Quantcast

Living with Psoriatic Arthritis (PsA)

History and Symptoms


#1

Hola! I’m Heather. I’m 48 and I’ve been experiencing what I now think is PsA for about three years.

The first year included chronic severe pain, and lots of tests with no end result. At the end of that first year my doc suggested I try Colchicine. She said if I didn’t respond than we have ruled out one more thing (psuedo gout - arthritis that acts like gout) and if I did than maybe we were on to something. I did respond - it gave me my life back, but did not make the symptoms go away completely. They are always there, just not as severe, and I was able to get back to my active life. I never really thought I had pseudo gout based on what I read, but the medicine helped so much I did not mind staying on it. We agreed until there was more information that we would stick with what seemed to be helping.

This year when I started seeing itchy rashes on my elbows and fingers I remembered a rheumatologist asking me if anyone had diagnosed me with psoriasis, and back then the answer was no. I was officially diagnosed with psoriasis in November, and I’m seeing a new rheumatologist. I will hopefully have definitive answers this week.

In the meantime, my symptoms are as follows:

Throbbing, pain and swelling in my fingers of both hands, muscle loss in my hands, right elbow tendonitis and right shoulder/arm pain/stiffness. My right hand used to be worse but I’m not so sure about that anymore.

Throbbing, pain and swelling in both feet but my right foot is definitely worse. This year (compared to the last 3) my feet can actually hurt worse than my hands.

Sometimes my knees feel swollen and painful when I’m at work, as I have a tendency to cross my legs. I am a graphic designer and sit for a lot of the day.

This year my left eye has gotten red and swollen at least 1/2 dozen times. At first I thought it might be allergies, but from what I’ve read it could be a symptom of PsA.

I have had psoriasis on the back of my head for a number of years. This year it is now on both of my elbows and this fall appeared on fingers on both of my hands. I can also feel it on my toes, even though there is nothing there yet. It can also appear on my left underarm.

Sometimes I limp for no apparent reason. Could be my lower back or hips - I’m not really sure.

Before I was on meds for what my doc thought might be pseudo gout, I was in constant pain and would slow down so much it felt like I was walking through mud. I was seeing an OT who taped my fingers all the way up to my elbows. This helped tremendously. She was the one who explained I had muscle loss in my hands and that’s why my pinky and ring fingers curve in.

I appreciate the opportunity to jot all of this down. It’s actually been quite helpful.


#2

Hi Heatherita!
Your symptoms sure sound familiar – so many of them! The muscle loss–I felt that, too, in addition to a lot of your other symptoms…the only things I didn’t have when my PsA was the most active was the knee pain and the red eyes–the psoriasis you have on the back of your head and now your fingers and elbows is such a strong indicator that all the pain you’re having is psoriatic arthritis…the muscle weakness–it goes along with crushing fatigue, which you didn’t mention and maybe fatigue hasn’t been a problem for you. I also had muscle weakness and didn’t really know if the muscle weakness was causing my fatigue or vice versa!
I really don’t know why some doctors are so reserved about making the diagnosis, although I remember one doctor telling me years ago that once they make a diagnosis, you’re stuck with that in your medical records. They like to be very sure about it, but in your case, I should think the doctor is pretty darn sure it’s what you have. Another doctor told me once that some doctors are strictly textbook and they don’t think out of the box or take other things into consideration. If the book says PsA symptoms are A, B, C and D, certain doctors don’t seem to recognize that symptoms are so varied and to different degrees and some people don’t have a lot of swelling while others swell up like balloons…and so on. They all should know that the typical blood tests for PsA are only positive in about 50% of PsA sufferers.
It’s just so frustrating, but I know you’re on the right track and, even though it’s not a fun diagnosis, once you’re diagnosed you can move on to the proper treatment and as soon as possible get on a biologic. Good luck, Heatherita! Glad you found this site and let us know how everything is going!


#3

Hi there Heather, and welcome!!

I’m fairly new to a possible/probable PsA diagnosis, GP thought that’s probably what it is about May last year… it took till March this year to see a rheumy… I have now seen 4 different rheumys (as my rheumy was away a lot), two are fairly convinced it is PsA, one is convinced it’s some kind of inflammatory arthritis, and my main rheumy doesn’t seem to be so sure…

It seems to be pretty much ‘par for the course’ to take a while to get a solid diagnosis, unless you have definitive PsA erosions showing in x-ray (unfortunately, from what I understand, they only show in x-ray once quiet advanced).

