First Newbie of the New Year! Let's get this convo started!

General
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Happy New Year, everyone! I approved this year’s first new member today, and thought I’d introduce them with their own profile story:

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I’ve recently been diagnosed with PsA. The rheumatologist said it’s very mild, and seems to be taking a very non-aggressive approach to treatment. I’m concerned, because I tend to downplay symptoms and also because I’ve realised since the appointment that some symptoms have been going on for years, I just didn’t recognise them for what they were, so I didn’t mention them. It all feels a bit overwhelming and confusing right now. I’m kind of dreading my second appointment.

As is so often the case, my reaction to Newbie’s profile was “oh ya, tell me about it!”. How many of us have been in that very same place? A rheumatologist taking a low-key approach, you coming 'round to realizing that there’s more to this thing than you thought, wondering what you’re going to say at the next appointment … ugh, not good. Nothing about being diagnosed with PsA is good, except maybe the realization that you aren’t crazy after all, and the prospect of maybe feeling better down the road.

So New Year’s Newbie, welcome!
So many of us have been where you are, and get your dreading the next rheumie appointment. But you’ve put yourself in a great position! (You’ve got US! Kidding … or am I?) I have a couple suggestions, which others may or may not “second”:

  1. Be glad that you’re going back for 'round 2, and start making notes right now. All of those things that you realize now were most likely PsA … it is all relevant. List it, date it as best you can and make two copies to take to the appointment (one for the doc, one for you). Look forward to it!
  2. The severity of this disease is really hard to judge. Your pain is a poor indicator: some of us experience pain in very different ways from others. OK, then you think “Well, if I can tolerate this, what’s the problem? Doc said that my PsA is mild.” Hmmm…maybe…maybe not. The great leveller in all of this is joint damage. If the doc’s misjudged, s/he won’t be the one going in for a knee replacement.

So I would say, you’re pretty lucky to have a diagnosis, and to have the chance to fill the rheumie in on the rest of the story, as you now remember it. Learn as much as you can about this disease, hang in there and hang out here with us .

All the best from us here. We hope you’ll join this conversation and ask lots of questions.

(And now over to some of your new PsA friends!)

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Welcome!

It’s interesting. I was never told that I had mild disease, but I was treated as though I did, at least for the first year. That was rough! Infant child, along with overwhelming fatigue, pain, etc. That was over 11 years ago. Ask me how many surgeries I’ve had since then. Plus other health issues. Overall my disease control is decent, and I’m on a biologic and a disease modifying med. I wonder what would have happened though if someone had looked at all of my overuse injuries starting in my teens, if the long term outcome would be any better.

I agree with Seenie. Track your symptoms over time, and also consider what your limitations might be. Things you no longer do, but you used to. Daily issues.

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Thanks Seenie and Stoney - for sharing a bit of your own experiences, and for the welcome and the advice.

So far my rheumatologist only has me on NSAIDs, and they’re not doing anything. Actually, my pain is worse at the moment (not saying the drugs are causing it, just that they’re not helping). Unfortunately I’m also experiencing major anxiety and some depression so it’s hard to be proactive and assertive right now. I know I’ll have to be, but it’s exhausting and I need to pace things.

It’s been interesting reading some of the stuff about anxiety/depression and PsA. I’ve had PTSD for most of my adult life, but I’ve never had anxiety issues or panic attacks before, even though I’ve had some difficult experiences - but for the last 15 months I’ve been mostly too anxious to leave the house. There’s no content to the depression or anxiety. It feels entirely like something my body is doing. It’s the weirdest thing.I was living normally, then everything came to a screeching halt - then a few months later my fingers started to become distorted, the pain in my feet flared to the point that I stopped going walking, my neck made me feel like Princess and the Pea trying to get comfortable at night… I’m willing to work on my emotional issues, but this feels so different and difficult to get a handle on - not helped by the fact that I don’t feel like I’ll be believed by medical folk if I say that I think my mental health issues might be a result of the PsA (at least to some extent).

I also found out today that my heart isn’t great. A leaky valve is causing damage to one ventricle and the elasticity of my heart isn’t good. My blood pressure’s pretty high. I’m only 48. I thought I’d have longer before I felt like my body is wearing down.

