and painful right at the big part, often sore ache along shin bone. Usually not debilitating but occasionally experience 3-4 days of extreme annoyance, one day of really bad and then settles down, usually after naproxen.
• Both sisters diagnosed Hashis
• Mother was hypothyroid since late 20s, never hashi’s tested.
• All my bloodwork clear of markers of any kind

Am I just old?


#2

You’re definitely not just old. I don’t have time for a long reply at the moment, but I’m also wondering about Sjogren’s syndrome for you.


#3

Bloodwork says no. Actually that was honestly what I thought too. But no positive tests. I think that was why I was so shocked she brought up PsA.


#4

Gosh, your rheumy knows how to make appointments ‘fun’!

You know, it’s great that you don’t have swelling and don’t generally feel debilitated. But that’s not a reason to tell yourself that you’re crazy, or that your rheumy is, even if her way of expressing things does sound a little unorthodox.

Quite a few of the symptoms you mention are ones that come & go for me now that my PsA is well-controlled. I wish I’d got it diagnosed & treated before it became severe & knocked me off my feet, there were a few lost years there. Perhaps starting treatment now would mean you’d do even better than I’m doing.

Oh, and I’m wondering how feeling like you’ve been hit by a bus plus fatigue comes under the category of nothing much! Dunno if some of this is age-related, getting older does bring a certain amount of discomfort but I suspect it’s more that you’re a tough cookie who has got way too used to being, actually, very uncomfortable!

It all sounds rather PsA-ish to me. Blood work isn’t really relevant with PsA, there are no conclusive blood tests. And in my experience, if & when inflammatory markers do hit the roof, that’s the beginning of a really nasty time.


#5

You can be seronegative for all sorts of conditions. That includes Sjogren’s.


#6

Thank you! Yeah, I’ve never been old before. lol. Well, that is what I am kind of wondering, maybe I’m just finding it early and if so that is good. I DO know I do better if I avoid gluten and eat clean. I have had three different types of doctors say I probably have something going on that may not have fully flipped as it were. My GP, My ENT and my Derm have all said that can happen eventually and that may be where I am at. Still sometimes I think I am making a big deal over hitting post menopause. Your post is comforting that I’m not nuts for pursuing this. (Yeah, she is a pretty good rheum overall I think. I did call this time when my leg went nuts. They set up an xray and of course it was like 80% better by the time that came around. We’ll see. I have an appt. Thurs.)


#7

Yeah, I have heard that. That one might be a bit harder to pursue unless I really run dry as a well.


#8

Oh, my other question there is that I am SO reluctant to start a medication without an actual diagnosis or really bad symptoms a large percentage of the time when I see all these commercials which such terrible side effects. :frowning: So hard to know.


#9

I think I’d be okay trying the meds if PsA or another form of inflammatory arthritis was considered very likely. How about giving your rheumy a bit of a drilling … how strongly does she suspect PsA / inflammatory arthritis?

However I have been on Mtx for 6 years without problems. Some people get side effects while others don’t. It’s easy for me to say 'cos I’m so familiar with it now, but personally I’d recommend giving it a try to see if it helps, if that’s what your rheumy recommends.


#10

I don’t know… if they saw any sign of damage starting I would be more inclined. Without that or without a lot more percentage of time at my most uncomfortable it makes me really nervous. It really sucks not being able to be sure about anything. I have pushed some for clearer parameters but they do not seem able to tell that I am ACTUALLY a PsA patient. they just suspect it could be. Ugh. This is where I get really frustrated. And like I said, I do not seem to at all have the same level of discomfort of people I read. Just once in a while is something really bad. Maybe once a year at a very high level, tear inducing type pain level.


#11

Is there such a thing as mild cases? Where you have occasional pain but not damage? Or is that something we don’t know because then people don’t really pursue it.