The reason I tell you this is so that you won’t be too disappointed if you don’t get a definitive answer when you see your new rheumy… don’t be concerned if that is the case… as long as there is enough going on to point to PsA they do seem to start the process of working through different meds, until they find something that works.

In saying that I do hope you do get an answer soon… it’s rough hanging out in the maybe/maybe not category… and it can be quite a relief to a diagnosis, when it eventually comes… at least then you can put a name to it.

All the best, and do please let us know how you get on!!
Cheers!!


#4

Thanks so much for your reply. I had been feeling fatigue before getting on the Colchicine, but it’s been non-existent since then.

My bloodwork came back normal last week and I felt somewhat dismissed after that. Grateful I don’t have to go on any heavy duty meds but didn’t feel like he took the symptoms I do have seriously until I started talking about my one eye that’s been getting red a lot this year. I was instructed to see the eye doc immediately the next time it happens and if I am diagnosed with iritis than I am to call him. He said that said PsA to him more than anything else.

Until then Naproxen and follow-up in 6 months. Trying to be grateful the Naproxen is helping and focus on what I can do rather than get caught up in the what ifs.


#5

I appreciate this. I saw the new doc last week and I still don’t have a diagnosis. He seems reluctant to do so. I’ve been having issues with my left eye and if it happens again he wants me to see the eye doc and report back if I have something called iritis. I had hoped to have more answers and it’s been a struggle to not feel defeated.

On the other hand, it’s not like I want to go on any of these meds I’ve been reading about so I’m trying to be grateful that I’m not there yet.

I realized I’ve been in a bit of denial about this whole thing. It’s been three years and I’m coming to terms with the fact that it’s not going to go away and now I’m not confident in the least that a doctor will help me. I had been hopeful with this new rheumatologist but in the end felt dismissed and placated. So I’m trying to focus on what I can (have been) doing on my own.


#6

Hi again Heatherita, I’m soo sorry your appt. didn’t give you the answers you were hoping for… yes, it is extremely frustrating, please try hard not to feel defeated… I truly do understand that feeling all too well!!

Although your symptoms do sound very much like PsA to me (I have no qualifications to back that up though) I have been mulling over this reluctance for rheumy’s to give a diagnosis, as I have, and am, facing this too. Maybe this reluctance is brought about by the range of possible inflammatory arthritis conditions and the similarity in their symptoms, and although often the meds given for one inflammatory arthritis will likely help several other types in some cases one specific medication will be of great benefit to one type, and only minimal benefit to, or perhaps even worsen, a different type.

A rheumy usually has quite a mystery to work through to give a definitive diagnosis and it seems many would rather wait to see what other symptoms develop to support, or rule out, the diagnosis they suspect before they put a specific name to it.

At my last appt. my “real” rheumy (I make that distinction because it is now his registrar I see as my “main” rheumy, who is amazing!!) found a tendon issue in one of my hands that he says “only” happens in inflammatory arthritis… that seems to finally have him convinced that what I am dealing with is definitely one of the inflammatory arthritis’s (as opposed to osteo), and seems to have given him greater confidence in supporting his registrar’s decision to ramp up the meds some.

There is also a protocol of meds that must be worked through before a rheumy can prescribe something like a biologic, you’ve most likely read about the 2 DMARD rule on some of the posts here… my understanding is, that rule can be over ridden if there is sufficient evidence to suggest that the PsA is rapidly running rampant, but that seems to only happen when there is sufficient joint erosion to show on x-ray. Others will be more qualified to expand on this perhaps.

I know everything I’ve said above must sound like I’m being a prophet of doom and gloom… I don’t mean to be, just trying to help you feel less defeated by outlining that this seems to be pretty much the norm in our situation, much “wait and see” time unfortunately, a real challenge to our patience.

Yes, do continue to focus on what you can do to help yourself… read through as many of the posts on this forum as you can and learn as much as possible about your condition… you will always read that keeping moving is a big one, this is true, do try to remember to pace yourself though and not overdo things.

One of the things I found frustrating with a rheumy appt. is the limited time frame, meaning it is impossible to describe every ache and pain every time you go (and so far each appt. I’ve had I have seen someone different, so that hasn’t helped much either lol) and often the reports that are sent back to my GP only seem to mention one or two of the specific joint issues raised at the appointment, and all the other issues don’t get a mention, so I took a list to my last appt… a whole A4 page (hand written in a hurry) :laughing: The left hand column listed joints affected or specific symptoms (eg. fatigue, brain fog, rashes)… in the right hand column I put brief notes about the effects of each symptom (eg. Hands… comes and goes… problems with door handles, jar lids etc). I asked that the list be kept on my file so that which ever rheumy I see has an overview, a quick reference to where things are/were at. My “main” rheumy (the registrar) seemed very pleased to have that list, we will see if it is of any use in future.