Sorry… I’m trying not to get too caught up in it all, but it’s been a pretty difficult time, lately. I’ll take some deep breaths and note your advice. Tracking symptoms, keeping notes, approaching my next appointment as an opportunity to provide clearer information to move on with, remembering that it’s helpful to at least have a diagnosis to work with. I think I’ll push for some x-rays (or are ultrasounds better?) as well. My heels are really painful all the time but haven’t been looked at yet, and I’ve only had x-rays of my hands, which showed mild deterioration - but the rheumatologist said the large bulge on my knuckle isn’t bone, so it wouldn’t show up…

Wow, I need to stop now. Sorry. I’m a bit overwhelmed.

Again, thanks for sharing your experiences. I look forward to learning more from the people here, and hopefully down the track I’ll have something to offer in return. :slight_smile:

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Welcome Rowan!

No need to be sorry, most of us have either been where you are, or are still there - we get it :blush:

It’s no wonder you are overwhelmed. Most of us have that happen too, often with depression and anxiety that seems to come out of nowhere. It sounds like you are headed in the right direction though;

these are great things - and we know they take a lot more work than they sound, particularly when you feel rubbish all the time. Keep up the good strategies, and keep learning and advocating as much as your energy allows - it really does get better!

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Thanks Jen :slight_smile:

I feel like every time I open my mouth (or put fingers to a keyboard) at the moment, all my stress and confusion and doubts and such just come pouring out. It’s nice to be reminded that many people feel the same way at first.

Fortunately, my grown-up daughter is super supportive, but it’s great to have found this forum to help me get a handle on some of my seemingly endless angst - and to learn from everyone here. Reading some of the stories here, I can begin to entertain the possibility that the future will be manageable - however it plays out.

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Rowan, have you started making your list? Stoney mentioned listing your functional limitations and the things you’ve stopped doing. that’s a great point she made. Telling HOW your symptoms affect your life should tell the doctor more than a simple statement of a symptom. ("My sore heels are keeping me in my recliner chair instead of doing things and going for walks, which I’ve always done.) And I’d include social things, if there are any, as well: whether it’s the pain of getting yourself out or having to stand or the anxiety, whatever is keeping you in the house. Those have to go on your list as well.

I’m also scratching my head about the fact that x-rays are showing only mild deterioration in your hands. My understanding is that when x-rays show any damage, the PsA has been at work for a bit. If it were me, I’d be asking about stopping further deterioration. BTW, I think you are right about ultrasound: it will show inflammation and swelling of soft tissues, which x-rays don’t.

You are going to have plenty to talk about at the next appointment, and you are going to be in control of the conversation. Have you thought about taking your daughter along?

S
PS you said

Sorry… I’m trying not to get too caught up in it all, but it’s been a pretty difficult time, lately.

Rowan, sometimes you NEED to get caught up in it all, and maybe get a bit angry, and “armed” for battle to start improving your situation. I went for a year telling myself to trust the rheum who said my disease was mild (she’s been to med school and I haven’t), thinking I was a wussy hypochondriac and I just needed to buck up, and minimizing the changes that had happened to me as a result of my symptoms etc etc. After a year of being part of this community, I was informed and angry and assertive (OK, I did get a few firm “pushes” from some people here – they know who they are, LOL) and that was what turned my disease – and my life – around. You can do it.

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Hi Rowan, sorry you’re having so many awful
symptoms! I can tell you, I agree that NSAIDS aren’t much help. I rarely bothered taking them. They don’t help the exhaustion and the all-around sick feeling one gets from PsA. I think your rheumy is saying mild disease because you’re not assertive about your symptoms. My husband used to get so mad at me because I’d “complain” at home but then put a smile on my face for the rheumy and not let on how bad it was! It’s really hard for me to be honest to doctors and most other people about how sick I feel…this forum is the only place I feel safe to let it all hang out!
The one time I did let it out as truthfully as possible was when I started feeling depressed last year. My doctor could tell right away I wasn’t my normal self. Turned out, the depression (along with a few other pain symptoms) was from taking a statin for my high cholesterol! We stopped the statin and in a few days I was “normal” :crazy_face: again!

PsA can be overwhelming, it gets to be unbearable, but I can tell you there is hope! So many of us have great results with biologics, and I’m sure it won’t be long before your rheumy will be recommending them for you. Hang in there—most of us have been there and we feel unbelievably better now!