#12

I had really itchy, dry insides to my ears for years before anyone thought It might be psoriasis. Even now I think it was more the small patches I developed elsewhere that help d get to a diagnosis. I got the impression that the rheumatologist wanted the GP to diagnose the psoriasis so they could then feel confident to give a definitive diagnosis of PSA. Having said that I did also have sausage fingers and toes from early on. I also had raised CRP levels throughout.

Also early on all I could really verbalise that it felt like I’d been ‘hit by a bus’ or run over so I can empathise. PsA seems like a nightmare to get to grips with.


#14

Yeah, I can’t say I ever have any kind of swelling. Like even this weekend when my leg felt like it was dying, it looked as normal as the other as far as I could see. I have some gel thing I got from the Derm that does sooth my ears. I specifically asked him if it could be psoriasis and he did not think so. I’ve itched for years all over with no kind of visual thing. Derm says dermagraphism. For a couple years I had to take Zyrtec every day (for a little while twice a day). Then it got better and better and now I just need it on occasion. But there is never anything visual


#15

There are lots of questions here, so I’ll stick to a few I can help with.

Swelling; my only visible swelling was at onset when I was in pretty severe pain. My knee was so inflamed it was red, but still only looked slightly swollen. I could detect swelling though - couldn’t get rings on and off, bra strap leaves an indent for two hours after taking it off etc.

Stiffness relieves by light movement was, and still is, a better measure for me (my CRP and ESR are never raised either), as well as fatigue. Pain is not a good indicator for me because it can easily be quadrupled just because I got a bad nights sleep.

I have the gritty eyes, and get blepharitis, when I am flaring. My ANA is not negative, but neither am I diagnosed with sjogrens.

I’m guessing you are here partly because it is finally getting to the threshold where you want to do something about it. So here’s the thing - almost all inflammatory, autoimmune diseases that involve your joints have the same treatment process. Seems like your Rheumy thinks you have one, and it may be PsA. But it wouldn’t matter if it were seronegative RA, or any other number of seronegative inflammatory arthritides, the treatment is generally the same, as long as you have excluded other things that might masquerade as one.

So, if you feel near ready to take the next step, then talk to your Rheumy about what they’ve already excluded (they probably have a long list they haven’t bothered to discuss with you yet), make sure there is nothing missing (eg in your case, you’d want coeliac disease excluded), and then you can know that regardless if it is PsA, or any other inflammatory A, where treatment needs to head.

There are plenty here who will emphatically advise you not to wait till the damage is done, in my case, it hit me like a ton of bricks when I was relatively young (mid-30’s), so I couldn’t miss it - but it still took a whole year from when I felt frankly disabled, to getting on a med that worked for the arthritis. Better to do that when things are “not that bad” than to be terrified and thinking about how to modify your house for a wheelchair. And when it works, boy it makes a difference. 7 years later, I’m writing this after finishing a dressage lesson (horse riding) - give yourself that opportunity too!


#16

I’m like Jen where it hit me like a truck road traffic accident. So it was obvious from the start I had an inflammatory arthritis going on. I did have severe psoriasis as a teenager but had none then and wasn’t instantly diagnosed with PsA either. Always had itchy ears though. And still do. And that rib pain, yes that’s horrid and I have it too. Presently I have a foot and ankle join my party when it never did before either. PsA loves to move around and surprise you. And I’ve had horrid teeth issues as well.

It wasn’t until a year later, a year I took no meds either than any damage showed up. I did however swell up from time to time but it never lasted. The pain issues could sometimes be unreal but again never lasted. I was also just post menopausal which didn’t help either. As we know lots of dry issues come after the menopause.

I truly took no notice of blood tests and still don’t. Initially I was RF negative and now I’m positive. Go figure. For me the blood tests only matter to see if the meds are affecting liver and kidney functions.

However I’ve had wonderful times when it was clear the meds were working. Presently they’re not so I’m back in the waiting game.

And so many people on here and elsewhere have had this disease creep up on them, slowly over years. And there are several DMARDS out there some which don’t have the potential side effects of mxt either, so I wouldn’t be overly fussed about it. You could be someone for whom it works well and with little or no side effects.