I’m not sure if you have “clicked” to this, or not yet, but when talking to a rheumy/doc it certainly seems useful to focus more on how the symptom limits your day to day function, rather than how painful it is, I think this is because pain itself is a somewhat subjective thing, every one has a different level of pain tolerance, so it makes it difficult for a doc to determine how severe something is based solely on pain levels. It took me quite a while to “click” to that, but now that I have it certainly seems to have helped make appts. more productive.

Sorry, I seem to have burbled on so long… wish I had something more helpful to say!! Just one last thing to add right now… Hang in there… there is hope of getting successful treatment (it can and does happen). Do keep us informed of where things are going for you!!


#7

Hi again, Heather,
I’m wondering, or maybe I missed something…did you have the high (I forgot what it is) – the elevated whatever it is that indicates gout? I know you said the colchicine worked somewhat, but hmmm, I was wondering why your doctor would treat you for gout? My husband has had trouble with gout (among a lot of other arthritis problems) and he takes colchicine. It stopped his gout, but he also had to cut back on some of the foods (sardines, especially) that were probably the culprits in triggering his gout attacks.
Uric acid…I finally looked it up…was yours high?

Anyway, I know the PsA meds scare you, and that’s justifiable…it is scary stuff, this chronic inflammatory disease and all the meds we have to take to feel “halfway” good. But, really, once you’re on a treatment that works and you have a more normal life, you will be more accepting (at least that’s what happened to me) and you’ll probably be more afraid that the med(s) will lose their effectiveness and you’ll have to put up with all that pain again!!!

It’s disappointing your doctors don’t seem to have much confidence in making a diagnosis, but don’t give up on this.


#8

Hi Jean,

Sorry for the delay in getting back to you. I can only do this in small doses. I like the idea of bringing a list of how it affects me. The rheumatologist seemed unphased by my list of joints affected but doing it your way makes more sense to me.

I’ve been off the Colchicine for a month now and I’m starting to feel it. Regardless of the fact that it wasn’t the “right” medicine, it still helped. This weekend I needed help stirring and adding potatoes to the soup I was making because it became too painful for my hands. So I don’t quite know what to do. Just taking it one day at a time.


#9

Hi there,

My doc put me on Colchicine to rule out or confirm pseudogout, which is a form of arthrits and not actually gout, but they are treated the same. Instead of uric acid crystals people who have pseudogout have calcium crystals. I never really thought I had pseudogout but stayed on the meds because it gave me my life back.

Thanks so much for your support.


#10

Hi again Heatherita :slight_smile: Firstly, there is absolutely no need to apologise for the delay!! I totally understand the need for small doses :smile:

The idea of listing the way symptoms affect your ability to do everyday tasks is one that I found somewhere on this site… It’s an awesome place to learn how to deal with PsA stuff :blush:

Putting everything on paper can seem a daunting task, I know I was almost upset when I started to think about all the “little” things that had almost become part of everyday life (so slowly and insidiously that I really hadn’t noticed some of them, or hadn’t put them in the PsA category either), it was definitely a sobering thing to look at how long that list had become over recent years. But, yes, I think it was also a positive thing, for me in the sense that it helped to clarify what might/might not have been connected, and for a rheumy to get a quick overview of the “whole” rather than just the “one joint here, one joint there” view they had seemed to have.

Do put “needed help to add veg to and stir soup” on your list… this gives a really good indication of how severely this is affecting you. I’m assuming your next rheumy appt. is a way off? In the meantime, maybe some cheap little wrist/hand supports, like sports ones, (to wear when you have something you need to get done) might help to support wrists/hands a little to keep you going. But it does sound as if you really could do with something as a stop gap till your next appt., it is possible to go back to your GP, they might be able to offer some anti-inflammatories to get you through?

Unfortunately this is one of those “one day at a time” things… I try to keep in mind that each day is one day closer to getting the right treatment… it can be a long and frustrating journey, but the benefits once the right med/combo of meds is found will be well worth the wait!! All the best, I do hope your wait isn’t too drawn out!!