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Hi Rowan,

It’s the very good people on here who taught me how to harness my anger when I was first diagnosed. I was exceptionally angry that PsA decided to lump itself with me all of a sudden. My introduction to this disease was very sudden and shocking. Which actually in hindsight was a blessing frankly because instead of me persuading the medical profession something was wrong with me, it was the medical profession trying to persuade me that was PsA.

But start out with a big sheet of paper on a keyboard or physically and list symptoms and issues as much as you can with dates so you start getting a chronology going. Slowly you’ll build the detail, for example initially whilst I could type, I couldn’t write with a pen or pencil, do up a bra and struggled with toliet paper etc etc. Now thankfully none of them are issues anymore but you get the idea on looking like how daily necessary things can be a struggle. Another thing which is really useful is to find a body map a sort of outline of a non-sexualised body and mark on it where it hurts. Actually perhaps we should have one to down load on here to help people, a PsA one too which shows joints on fingers and toes larger than real life so we can mark them appropriately, that’s incredibly good at showing anyone where things hurt or simply don’t work anymore. I’m sad your rheumy didn’t do a full top to toe physical examination of you feeling each joint from your head right down to your little toe as that is often far better than any x-ray or scan as showing what’s going on. Maybe ask for one?

And yes I truly do know all I’m saying is horribly overwhelming, but come back to it (and indeed all of our comments) again and again and it will get easier.

Lastly I’m firmly of the view that whatever psychological and/or emotional state any of us are in when we first realise we’ve got this disease, the overwhelming fatigue, and all of it certainly pushes emotional and psychological endurance to the limit. I went back to talking therapy following getting over my temper tantrum at having this disease and doing that just so helped. It helped me accept this thing and truly worked hard at maintaining my sanity and getting me actively involved in both getting treatment for this disease and getting a considerable amount of functional ability back. Initially walking down my garden was akin to climbing Mt Everest, on New Year’s day, I walked my dog for 3 and half miles. In between the intervening years, I’ve had lots of challenges that disease throws up including having to walker for a whole a summer but if nothing else you can start to see that this disease can be managed and can give back functional ability. So if something is truly horrid right now, you can bet your bottom dollar that will change often for the better.

One way of looking at this disease that helps me is to focus on its cause which is that all that’s wrong with me is that I’ve now got an insane immume system. A system rather like the worst teenager ever, prone to hysterical fits of tantrums and truly awful behaviour but also capable of turning that on its head in an instant and being just calm again. When I project out in that way, I get less scared of all of its twists and turns and that so helps me.

So keep on talking to us, keep on asking questions and slowly things may well feel just a little more mangeable however awful they are. :hugs:

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Thanks so much Poo; Seenie, and GrandmaJ,

I’m feeling overwhelmed today, so I don’t feel like I can say much (have let myself have some denial time over the PsA so I can try to get my head around the heart problems, which feel far more frightening) - but I’ve read all your messages several times through. I feel really supported, and I know that when I can face this again, I’ll engage more with what you’re suggesting. I have two weeks before my next appointment, and I plan to be prepared.

Seenie, the radiologists report was really uninformative (done by a dodgy in-house tech at a cheap medical centre). His ‘report’ was simply: ‘Some degenerative changes are seen to involve a few of the distal interphalangeal joints of both hands. However, no radiological manifestations of rhematoid arthritis identified.’ (My grandmother had rheumatoid arthritis, so that was the assumed initial diagnosis - but, thankfully, I don’t have any signs of it). The fact that the report says ‘a few’ joints is frustratingly non-specific. Surely they should be saying exactly which ones, so that comparison can be made in the future - although I guess they can just look at the imaging for that…?

I hope to talk to the rheumy about the fact that NSAIDs aren’t going to stop the deterioration (that’s right, I believe?), and that I’m concerned about losing functionality in my hands (I already can barely write with a pen, can no longer crochet, find it painful to tie my boots, etc…)

As recommended, I’ve started taking notes of specific pain and will get around to making a list of loss of function and lifestyle impacts once I feel like I can face it.

It sounds like you’ve all been through such tough times, and I’m so grateful that you’re willing to share the details and the lessons learned.