So if I were you, I’d sit down and have a good grilling with your rheumatologist. ‘Pretending you have PsA’ wouldn’t cut for me but confirming it was thought I had some form of inflammatory arthritis would. The treatments initially are all the same anyway, so that’s what I’d want confirmed or not as the case may be.

Waiting for damage to show - you really don’t want to do that if at all possible. In the year I refused any medication, I then showed up with some damage which possibly I could have avoided. Those who spend years asking for a diagnosis as it crept up on them will tell you when the damage was discovered it was pretty severe.

The med regime does look frightening but actually it’s not really, even if I was one where it seemed mxt truly hated me. Another DMARD just loved me and I it.

Go have that grilling with your rheumy on Thursday.


#17

Definitely! You are so sweet! You seem to downplay your ailments even though you have such a huge range of symptoms. Most of your symptoms are really common in PsA, and a few might not be PsA related. To me, it sounds like PsA, and your rheumy is on the right track. No, don’t stop seeing the rheumy!
My PsA was diagnosed in my early 50s as mild. I felt lucky and had no intention of taking any meds. My rheumy wanted me to start with anti-inflammatories. The pain at first was more of an annoyance than severe pain, so I didn’t feel anti-inflammories were necessary on a daily regime. Then sulfasalazine. No way! MTX. Nope! Things kept getting worse over several years. (I did have active psoriasis for over 30 years, so my PsA diagnosis wasn’t questioned.)
This is where you are, it seems. You’re questioning it because it doesn’t seem severe to you and you don’t have psoriasis. I hate to be the bearer of bad news, but what’s going on could actually be causing damage to your joints that isn’t real noticeable yet. The symptoms you’re having are real—they can come and go and change in intensity. I feel sad for you. I spent years in denial and questioning what was going on. And pushing through…
Have you had any prednisone yet?
Prednisone made me feel on top of the world…if prednisone works, that’s a good indicator of inflammatory arthritis.
As far as the swelling, it can be subtle. I didn’t know my feet were swollen until Enbrel made them look “skinny” again!
Do you try ice packs in your ribs? I’ve found ice/cold packs to be very helpful for my stiff back.
You seem so much like many of us who had slow progression of the disease. I’m hopeful that you’ll get a firm diagnosis and a biologic will make such a drastic improvement, you will know your pain was real and not imagined or symptoms of old age.


#18

Sounds familiar. I only had “dandruff” until the dermatologist said it was P. Now that the PsA has gotten bad, the psoriasis is coming out on one arm.

The jaw pain sounds familiar. Initially I had jaw pain. Right in the join and around the ear. Wanted to pull my teeth out.

Sounds like you may have some other things going on with the PsA.


#19

Autoimmune disease is grim in any form! PsA, with no definitive test and so many possible manifestations, is certainly no exception.
My history of its onset is like so many others’ in this thread. I had many symptoms over a five year period which only became relevant after I was diagnosed: a summer with an incredibly painful big toe, a toenail which became suddenly prone to ripping off in its entirety, a baby finger which became permanently crooked, a thumb with a fused joint.
Nobody connected the dots, even when my right knee deteriorated at an astonishing rate, leading to a total knee replacement which hadn’t healed after ten months. Scratching her head, my gp finally referred me to a very knowledgeable rheumatologist who figured it was PsA. (But kept searching for psoriasis somewhere on my body, lol!)
All this to say that you should pay attention to the little things and work towards a treatment plan before big things start knocking out your joints.
It does get better with proper care and treatment.


#20

That is a indicator that you may have PsA. Seronegative blood work…


#21

Well, no damage in ankle per x-ray. No real definitive anything. Except for very minor ache I’ve had 70% or more of the time since Feb, normal. They ordered PT, which honestly sure, why not, not gonna hurt, so that if they want MRI can tell insurance they already tried PT (apparently this is a thing). I don’t know. Extremely glad ankle looks fine. But, again, just mystery pain. I’m so weird.