Thank you

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You may well have degenerative changes i.e. OA, but it seems unlikely that OA alone would affect your hands so severely and rapidly. Joints affected by PsA can get all sorts of damage as a result, including OA. However I think PsA also goes for joints that already have some degenerative OA-type changes. It’s very chicken & egg. The emphasis on function in this discussion is key here, you are very specific about exactly how your ability to use your hands is affected and this should make your rheumy sit up & take notice.

I doubt there are that many rheumies left who will leave an assertive PsA patient who is losing function stranded on NSAIDs alone. You will not be asking for the world in requesting an … ahem … review of meds. Clever of Seenie to usher us all in because you need to hear loud and clear that disease-modifying drugs are very, very commonly used with moderate to severe PsA. I can see that is giving you the confidence you need already.

Stay strong, this disease so often hits us body and soul at first … then soul/mind/spirit whatever you want to call it asserts itself over the disease! And the meds can help considerably. I went through a long phase of no treatment whatsoever, but that’s history for me now, as it will be for you before too long I’m sure.

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Welcome Rowan. If memory is correct, I was first diagnosed in 1994. Here are some thoughts based on my personal experiences with this disease. I hope they help.

While PsA is a pretty nasty disease, it is not fatal(ha, ha.) At least it has not gotten me yet. However, there have been times when I felt so bad, I wondered if that was next. Seriously though, this is a painful disease, but it can be managed to bring a much improved quality of life to you.

To me, the importance of a good doctor cannot be overstated. I was fortunate that my first Rheumatologist was terrific. She listened to me FIRST, trying to understand my aches and pains, my concerns and fears, and just how PsA was affecting my life. THEN, she gave me her thoughts. Her training as a doc, her experiences with other patients, and a genuine desire to make my life better all came into play. She took x-rays and noted family history and personal details about my work and life. After all, you can’t possibly know which direction to go to reach your destination if you don’t know where you are starting from. Only after this did we talk about a course of treatment to manage my arthritis.

As you already know, all medications have positive and negative effects. Hopefully, the side effects are minimal and present no real problems. But I discovered that it is crucial to talk with your doc about your meds. One of my first meds was an NSAID, coupled with prednisone (inflamation reduction) and methotrexate ( slow the progress of the disease.) I was cautioned about side effects, both near term and long term. During my life I have moved between several cities. A later Primary Care Physician put me on a low dose aspirin for prevention of cardiac problems. I had an ulcer within 12 months and I am convinced, and so was my doc, that the aspirin plus the NSAIDS was the cause of the ulcer. As a result, I cannot take any medications from this group, which eliminates some meds that were pretty effective in controlling my pain. Now I am on biologicals. And I have learned that many (most) of the meds that I try for the first time have a long period (2-4 months) before full results can be seen. It’s frustrating, but that’s the way it has been for me.

Now the good news… you WILL have better days ahead. My experience is that when my meds are controlling pain and inflamation, I can do many of the activities that I formerly did.

Good luck. Better days are ahead.

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Thanks @schoonerbird,

I somehow missed your reply when you posted it. I came onto the forum today because I have an appointment with my rheumatologist and I’m feeling intimidated. It sounds like your first doctor was a rare breed. It’s wonderful to hear about such positive experiences. I’m not comfortable with mine, so I’m giving her one more chance today to see if she’ll actually listen to me (armed with a printed list of symptoms and impacts) - if not, I’ll look for someone new.

Honestly, the best thing about reading your message today is that you seem so calm and positive that this is something that can be worked with (also, your user photo made me smile). It was also a timely reminder that it will take a while to work out the best treatment. So I guess I’m glad I didn’t see your message before :slight_smile: Thanks for the information and support. Everyone here has been amazing.

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Best of luck with the appointment,

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Hope the appointment went well. I am also glad that my words were of some benefit to you. Good Luck.

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Thanks for the good wishes, Poo and schoonerbird,

The appointment went fairly well… I went in with a printed out list of symptoms, impacts, and comments on the previous NSAID (terrible acid reflux, minimal improvement in pain). My rheumy is nice, but she seems to be one of those people who takes on too much and then gets all rushed and off her game because of how busy she is. It took some effort to get her to answer some of my questions, and others, she kind of skated over details. In any case, she prescribed salazopyrin, and ordered x-rays and ultrasounds of my feet when I requested them. I had those done today, and should get the results from my GP on Monday.

Here’s a question, though. My rheumatologist seems uninterested in checking out any specific area of pain/swelling too closely. I feel as though she thinks she’s diagnosed me, and the treatment is going to be addressing everything, so there’s no need to get too focused on detailing what’s happening. For example, she hasn’t checked my hands over by touching them, but when I mentioned tendon pain she pressed on my inner palm on one side and commented that the tendon was quite inflamed and possibly had nodules - but then didn’t continue to check both hands thoroughly. Given that the tendons in both hands hurt most of the time, I would have thought that would be a thing to do. At the same time, I can also see that it doesn’t really effect the course of action, so why go through that process? I’m not sure what to think about that. If anyone can offer a perspective or insight into the need or otherwise of having a detailed examination of every area of pain, I’d appreciate it.

Thanks again for the supportive and safe place to get my head around all this.

Rowan

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That was a good appointment because you prepared really well! I think you are right about her “economical” examination style. She alreafy had a treatment plan worked out, so spending more time on looking wouldnt change anything.

When do you go back? Three months?

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Oh, cool. That’s useful to hear, Seenie. I couldn’t see how further examination would change anything, but I think there’s just the fear of something important being overlooked and the desire for validation about what’s happening (since, honestly, I’m still in denial much of the time). She’s very willing to order tests and scans and such if I request them, which is great. She even said that my concern about what’s going on is reason enough to get imaging done, which was really fabulous.

I also went in ready for battle over the idea that PsA is contributing to (if not causing outright) my anxiety at a physiological level (had numerous studies pulled up on my phone to show her) and she (unknowingly) cut it all short because she absolutely agrees. That validation was so helpful, even though again, it doesn’t really change my course of treatment.

I go back in ten weeks, and I’ve booked her first appointment for the day so that she hopefully won’t be frazzled because she’s running late.

Thanks for the feedback :slight_smile:

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Hi Rowan,

Interestingly my Rheumy has really never been hands-on with me either since diagnosis, unless I have a specific joint with a lot of swelling I mention, then he might feel it. I have a suspicion that perhaps this is an Australian thing?

Luckily my Rheumy seems very knowledgeable despite this, listens well (unless you mention pain), is willing to answer questions in detail, and seems to have a real diagnostic knack (I have multiple autoimmune issues so it was a bit tricky figuring things out), and I don’t feel his lack of hands on has affected my care, but I did have to get organised both at the start to actually get treatment (I was too “mild” and he was reluctant to treat), and again 9 months later when he kept being resistant to trying biologics when standard DMARDs didn’t work.

I guess what I’m saying is it is pretty normal (despite it being frustrating and downright hard when you’re in pain and exhausted) to need to be organised and advocate for yourself - If you feel you are getting the treatment you need that’s the main thing. It sounds like it really paid to be well organised, go you!

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Thanks, Jen. :slight_smile: It’s reassuring to hear that her hands-off approach doesn’t necessarily mean I need to go out looking for a different rheumy. I keep reminding myself that it’s early days, yet, (in terms of my own knowledge and also my treatment) and not everything is going to be sorted out at once. I’m grateful for the people here helping me maintain perspective.

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First I’m so glad that was a good appointment, as it was. You’re getting treatment, the right sort of treatment and are now on the right treatment path at least and you’re confirmed to have this disease. That’s the major battle over.

However to progress through the treatment path, NICE demands you hitting tender and swollen joint counts to provide funds for things like biologics, so at some point your rheumy might have to get more hands on if your disease progresses and the sulfasalazine doesn’t prevent progression. Incidentally sufasalazine worked tremendously well for me for about 7 months at the top dose of 6 tablets per day. It was sad it then just stopped all of a sudden.

And just because I like to know things like joint counts, I feel put out if I don’t get an effectively head to toe examination for the swollen/tender joint count. I also think it’s just indicative of where the disease is at then too. It helps me deal with it. It goes up and down all the time and I find watching that path just interesting.

But for now though, if I were in your shoes, I’d be properly pleased with myself, very much so. And the sulfasalazine for me was a benign drug, few if any side effects and no lifestyle changes required. I had some problems with it later after adding in a biologic and endured a truly rare reaction but taking it on its own was simply a doddle for me and so easy to do. So I hope that’s the case for you too. :crossed_fingers: